Anyone Else Feel Their Heartbeat Rocking Their Body [Archive]

View Full Version : Anyone Else Feel Their Heartbeat Rocking Their Body

mnaha

03-05-16, 00:54

It seems that I have read about others on here that have this symptom. I feel that I can feel my heartbeat rocking my body . I can also hear my heart beat going luhdub luhdub luhdub. I also feel my heartbeat doing this in my lower back .

I have never noticed that my heart makes a lub dub sound or rocks my body. I have always just heard or felt a dub dub dub feeling and no lubdub. I am really worried about this but I was in the hospital a year ago with tachacardia and they did an ecg on me and for cardiologist checked it out also my primary doctor and my regular doctor who is an internist with 40 years experience but I don't ever recall my heart beating this way . It seem to start doing this over a month ago and has been doing it over a period of time. I have researched this on the internet and there seems to be others that have this but I saw one response from a doctor that said it could be about seven different reasons and stress and anxiety one of them.

But they said to have blood work done and electrolytes checked and ekg etc. I had all these seven or eight months ago with the all clear and a month or two before that in the hospital being monitored for seven days and nothing. Everything was fine .I worry because I wonder if anything could change in that time .

I don't think that I have ever had this before and it worries me but then again I might have and not remembered. Also I get very tired in the late afternoons and generally lay down but later start feeling better.

If any of you have ever experienced this please respond. Thank you in advance.

Carnation

03-05-16, 01:03

I don't know about rocking, but I have certainly felt my heartbeat in different parts of my body. In my stomach, side, ear, neck. I believe it is when we are in a over sensitised state. It is normally when I am still. When I am moving about, it doesn't seem to alert me.
Since listening to 'Claire Weekes', it stopped me from worrying too much.
I know anxiety can do this and I have had this for a very long time, since a teenager actually, so I put it down to my overthinking and worrying.

Fishmanpa

03-05-16, 01:29

We're living, breathing beings. Our chests rise and fall with every breath, bones in the ear constantly move in reaction to sound, our eyes are constantly moving and adjusting to light, even while we sleep! Blood courses through our arteries and veins at incredible rates and pressure. Our bodies are constantly moving. The only time it ceases is with death.

You're hyper-focused on this Michael, plain and simple. What you're describing are normal bodily functions you've had your entire life that are now blown our proportion due to your anxiety and hyper-focusing on these normal bodily sensations.

Positive thoughts

mnaha

03-05-16, 02:57

It just seems that over time I have seen other people talk about this on here but have searched and not really found where they were talking about it at. Its a definite lubdub sound and feeling in my pulse. I guess I should read claire weeks books again. Maybe it would help me. I was hoping someone could tell me if they felt exactly the samething so I would know its anxiety . I have seen other people online on the internet talking about it and hopefully someone on here will have experienced it too. I am trying very hard to write it off as anxiety but there is always that nagging feeling that maybe I should have gone to the doctor . It started about the time we were getting ready to move and has continued all this time. Anyway thank you Carnation for your imput.

---------- Post added at 17:34 ---------- Previous post was at 17:31 ----------

We're living, breathing beings. Our chests rise and fall with every breath, bones in the ear constantly move in reaction to sound, our eyes are constantly moving and adjusting to light, even while we sleep! Blood courses through our arteries and veins at incredible rates and pressure. Our bodies are constantly moving. The only time it ceases is with death.

You're hyper-focused on this Michael, plain and simple. What you're describing are normal bodily functions you've had your entire life that are now blown our proportion due to your anxiety and hyper-focusing on these normal bodily sensations.

Positive thoughts

Thanks Fishmanpa. I appreciate your input and it does make me feel better as someone that has seen and experienced so many things and read others feeling the very same things I feel that you are qualified to answer this and feel confident that you would know. I will try as hard as I can to put this out of my mind. Thank you .

---------- Post added at 18:57 ---------- Previous post was at 17:34 ----------

Found the following online medical board

"i am a 33 yo male and have been "living" with this condition for the past 14 or so years now. i really do not know what to do and i am at my wits end as it has caused me severe deprression so much that i have become a recluse from close family and friends, as they all think im crazy because i dont get involve in their conversations and sit in my room all day, i used to be a university student when i got struck with it and had to drop out as i could not concentrate on my work like i used to. my mind usually is blank because of this condition and it really annoys me but u know how people are if they dont understand they dismiss it as unreal. anyway wwhat i think caused it was some tablets i used to take when i was in my early twenties that i took to control my weight as i used to go to the gym alot back then. i feel like i am 50 years old and im only 33 its so crazy this condition has ruined my future and i dont know what to do, i need your support and help. my main conditions are my head nods to my heartbeat and my body feels like its shaking all over at the same time and if i look in the mirror at stare at my self i can see my head rocking to my heart beat in synchronisity. i am so fed up of this i have some docs take a look at it and they found nothing abnormal made me wear a portable ecg for 48 hours. if someone who is in the same situation can help me i would be so greatful, i dont know if it is a thyroid issue or if its aortic regurgitation, these comments have got me confused as to what it is, i thought it was regurgitation but now im not sure anymore?

also get dizzy alot and shortness of breath, for example when im shopping i feel it and get very anxious and nervous as i feel my energy levels dropping halfway through. i think one day i will just drop dead in the mall....lol

thanks for taking time to read my story appreciate it"

Fishmanpa

03-05-16, 03:21

The key statement from what you found as well as the same thing found with with your scientific medical tests and exams from medical professionals is:

i have some docs take a look at it and they found nothing abnormal made me wear a portable ecg for 48 hours.

When nothing medically is wrong or abnormal it leaves only one thing. Personally, if I focus on what you're saying, I feel it and can see it too. It's just normal bodily functions. I lay down at night and can hear my heart beat and feel my body moving. I'm just able to tune it out, focus my mind elsewhere and that's it.

Positive thoughts

blue moon

03-05-16, 04:46

Well said FMP x

mnaha

03-05-16, 05:03

The key statement from what you found as well as the same thing found with with your scientific medical tests and exams from medical professionals is:

When nothing medically is wrong or abnormal it leaves only one thing. Personally, if I focus on what you're saying, I feel it and can see it too. It's just normal bodily functions. I lay down at night and can hear my heart beat and feel my body moving. I'm just able to tune it out, focus my mind elsewhere and that's it.

Positive thoughts

Kool Dude! You are Da Man! :yahoo:

---------- Post added at 21:03 ---------- Previous post was at 21:02 ----------

:shades::shades::shades::shades::shades::shades::s hades::shades::shades::shades::shades::shades::sha des::shades::shades::shades::shades::shades::shade s::shades:
Well said FMP x

Shazamataz

03-05-16, 06:44

LiveAboveIt

03-05-16, 15:13

Yes, I have the same issue. Its always anxiety related.

ankietyjoe

03-05-16, 15:33

Regularly

I weigh about 100kg and share the same build/profile/outline as Obelix the Gaul, yet my heart beat is more than capable of rocking me back and forth, visibly.

Mojo61

03-05-16, 17:06

I can see mine thumping away in my left boob lol. It is worse first thing in the morning and I can hear it in my ear when I lay on my left side. You should welcome it as it shows you are alive and have a strong and healthy heart.

mnaha

03-05-16, 18:33

I sometimes get this and doctor has assured me it's anxiety and nothing to be alarmed about.

I usually only notice it at night and then it keeps me awake. I've stopped being worried about it now though it does keep me awake when it happens, which is a worry in itself!

Thank you for coming forward and letting me know , it makes me feel so much better to know that I am not alone. Thanks again .

---------- Post added at 10:32 ---------- Previous post was at 10:31 ----------

Yes, I have the same issue. Its always anxiety related.
Thank you for coming forward and letting me know , it makes me feel so much better to know that I am not alone. Thanks again .

---------- Post added at 10:32 ---------- Previous post was at 10:32 ----------

Regularly

I weigh about 100kg and share the same build/profile/outline as Obelix the Gaul, yet my heart beat is more than capable of rocking me back and forth, visibly.
Thank you for coming forward and letting me know , it makes me feel so much better to know that I am not alone. Thanks again .

---------- Post added at 10:33 ---------- Previous post was at 10:32 ----------

I can see mine thumping away in my left boob lol. It is worse first thing in the morning and I can hear it in my ear when I lay on my left side. You should welcome it as it shows you are alive and have a strong and healthy heart.
Thank you for coming forward and letting me know , it makes me feel so much better to know that I am not alone. Thanks again .

mnaha

04-05-16, 04:25

Shazamataz

04-05-16, 06:45

It probably isn;t a change in rhythm as such but your anxiety perceives it differently?

mnaha

17-05-16, 00:23

Went to the ER yesterday . The rocking in my heart has reached epic proportions . Now even with standing it rocks and its driving me crazy. The ER doctor did ekg ,nothing unusual there. They monitored me for five hours and did not see anything other than my blood pressure going up and down but the heart was doing ok according to them. Also they did thorough chest xrays from throat down on front back and sides and also ct sccan of tissue study of throat ,chest and neck , nothing there and also a complete blood work up and nothing there. They did not do an echo or any other heart test besides monitoring and also ekg. I ask the ER doctor what caused the rocking and he told me stress . I also told him about hearing my heartbeat in my ears and he said nothing. He did not resolve the skipping feeling nor any other heart issues. According to him everything was as it should be. I started reading about issues at that hospital with all kinds of stuff and also worried now that the test they gave me may not have even been looked at. The whole hospital and staff gave me the creeps and the operation of everything. I hope the doctor is competent and also did look at all the test and was correct in what he was telling me . I left there yesterday glad that I was released but then soon started worrying whether things were like they should be. Also the rocking motion seems to be very strong today and worrisome.

The only people that were nice there and tried to make me feel better was the orderly's and the staff on the ct scan and also xray but other than that, the doctor and nurse was very robotic and the admissions were nonchalant and the triage person very cold and not comforting at all. It was very traumatic for me and I miss my hospital and doctor and nurses in Oregon.

So everyone is telling you to go to the doctor but it did not help this time. Very sad worried and scared that there is something terrible wrong and can't fix it. Also the last two days I have woken very dizzy. My blood pressure was very high in the ER but no one seemed worried and the Nurse was really mean to me and screamed maybe I had not been taking my bp medicines and of course I have so it was all miserable. I am almost at the point I would rather die than deal with people like that again .

Carnation

17-05-16, 10:10

Hello my friend :)

I have not been around too much, because my Mum is very ill.

But, if anything came out of the visit to A & E, it was to tell you that you are OK!!!

People are not always attentive Michael, especially when they are working in the public sector and under a lot of pressure.

The main things is that you got the reassurance that there was NOTHING WRONG!
You have to accept that. It is stress making you feel this way and it is almost as if you are waiting for someone to tell you that you are not. Your brain is on alert 24/7.
It is if you can not accept that you are ok, but you are.

Have you managed to settle in ok?
You must stop comparing this place to your old home.
It will take time to adjust and you will.
What about the painting? You have such a talent and I am sure you will get much needed pleasure from it.

All I can say Michael, is that you have health anxiety and need reassurance that you are ok. There is no need to feel insecure. You have your family around you and you have not long been through a major life change.

Walking is very good for high BP. So go and investigate your new surroundings and if you can hear your heart beating, just say, "Hey, I AM ALIVE!". :) :hugs:

mnaha

25-05-16, 01:00

Sorry to say I am ill. In hospital now , found blockages so far 30 percent , doing anviogram tomorrow ,did nuclear medicine stress test found issues there and also mulitible chest scans ,throat scans and trying despertately to find out what is causing critical blood pressure spikes and heart racing into tachy. Doctors are belittled and worroed not knowing where to pursue but trying very hard to send specialist after specialist in tfying to figure out just what to do.Terrified that I will never leave the hospital or live very much longer. Terrified and worried in tucson az :(

mnaha

25-05-16, 08:10

Dr made rounds today.Says lungs full of nodules and possible lung cancer also doing biopsy on lymph node that has been enlarged for over a year. Thinks possible lung cancer advanced to throat and lossibly brsin and arms. Wony know to much more until results from biolsy given to pcp after discharge because of medicaid. This leaves the results of all test in future and past to go to new pcp.So will try to deal with everything day to day but have feated this even before my trip hear. Symptoms and feelings almost confirm what I feared to a perfect match.
Have been mentally trying to prepare myself for surely what I know to be true. My mother in law passed away two days ago.Life is very hard for all involved in our family and especially hard for my wife and immediate family facing this possible diagnosis with me.

Carnation

25-05-16, 08:58

Oh Michael, I am very, very sorry to hear this news. :(

You are certainly a very strong man and you DO have much fight left in your soul.
IMO, they won't keep you in hospital forever and you can be fixed,
It will be your fight and your will that will keep you strong.

I am so sorry about you mother in law. What your wife must be going through, but she has family with her, which is all down to you and your decision and determination throughout your journey.

You are very courageous Michael. You will be in my prayers and thoughts. x :hugs:

MyNameIsTerry

25-05-16, 10:13

I've not been following your threads as much recently Michael and have been meaning to stop by. I'm really sorry to hear about your MIL and that you are in hospital. I hope you are all getting lots of support of your kids now you are over there.

We will be thinking of you on here mate. They are doing every test, they will get you sorted. You always bounce back, I'm sure you will from this too. You got through all the moving process, just keep fighting.

Fishmanpa

26-05-16, 13:36

Dr made rounds today.Says lungs full of nodules and possible lung cancer also doing biopsy on lymph node that has been enlarged for over a year. Thinks possible lung cancer advanced to throat and lossibly brsin and arms.

We're all hoping it's not sinister Michael. Please let us know and also, I would obtain the records from your ER visit on the 17th. You posted:

Went to the ER yesterday . Also they did thorough chest xrays from throat down on front back and sides and also ct sccan of tissue study of throat ,chest and neck , nothing there and also a complete blood work up and nothing there.

Having been there done this before, the x-rays and CT scans absolutely would have picked up lung nodules and nodes. As you've had extensive testing of your heart as well as scans of the areas now affected, I would also obtain records and images from previous x-rays and scans done in the last 6-12 or so months as they would have shown this as well. I can't imagine they would have missed your lungs being full of nodules as cancer doesn't pop up and grow overnight! If indeed those images show something, I would obtain an attorney!

Positive thoughts

pulisa

26-05-16, 18:02

Am hoping you can get clarification and a logical interpretation of these results which appear to contrast hugely with your latest diagnosis as FMP points out. It all sounds really confusing.

Wishing you all the very best.

MyNameIsTerry

27-05-16, 06:28

Michael,

I'm sorry I didn't see you 2nd post because I read the 1st and came back to post later so I missed out on that update.

First off, my GF's mum has stage IV lung cancer. Within a month or so she was in the hospital because she couldn't breath properly. However, a couple of months on she was responding well go chemo and her cancer has shrunk. She is terminal but people do live beyond 5 years and we remain hopeful. Even with this she has quite quickly gone from an active healthy woman to being pushed around in a wheelchair and unable to climb a flight of stairs more than once a day.

I'm confused. You've had a lot of tests. If a metastasised cancer to that lymph node happened a year ago, do you know how lucky you would be to make it to the month 7 they judge mortality rates by? Even with chemo, it's not good so without it I would expect a terminal cancer patient to be very ill. My GF's mum is being successfully treated but couldn't do what you have been doing recently. I know someone else dealing with terminal cancer that has spread too and she is also very ill.

This gives me hope for you.

Also, I remember that lymph node. You had it checked out. You also had infections near to it.

They absolutely would pick up hardened nodules on scans of your lungs. That was what prompted my GF's mother to have further tests. They did tell her it could be other things but did a biopsy to rule out cancer initially. I know this will sound scary right now, and I wish it wasn't, but I really can't see them missing this so I'm confused about it all.

Have they said "it's possible" but they want to rule it out?

I hope you don't have lung cancer and I remain hopeful that these strange holes in this will mean a different diagnosis for something they can treat successfully for you.

rodds

27-05-16, 10:23

I have super sentive to my heart beats getting weird or heart thumps difficultly to explain been to hospital all test fine still getting bad thoughts every day a fight rodds

Fishmanpa

27-05-16, 13:33

When I was facing a diagnosis, my doctor was cautious with his words. He had his suspicions but deferred to an expert. When I went to the ENT, I told him before the exam that I wanted his expert opinion straight up. He did his exam and said "I think this is cancer. I don't know exactly what type but I've seen enough of it to know it when I see it". The biopsy was taken and I had confirmation within a week. So a doctor wouldn't just say something like that unless they had some substantial evidence to support it. In my case, the CT scan and exam which included a scope supported his words.

With the conflicting test results you've had, I find it odd that the doctor would say what he said. To tell you he thinks it's basically highly advanced metastasized lung cancer? Why the heck would put the fear of God into you without substantial evidence? That's just freakin' cruel!

What was the result of the angiogram? Let us know how you're getting on.

Positive thoughts

MyNameIsTerry

27-05-16, 13:51

I think back to Michael's threads and he's mentioned feeling better, doing things and then he has driven all those miles.

I simply can't believe someone with stage IV could do all that let alone with no treatment to slow it down. It makes no sense to me at all.

If Michael had posted that without a doctor being involved I strongly believe we would all be telling him there is no chance of cancer for very obvious reasons to those of us who have experienced it or have people in our lives who have. No way. He would be very ill and there is no way he would be having improvements let alone do that gruelling road trip. I just can't see it. My GF's mum lost a ton of weight and had no energy.

Getting a year even with a full chemo regime with stage IV lung cancer is sadly very lucky. This is one reason I have hope of a shite doctor here.

mnaha

27-05-16, 22:56

MyNameIsTerry

27-05-16, 23:13

So, have you had something resembling a sore that wouldn't heal all through this time?

Carnation

27-05-16, 23:16

Michael. You have to stay positive my friend.

I have been with you all the way. :hugs:

I don't believe this is your end. Whatever is wrong, can be fixed.
I will pray for you my friend and you stay strong and positive. x :hugs:

Fishmanpa

27-05-16, 23:39

Squanderous cell carcinoma of the lymph node. They think its in the lung no confirmation for sure yet. Heart issues problems on the nuclear stress test and giving meds but not working. Angiogram is next if I make it. I feel so bad right now. Afraid to go to sleep because I am so weak. I am so scared. Suppose to see an oncologist right away but I am not sure I will make it. There is something going on that is making me feel so very weak and out of breath but one doctor said that he thought the oncologist could take care of this quickly but there is also something going on because I really feel as though I will pass away any moment. None of the doctors are being forthright and telling me anything for sure and they aren't for sure what is causing the decay so quickly. At least I got my wife here with family so she isn't alone. I don't know what else to say and I am so weak I am supprized I was able to write here. If I make it ,will try to get wife to sigh in and report. Pray for me.I wish this had just been anxiety but I had a feeling it wasn't . Thank all of you for giving me courage to make it here and bring my wife to complete a quest to make sure she would be ok. God bless you all and thank you for everything.

I still can't believe they missed this with all the tests you've had! Something just isn't right here. According to your post history, you've had nothing but clean reports all the way around since last year and all of a sudden you actually do have heart issues and cancer within a week or so of a clean report? If indeed they missed this diagnosis last year when you were worried about that node, they would without a doubt found an issue with the recent scans and tests. It wouldn't have just "popped up" in a week! How can all those scans and x-rays miss this? It was quite apparent with the scans I had. I reiterate my advice in acquiring all your test results from the last year and hiring an attorney. What was the official diagnosis code? They would have told you that if it is indeed "Squamous" Cell Carcinoma (what I had). While SCC is commonly associated with skin cancer, it's one of the leading causes of Head and Neck cancer and is also associated with the HPV virus (again, my situation). In my situation, the node grew... and fast! There was no mistaking it. Within 6 months time it looked like I had the mumps on the left side of my neck!! It was quite apparent with me and with everyone I know who has suffered from this. There was just no mistaking something was wrong. As I say... "Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts." If it is, it's vital you get a 2nd opinion at a CCC (Certified Cancer Center (http://health.usnews.com/best-hospitals/rankings/cancer)). You're going to need all your test results from the last year anyway for a 2nd opinion. You're in AZ right? The Mayo clinic is in Phoenix and is one of the top H&N cancer centers in the US.

As far as the doctors not being forthright? My personal experience was that they laid it all out there, plain and simple. Again, in a situation such as this, there's no pulling punches. You need to be your own advocate or if you can't, get your wife to do so.

I had my 2nd heart attack literally weeks before my diagnosis. I was diagnosed Stage IV and I'm a survivor. So if this indeed is cancer, you can make it too. First things first, Get written confirmation of the diagnosis, get all your test results and then get a 2nd opinion before you do anything else.

Positive thoughts

MyNameIsTerry

27-05-16, 23:47

Michael mentioned this is a result of that lymph node. But that's been like that over a year and he had it checked out by his experienced regular internist. SCC is skin cancer from sun damage and it takes time untreated to penetrant the skin layers to a lymph node and by then it can be disfiguring.

How could that be missed? That lymph node is in a place easily seen and has even been checked visually!!!

Something is very very wrong here. I still remain hopeful that this is a medical blunder, it just doesn't make sense. He surely would have seen it himself and in someone questioning symptoms, he would have been all over it.

Mojo61

28-05-16, 00:20

MyNameIsTerry

28-05-16, 00:29

But SCC? That would have been visible. Dad had one of the two common skin cancers from prolonged sun exposure, I forget if it was SCC, but his was very much visible as an open sore that never healed. We thought it was maybe an ulcer.

Mojo61

28-05-16, 00:35

Fishmanpa

28-05-16, 01:15

It would have to be metastatic to have spread to the lymph nodes. How could all the doctors and tests you've had have missed that? Something is very wrong here....

General Information About Metastatic Squamous Neck Cancer with Occult Primary

KEY POINTS

Metastatic squamous neck cancer with occult primary is a disease in which squamous cell cancer spreads to lymph nodes in the neck and it is not known where the cancer first formed in the body.
Signs and symptoms of metastatic squamous neck cancer with occult primary include a lump or pain in the neck or throat.
Tests that examine the tissues of the neck, respiratory tract, and upper part of the digestive tract are used to detect (find) and diagnose metastatic squamous neck cancer and the primary tumor.
Certain factors affect prognosis (chance of recovery) and treatment options.

Exactly! I had an unknown primary. It accounts for only 1-2% of SCC H&N cancers. My Oncology Team believe it started on the left back of tongue and my body healed the initial infection but it spread to my lymph nodes. Being that it was HPV related, the prognosis was more positive. SCC doesn't necessarily have to start outside the body. It can start in the entire Head and Neck area from mouth/tongue to nasopharynx to throat to larynx and well as anyplace in between.

That's where I'm baffled. By the time I suspected something was wrong, the node in my neck was visible and didn't respond to antibiotics. Michael's node clearly responded and resolved based on his posts. There was no other mention of this until this post which originally was heart related.

As has been mentioned, something just doesn't feel right here. How can test results change so drastically in less than two weeks? I'd like to know what the official diagnosis code is. I know that other than the swollen node I felt "Ok". By the time I was diagnosed (within three months from first symptom), I was starting to feel ill and by the time I had the surgery to remove the cancerous nodes, I felt sick and was in constant discomfort.

Anyway... I guess we'll see. Regardless, I wish you healing Michael.

Positive thoughts

MyNameIsTerry

28-05-16, 06:17

When Michael had his lymph node issue he was getting pain in it, it increased as he prodded it BUT he told me it even decreased. He also said he had abscesses in his mouth due to problems with his teeth and I can remember saying he needed a dentist to look at that and how his swelling lymph node was likely connected as it was so close.

His internist of many years would surely have looked in his mouth and checked that as it would be a big tick in the box for why the lymph node was swelling.

---------- Post added at 06:17 ---------- Previous post was at 02:59 ----------

Dr made rounds today.Says lungs full of nodules and possible lung cancer also doing biopsy on lymph node that has been enlarged for over a year. Thinks possible lung cancer advanced to throat and lossibly brsin and arms. Wony know to much more until results from biolsy given to pcp after discharge because of medicaid. This leaves the results of all test in future and past to go to new pcp.So will try to deal with everything day to day but have feated this even before my trip hear. Symptoms and feelings almost confirm what I feared to a perfect match.
Have been mentally trying to prepare myself for surely what I know to be true. My mother in law passed away two days ago.Life is very hard for all involved in our family and especially hard for my wife and immediate family facing this possible diagnosis with me.

Squanderous cell carcinoma of the lymph node. They think its in the lung no confirmation for sure yet. Heart issues problems on the nuclear stress test and giving meds but not working. Angiogram is next if I make it. I feel so bad right now. Afraid to go to sleep because I am so weak. I am so scared. Suppose to see an oncologist right away but I am not sure I will make it. There is something going on that is making me feel so very weak and out of breath but one doctor said that he thought the oncologist could take care of this quickly but there is also something going on because I really feel as though I will pass away any moment. None of the doctors are being forthright and telling me anything for sure and they aren't for sure what is causing the decay so quickly. At least I got my wife here with family so she isn't alone. I don't know what else to say and I am so weak I am supprized I was able to write here. If I make it ,will try to get wife to sigh in and report. Pray for me.I wish this had just been anxiety but I had a feeling it wasn't . Thank all of you for giving me courage to make it here and bring my wife to complete a quest to make sure she would be ok. God bless you all and thank you for everything.

I thought I would have a look at what Michael has said about all this over the last year. I know we talked about this about a year ago and I was sure he had been seen by multiple doctors and this should hopefully show that:

11/03/2016

Hi,

I was just curious. I was last at the doctor's office 7 months ago. He told me I was healthy , no cancer, and I have had blood test and was in the hospital about a year ago and checked out and monitored. Everything is suppose to be good and everything checked. I have been putting off going back to the doctor although I should have gone back at least a month ago for medicine refills and general blood work and check up.

My doctor told me my heart is in good shape and my heath is good so I have been nervous worried that his observations may have changed over the last seven months. I have been getting more and more anxious about going to the doctor although I know I have to go soon.

27/03/2016

I wish we could find out whether things like the breathing would come and go but think I probably already know the answer..Probably not.. I would feel assured its anxiety. I know that Fishmanpa says that cancer and illness progresses and doesn't come and go. He is a survivor of multiple illnesses . I have had a lymph node swollen in the corner of my jaw close to the neck muscle and its gets rather large somedays but seem to go down and never disappear so he says that probably rules out something serious but I think stress and sleeping bad and worries causes a lot of our anxiety. We have an upcoming move in a few days and I have been really stressed about it and only since we decided to move I have had the breathing issues.. So I am thinking probably anxiety and sure hoping so. Thanks for chiming in and hope you feel better soon too .:shrug:

24/04/2016

For the last few days my muscle in my jaw/face feels like it is a knot but I cannot feel a knot. It feels like its pulling when I talk or when just moving my face. I have tmj and wonder if this could cause this as it on that side my facial fat has dropped down because of age I guess but its really bothering me, I feel as though it might be a stroke coming on or something. They only reason I haven't totally freaked out is that my wife said she gets this sometimes too.

Also I have had a knot under my right jaw in front of the neck muscle that is nestled in between the two and most time is hard to feel but for some reason seems swollen in the last few days and hurts. I have had this knot for over a year and went to the ent when it was really swollen and the bottom of jaw was swollen and that side of my face and jaw was swollen. The doctor gave me antibiotics that took down most of the swelling but the knot never went completely down. The ent said that he didn't see anything sinister when the swelling was going on and he pushed on the knot and ask me if that was it and I said eek yes .. it hurt when he did that.

My doctor had done blood work and said there was no cancer but then the knot that I am referring to never went down all the way . Although it is even swollen right now its not really that big. It feels like the size of a lima bean and my wife says its always been about that size and seems to go down sometimes but I wonder if this is because it is tucked right between the muscle and the jaw?

I am so scared its a tumor or something bad and worried since it hurts. The doctor said it was probably because of sore throat and bad dental health and sinus issues. I never asked him about it again. I haven' t had blood work in over a year . If this was cancer could it not have been detected on the first time and maybe has growing or something since I had blood work or the ent checked it? Could they have missed it?

08/05/2016

If you had throat cancer would swallowing difficulty be constant or come and go?

Would you have fever and if so how much and all time?

Would your ears be stopped up?

My symptoms. Ears stopped up but not so bad during the day . At night I start to choke in the evening air and neck muscles seem to spasm.

My ears stop up so bad I can hear my heartbeat and my neck muscles and breathing and its hard to swallow. During the day my swallowing isn't so bad.

I was wondering if you had swallowing problems would you have it all the time or just at night?

My throat seems to be inflamed yet is not red or nothing looks sinister.

I also am very very tired all the time and feel as though I can't breathe.

I was in the hospital about a year ago and they made lung xray and did all kind of blood work .

I can' figure out if I have throat cancer or just feel bad with allergies .

Now look back to an earlier date:

21/11/2015

I have had a lump for almost a year or a little over a year in the corner of my jaw. My doctor said at first that he thought it was a salivary gland swollen and sent me to an ent.

The ent said it was just a lymph node and said if I had any other issues to come back to see him but wasn't concerned about it because he and my doctor said it was probably from ongoing infection of my teeth from deterioration.

Thing is that it is weird.. some days is seems to be popping out and so swollen and I can feel it down into my neck ...other days it seems that it is barely there.

Other days it seems swollen and I gently message around it a little and it seems to subside ,not all the way but almost.. I don't get it. I don't want to go the doctor again with it or when I go to the doctor I don't want to mention it again..I get scared and worried about it.

After thinking about it.. I wonder if maybe it is a Aneurysm that puffs up and then when I gently message it , it goes down for a bit? Wouldn't a aneurysm get bigger instead of puffing up and going down all the time?

When it was real swollen one time the doctor gave me antibiotics and it went almost all the way down but never went totally down..so I don't know what to think about it anymore. I am so tired of dealing with it all the time.. but scared to ask the doctor about it.

It seems like everyone that post about lymph nodes here has issues with theirs coming and going and never going down totally. If you have teeth issues and allergies and such.. would this lymph node continually go up and down?

PS, how come you can't post photos here anymore?

I was talking to Michael long before this and he mentioned lots of things he was worried. I know we had spoken about the lymph node and teeth issues but I would have to check my aged PM's to be sure when.

BUT my point is that this lymph node appears to have been like this for a very long time, had gone up & down, been seen not only by his regular doctor but also an ENT via referral. These guys attributed it to his teeth issues and I don't believe they would have taken his word on that - they would have had a look. So, for SCC in oral form (sorry, I was only thinking skin before) surely they would have seen something?

For this to be happening now, at what point did this up & down lymph node change into this situation?

I was talking around this time from what I can see:

21/01/2015

I was suppose to go to the doctors today but they called and rescheduled it for tomorrow. That is kind of nerve racking since I anticipated going today and getting it over with..didn't happen now i have to wait and worry all evening again till tomorrow.

I have a lymph node that is from the edge of my jaw that goes down my throat towards my adams apple..If i measure it with my fingers it is like a circle about 2cm. I think from what I feel its hard and immovable .I don't have fever and haven't since I have had it but there is something weird going on with it..It seems to get larger at certain times during the day and then at other times it seems to get smaller..my wife looks at it all the time and notices it..When i lean my head a certain way it kind of hurts. On that
side i think i have an ear infection and also my throat feels a little sore and my tooth on that side was abscessed about a month ago but no more.

So there are plenty of reasons why it is swollen if it is a lymph node. I am worried because someone told me they could swell and cut off your breathing and your swallowing..So far i guess I have been lucky but im wondering .. this is my only lymph node that is swollen and I have no others swollen anywhere on me. i don't think its glandular fever or stone or an aneurism on the main artery there because there is no pulse in it.But the fact that it goes up and down makes me wonder what is going on.

I know tomorrow the doctor will know but in the meantime i worry about what it could be and what it could do.. once again no fever and for the most part no pain but every once in awhile. Would anyone know why it would go up and down that fast?

22/01/2015

Hi,

Thanks for writing and I hope that is the case. I went to the doctor's today and he asked me what I was there for. I said I think I have a swollen lymph node and he said Yeah...I can see it from across the room. He examined it and ask if I had any fever or any other nodes on me anywhere. I ask him what it could be from and the first thing he said was oh....among ex smokers there is a lot of mouth and throat cancers and salivary gland cancers but i don't know it could be from cold, flu,sinus,dental...who knows and he felt and said its pretty good size..im sending you to an ent and start you antibotics...Ok..freak out.. he took blood and urine and sending me to an ent tomorrow and after leaving the doctor's the lab called and said they dropped the label for my blood so could i come back tomorrow because of they lost my blood.Since I was seeing an ent there tomorrow I told them no problem but i was worried about whether or not something would show up in my blood and they didn't have it the whole time but they did have a urine sample..could they tell if i had something through that? My doctor put me on clindamycin since im alergic to pencillin and I start taking it today..I hope it isn't too rough on my stomach since it is known for that.. it is used for all kinds of things ,malaria, and just about anything that ails you including ache..Anyway my wife had her blood done to and they called when we got home again and the doctor said he called her in some antibotics as she had a kidney infection of some kind that he didn't know what it was or how long she had it ..so when it rains it pours...I am hoping that my node is like yours.. it was huge to me today but seems to be going down now in the evening.. I hope mine turns out to be nothing..I hate going to see another doctor tomorrow and if he wants to put things down my throat or nose or anything oh well he isn't ..

26/01/2015

This thing is freaking me out.. When I wake in the morning ,its almost like it isn't even there and then in the evening it starts showing up and my jaw and ear feels tight. I am taking a super strong antibiotic especially for whatever this is and it seems to be working but it scares me with it seeming to swell back up some at night or evening . I just want it to go away but feel like on the right side of throat that hurts a bit when i swallow...now im worried about throat cancer..but I was just in the hospital about three months ago and they did everything to test my blood for everything..I am just about to lose it because I don't ever have fever or any other real symptoms...My worry is whether it is a salivary gland swelling or just a lymph node..My doctor said it seemed like a little salivary gland problem but then it seems more like a lymph node issue..I have to go tomorrow and get blood work done and I haven't had any done in three months and worried that something is going to show up since I had blood work done three months ago..this is like a nightmare .. I just want it all to go away..

26/01/2015

Im freaking out!!!!!!!!!!!!!!!!!! I need information as quick as I can get it. Anyone have issues with salivary gland issues or lymph node issues or both? At this point I am taking a very strong antibiotic and it seems to be working but in the mornings I wake and it seems like the swelling in my neck under my jaw and around my ear is flat and gone..during the evening it seems to get puffy again where I can feel an outline of it and its a little puffy feeling. Can salivary glands do this or lymph nodes? At this point I don't know which I have wrong with me because I didn't get to see the ent. The doctor said he thought I might have a salivary gland problem and he referred me to an ent and he gave me some very strong antibiotics. My wife says that when you have lymph node issues or salivary gland problems and swelling ,the swelling always swells back a little in the evening.It doesn't sound right to me..why would that happen? I haven't had any fever the whole time with this swelling and no real symptoms of salivary gland issues ,i.e blockage,cancer etc.. so im not sure what to think..I just need someone that has experienced these things to help me through this and tell me their thoughts as what might be happening. Please reply as soon as possible..thanks

27/01/2015

I had a rather large swollen lump under my jaw that was swollen into my neck and jaw..the doctor said it might be a little salivary gland problem,but I don't have the symptoms of that kind of issue. At the moment I have been on the antibiotic for about four days and the swelling is almost gone.It was swollen in places I did not even realize until the swelling was going down. My question is that if this is cancer would an antibiotic reduce the swelling of the lymph node or not have any affect on the swelling if it was cancer?

28/01/2015

Hi Terry and thanks for answering this.I have just run out of antibiotics and the swelling isn't all the way down...does that mean anything? Also where the swelling is my jaw feels kind of tight but I do have tmj. Im just want this thing gone.i don't have any fever and haven't the whole time so i take that as a good thing. I never went back and gave blood again after they lost the first vial but they did have urine to test,would that give them any indication about my health? The whole thing has upset me and I will probably go back tomorrow or the next day to get my blood taken again.The fact that the swelling has gone down this much probably rules out cancer right?

29/01/2015

I have been on the antibiotics for seven days today was my last one . Its gone down much of the way but still a little there. As for the pain it hurts a little off and on and my jaw feels a little tight off and on. I guess that is a good thing that it has reduced in size but as I said I just want it to go away . I guess I should ask for another seven days .

30/01/2015

Im pretty sure its got something to do with a recent abscess. It probably got out of hand and caused my lymph node to swell up. My teeth are terrible and i need to see a dentist but keep putting if off. The node is almost all the way down but in that area it has always been a little more full than the other side. I don't know if I told my doctor that or not. He did a blood test and urine.. Saw the report last night. I am taking more beta blocker than ever before and also a diabetic oral med and three blood pressure meds and saw where he was going to recommend me taking a statin. My bad cholesterol is up my good is down and my triglycerides are high.. all since starting to take higher beta blocker dosages and the diabetic med .I read online last night that beta blockers can raise all those.But they put me on a statin one time before i stopped it because of side effects.. he wants to put me on it again at a lower dosage. Its terrible because i never had cholesterol and high triglycerides before so this is worrisome to me. I don't want to take another medicine also they want to raise my diabetic med because my sugar was high the day they took it but I hadn't fasted before they took the test..also i was stressed more than i had ever been.I read between those two and the another med it could have caused my sugar level to be high..I am so confused..i feel like a drug addict and dont want to go on.

07/02/2015

I have what I think is a swollen lymph node but maybe part of the salivary gland im not sure which.. but during the day it seems to almost be invisible although I can feel a little of it there but at night it seems to swell some and then back down in the morning.. Im not sure what is going on but does this sound familiar to anyone here? Please advise..thanks..

12/02/2015

I have what I was told either a swollen lymph node or salivary gland infection that has swollen at the edge of my jaw. I took antibiotics and it seemed to go down some. It almost went all the way down I think and last night I was feeling of it and my wife started pushing on it and it began to hurt and started getting bigger again.. Could it be a swollen lymph node that got irritated again and started to swell or could it be a Carotid artery aneurysm?

Surely my internist of 40 years would know the difference.. He sent me to a ent the same day he saw me but I missed the appointment and im worried that it could be a Carotid artery aneurysm and not a swollen salivary gland or lymph node..Now it feels tight in that area and it seems to be tight around my ear.. could this be a Carotid artery aneurysm instead of a swollen lymph node or salivary gland infection?

I left word at his office that I missed the ent appointment but did not hear back from him.. does that mean it isn'tre really serious or could it be something bad if he didn't call me back or ? Im really worried now since it seemed to be going down and now feels swollen some again and is tight around the jaw where it is.. please help?

19/02/2016

I finally went to the ent today and he examined me and did not find anything he considered suspicious and the lymph node that had gone down he pushed on very hard.. to where it hurt and ask me "is that it" I said yes and that hurt.. He said seemed ok to him. I got worried because every time I have ever rubbed over the lymph node it has irritated it and caused it to swell. On the way home it started hurting and now .. it seems a little swollen again.. Do ent's hurt when they examine you ? and if so will the swelling go down again?

02/03/2015

I went to the doctor and he gave me antibiotics for swollen lymph node. I did not realize how swollen it was until the swelling started going down. I was referred to an ent and then back to the doctor. The ent pushed very hard on the lymph node and it hurt. He asked is that it.. and I said yes. It hurt and hurts off and on since then..The swelling had gone down almost all the way .

I went to my doctor and he said everything was good and no cancer or anything but he said there was a little residual swelling but nothing to worry about. The last couple of days it has been hurting and my jaw hurting and my neck feels tight. I just felt of it and it feels swollen but my wife says it has never been so small..

I just don't know what to think anymore and tonight I turned my head and coughed and my throat was hurting when swallowing and it stopped but starts on and off again.. Im really worried as I feel very tired my ears hurt and my throat hurts and my lymph node hurts but I have no fever. Is it normal for a lymph node to hurt forever like that?

I have seen two doctors that say the node is ok.. so what is the problem here?

04/03/2016

Ent and my internist both said just a little residual swelling probably from my teeth. It hasn't really swollen but feels tender when I move my neck or sometimes just achy. The doctor said that it was all clear when I was there less than a week ago.. so I just wondered if they can stay achy and sore a little after the swelling subsides.. It just irritates me to hurt there..is that normal?

I can understand how the issues with the lungs would make him feel very ill now but I really still think his lymph node from before can't be linked as that would have been metastised a long time ago and he would have been much worse. The same with his throat, which has been on & off, and the treatments for when I think he had strep throat.

I still hope this is something else. I have put the above there not just for us but for him & his wife to consider (and save them some time) in getting this to another doctor for a second opinion.

We are thinking of you buddy. Don't lose hope, you've never given up before!!!

KatiePink

28-05-16, 07:53

This thread is very concerning, this was on the 17-05-16 last week..

Went to the ER yesterday . The rocking in my heart has reached epic proportions . Now even with standing it rocks and its driving me crazy. The ER doctor did ekg ,nothing unusual there. They monitored me for five hours and did not see anything other than my blood pressure going up and down but the heart was doing ok according to them. Also they did thorough chest xrays from throat down on front back and sides and also ct sccan of tissue study of throat ,chest and neck , nothing there and also a complete blood work up and nothing there. They did not do an echo or any other heart test besides monitoring and also ekg. I ask the ER doctor what caused the rocking and he told me stress . I also told him about hearing my heartbeat in my ears and he said nothing. He did not resolve the skipping feeling nor any other heart issues. According to him everything was as it should be. I started reading about issues at that hospital with all kinds of stuff and also worried now that the test they gave me may not have even been looked at. The whole hospital and staff gave me the creeps and the operation of everything. I hope the doctor is competent and also did look at all the test and was correct in what he was telling me . I left there yesterday glad that I was released but then soon started worrying whether things were like they should be. Also the rocking motion seems to be very strong today and worrisome.

The only people that were nice there and tried to make me feel better was the orderly's and the staff on the ct scan and also xray but other than that, the doctor and nurse was very robotic and the admissions were nonchalant and the triage person very cold and not comforting at all. It was very traumatic for me and I miss my hospital and doctor and nurses in Oregon.

So everyone is telling you to go to the doctor but it did not help this time. Very sad worried and scared that there is something terrible wrong and can't fix it. Also the last two days I have woken very dizzy. My blood pressure was very high in the ER but no one seemed worried and the Nurse was really mean to me and screamed maybe I had not been taking my bp medicines and of course I have so it was all miserable. I am almost at the point I would rather die than deal with people like that again .

How could a CT scan of throat chest and neck come back clear one week ago, the cancer is of a lymph node in the neck right? Can it develop like that in one week?

I hope this gets looked into

Best wishes mnaha

MyNameIsTerry

28-05-16, 12:35

Spot on, Katie.

Even if it was some bizarre timing incident, how the hell has it also travelled to the lungs in that week which were also clear? Does a cancer travel so fast?

IF anything bad happened with that lymph node, it wasn't when Michael was posting about it as even he was seeing it go up & down.

Fishmanpa

28-05-16, 16:49

This thread is very concerning....

I agree.

On a previous thread from 5-8 about throat cancer worries, I asked the following...

I do have a question. I was just reading through a few things and noticed you posted this in Dec. of 2014 when you were worried about your body temperature. (http://www.nomorepanic.co.uk/showthread.php?t=163527)

I have cancer to start with...

I haven't seen a reference before or after this in any of your posts. What kind of cancer did you have? I would have to assume you're cancer free at this point almost a year and a half later?

Being a survivor, I have insights as to the diagnostic process and procedures. I also have insights to this situation thus I'm treading carefully. A biopsy takes a few days to get the results at the least. CT scans do show nodes in question. X-rays do show nodules in the lungs. SCC Cancer (I'm assuming that as there is no such thing as "Squanderous" Cell) while it can and does spread rapidly in some cases, does not/cannot spread that quickly nor does it spread to to the arm. I'd still like to know the classification of the diagnosis.

I hope you find peace and healing both physically and mentally.

Positive thoughts

MyNameIsTerry

29-05-16, 05:22

On that linked thread:

Reason: checking on possible strep throat coming back as it caused tachoycardia also high bp also sugar levels. I have cancer to stasrt with ,thanks for your support you are both so kind.

AND

Just got back from the doctor..just this moment and he said checking temp was ok. He said that it is a good thing to be deligent to know whether to expect trouble . He also said that the temp at 95.9 to 100.0 is ok but anything higher than that I might expect tachycardia. He said to keep doing whatever I was doing and he was going to line me up for full work up in the following weeks comparing specialized test other than test that was in the hospital and also said that their test were vague to say the least and anything I could do to monitor my body was a good thing. He is aware of my health anxiety but knowing what he knows says I have every right to monitor my health and the more I can learn about my condition the better. He likes people that take charge of their own health. As far as looking things up on the internet. I have been doing that since the beginning of the internet . I hate medical things ,and I do look things up that pertain to my illness.. Im not sure where you are going with this...other than yes I do have health anxiety..if you had cancer would you monitor if you were having fever in case your heart went 150 to 170 and wouldn't slow down when you get a sore throat..I think you would be peeing in your pants.. if you want to know what i think.I also was just curious about what certain people think about body temps and was curious what people on here have heard about it. My doctor said today .. 95.9 was normal in the morning and 98.2 was normal for evening, so no more need for me to ask people in here. He is 40 years internist and specialist and knows..so why bother asking anyone here..im sure there isn't anyone else here that has that kind of background.. thank you

---------- Post added at 16:13 ---------- Previous post was at 16:11 ----------

PS nobody ever answered my question and another thing..I hate looking up things on the internet that concern health..you are right..it is very very hard especially when you know what you have..and finding things that terrify you .. you pray every night that God take you from this life.. its torture knowing you are slipping away everyday but you do the best you can to get by

Sadly, the debate was derailed by faux outrage so other posters didn't get to the bottom of it.

Well months after this I was speaking a fair bit with Michael for a short time and cancer was never mentioned. A previous cancer can change the playing field, although people can suffer more than one case in their lifetime with no connection (like my GF's mum who has ling cancer now but had bowel cancer 30+ years ago), so we would all be more careful in advice and be wary not to say see a GP rather than learn more to anxiety. Discussions about cancer later were always "could I", the typical HA concerns of many on here.

Regardless of this, I still don't believe what has happened, everything has advanced too quickly. Something is wrong now or has been wrong in previous assessments. But the lymph node is a debatable one and perhaps the medics are making incorrect assumptions? Whilst biopsies can be inconclusive, they are not 100% tests in that respect, they will always keep going like in my GF's mum's case where the biopsy was inconclusive after the x-ray showed them up and then a PET scan made the final diagnosis.

Fishmanpa

29-05-16, 19:28

"i still believe" said I should aplogize for not telling everyone I had cancer or strep throat..which I see has no reason to be mentioned in original question..

I think if one had cancer prior as I did, then some anxiety about a recurrence would be understandable and it would have been at least referred to other than in that one thread. That being said, there has been no mention of this prior or after.

This is confusing all the way around. Maybe when Michael logs in again he can provide some clarification.

Positive thoughts

KatiePink

29-05-16, 22:08

mnaha

29-05-16, 22:58

I think if one had cancer prior as I did, then some anxiety about a recurrence would be understandable and it would have been at least referred to other than in that one thread. That being said, there has been no mention of this prior or after.

This is confusing all the way around. Maybe when Michael logs in again he can provide some clarification.

Positive thoughts

I am not sure where thata post came from . I don't remember it and its out of context. If you could link it here maybe I could shed light on it.

KatiePink

29-05-16, 23:01

It's the thread titled 95.9 from 2014.

Hope you are well mnaha

mnaha

29-05-16, 23:03

I had a look back not at the threads but post history, and from all of what read I can only conclude that there was no cancer previously. It definitely has not been mentioned/refered to again.
There are numerous threads where people had asked about cancer, and if anyone had had their fears confirmed, where the OP has been part of the discussion but no mention of his cancer.

Also posts where he has said the doctor said no cancer, its very confusing but what is clear from looking back is that there's clearly a long history here.
The reason I looked back is because when I first read this thread it sent me in to a panic, having health anxiety I always doubt the professionals and although rarely mistakes can be made, its not usual to see that on here.

Especially with a cancer diagnosis.
I hope the OP is well and in his own time could update us so people viewing the thread can understand what has happened.

Will do my best to use the energy that I have to update and fill everyone in on just what has transpired. I am sorry if I have sent anyone in a panic but I am just as shocked and belittled as anyone could be getting news like this and just so matter of fact way. I am due to go to oncologist on tue and cardiologist on weds and will try in the meantime to clear any misconceptions up that I can as I have energy to. All I know is my world is crashing around me and I am in a tizzy trying to make sure my wife and family will be taken care of and things will be settled in case something happens to me. I have given my wife my name and password here just in case something happens .Anyway there are definitely some issues with malpractice and other medical mistakes but too early to know just what.

KatiePink

29-05-16, 23:07

Will do my best to use the energy that I have to update and fill everyone in on just what has transpired. I am sorry if I have sent anyone in a panic but I am just as shocked and belittled as anyone could be getting news like this and just so matter of fact way. I am due to go to oncologist on tue and cardiologist on weds and will try in the meantime to clear any misconceptions up that I can as I have energy to. All I know is my world is crashing around me and I am in a tizzy trying to make sure my wife and family will be taken care of and things will be settled in case something happens to me. I have given my wife my name and password here just in case something happens .Anyway there are definitely some issues with malpractice and other medical mistakes but too early to know just what.

There's no obligation for you to update us, you look after yourself first and foremost. I think we were shocked by this diagnosis so naturally people went back to see how this has happened. That's where the confusion started. As nobody was aware of any previous cancer and the fact you so recently had the all clear

mnaha

29-05-16, 23:07

Exactly! I had an unknown primary. It accounts for only 1-2% of SCC H&N cancers. My Oncology Team believe it started on the left back of tongue and my body healed the initial infection but it spread to my lymph nodes. Being that it was HPV related, the prognosis was more positive. SCC doesn't necessarily have to start outside the body. It can start in the entire Head and Neck area from mouth/tongue to nasopharynx to throat to larynx and well as anyplace in between.

That's where I'm baffled. By the time I suspected something was wrong, the node in my neck was visible and didn't respond to antibiotics. Michael's node clearly responded and resolved based on his posts. There was no other mention of this until this post which originally was heart related.

As has been mentioned, something just doesn't feel right here. How can test results change so drastically in less than two weeks? I'd like to know what the official diagnosis code is. I know that other than the swollen node I felt "Ok". By the time I was diagnosed (within three months from first symptom), I was starting to feel ill and by the time I had the surgery to remove the cancerous nodes, I felt sick and was in constant discomfort.

Anyway... I guess we'll see. Regardless, I wish you healing Michael.

Positive thoughts

Nothing could be more bizarre than what I am feeling. Thank you for your postive thoughts and will let you know as soon as I know something. Thank you for being here and your kind words. I am in shock and just feel sick and alone ,and as you know..FMP..its very scary and makes you feel so alone inside and worried and so many other emotions. As I said please pray for me and as soon as I know anything I will surely let you all know. Once again thank you all.

Mercime

29-05-16, 23:56

MyNameIsTerry

30-05-16, 05:03

I will go so far as to say I do not believe what has been said. As has been pointed out, cancer in the lymph nodes happens as a secondary, not primary. Lungs "full of nodules" would not be missed, nor would there be spread to "the brain and arms". Scans/bloods/extensive examination would have picked this up without a shadow of a doubt.
Those that have had cancer, or those that have lost someone very close because of it, especially a squamous cell carcinoma (which can occur in different places out of sight, not just the skin), know that they do not occur in the manner that has been stated here. They do not suddenly appear, let alone spread like wildfire in the space of a week.

It does not happen. No ifs or buts, those are facts. Why anyone would want to make up stuff like this is beyond me, but I am sure that is what has happened. It is very wrong.

Since writing the above, I have received a private message from the poster, giving much more information than he has supplied here, or elsewhere. He has told me he's not a liar, but won't post here again. I think if he was being honest, he would have disclosed his 'medical' info on this thread, rather than to me. But for the record, it has made me more resolute in the belief that untruths are being told. Secondary cancer, which this apparently is, does not lie unhidden. Primary cancer does not lie there quietly doing nothing, especially when it has been untreated for a good few years.

If he wishes to post and clarify, or point out where I'm wrong, I would be grateful.

As pointed out above, it was my mistake looking at SCC from a skin cancer point of view.

"Primary cancer does not lie there quietly doing nothing, especially when it has been untreated for a good few years." Really? So, you are not aware that a good number of lung cancer cases are ONLY picked up at terminal stage with no prior symptoms? Like my GF's mum who presented with breathing problems and within about 5 weeks was diagnosed with stage IV? You are aware that it passes through stages 1-4 in total and that most are picked up at stage III & IV as opposed to the earlier stages for the simple reason that there can be no symptoms?

FMP also explained his cancer above and that happened pretty fast from what he has said.

Lymph nodes cannot present as a primary, only a secondary? So, lymphoma doesn't exist then or they have got that all wrong? Maybe you are being specific to this thread, but that's unclear from that statement to me as it appears general?

The only thread about cancer could be perceived in more than one way, in my opinion, but with it being derailed it was never properly discussed hence causing confusion on here. That could easily have been a previous cancer with no link to this one so we can't assume it has continued through these periods of varying symptoms. One possibility alone is that Michael has been fed incorrect info, misunderstood what he has been told or even that he is catastrophizing. I'm not going to point out the other possibilities to answer the rest as I don't believe it will do him any good in his current mental state but this is why there are questions.

Since I've been speaking to Michael for over a year now, on the forum & PM, I DO NOT believe he would make anything up. Until the full facts are established I think people should be very careful what they imply without knowing what is going on. What if you are wrong? You were wrong about another member on here when you joined, who is doing much better now. AND I've already found two errors in your judgement due to your lack of understanding including of a form of cancer I have had to learn about in the last 6 months so you can't argue that you come from a position of complete knowledge on the subject of cancer, like the rest of us can't.

Michael - you are perfectly entitled to post on this forum. It is owned by ONE person ONLY, not any of us. We are just GUESTS as she says in the t&c's. I don't believe anyone else on this thread is implying you are a liar, some of us know you too. What we do have concerns about is where there are issues in the what is happening and whether there are medical mistakes happening, misunderstandings or even skewed judgements where someone with high anxiety is jumping to conclusions. No one is trying to "catch you out", we are simply confused. Like FMP said, he has asked before and he has continued to be supportive of you since so why would he be exactly the same with you if he felt that way? I'm the same there, I just want to help and support you (Carnation & others too) but it's very confusing.

Fishmanpa

30-05-16, 05:55

I will go so far as to say I do not believe what has been said. As has been pointed out, cancer in the lymph nodes happens as a secondary, not primary. Lungs "full of nodules" would not be missed, nor would there be spread to "the brain and arms". Scans/bloods/extensive examination would have picked this up without a shadow of a doubt.
Those that have had cancer, or those that have lost someone very close because of it, especially a squamous cell carcinoma (which can occur in different places out of sight, not just the skin), know that they do not occur in the manner that has been stated here. They do not suddenly appear, let alone spread like wildfire in the space of a week.

It does not happen. No ifs or buts, those are facts. Why anyone would want to make up stuff like this is beyond me, but I am sure that is what has happened. It is very wrong.

Since writing the above, I have received a private message from the poster, giving much more information than he has supplied here, or elsewhere. He has told me he's not a liar, but won't post here again. I think if he was being honest, he would have disclosed his 'medical' info on this thread, rather than to me. But for the record, it has made me more resolute in the belief that untruths are being told. Secondary cancer, which this apparently is, does not lie unhidden. Primary cancer does not lie there quietly doing nothing, especially when it has been untreated for a good few years.

If he wishes to post and clarify, or point out where I'm wrong, I would be grateful.

You are correct in that SCC infection of the lymph nodes in the neck are a secondary infection spread from a primary site. 90% of all head and neck SCC start somewhere in that area. Throat, back of tongue, nasal pharynx etc. As the infection spreads, it affects the lymph nodes and can spread to the lungs and elsewhere.

In my time on the head and neck forums during my battle, most presentations were horseness, difficulty swallowing, a hard immovable node in the neck area that grew etc. SCC is often detected while in the later stages and my diagnosis was Stage IV. Even so, the signs when it reaches that point are unmistakable.

I believe that's where the question comes in. I can tell you from personal experience that like Michael, I had an infection and the nodes in my neck were swollen. The antibiotic resolved the infection but a node remained. The thing is, it grew! It didn't get larger and smaller. It was rock hard and immovable. Several courses of antibiotics didn't help. In the 3 months from the first time I noticed it, it went from about 1cm to 3+cm! Also, the CT scan clearly showed the node. I had x-rays of my lungs which were clear. The ENT did a FNAB and it came back positive and HPV. The PET scan clearly showed the cancer. By the time I went in for surgery 3 months past that, I had two 5+cm nodes infected. It looked like I had the mumps on the left side of my neck!

That's where the question comes in. In the year plus posting history, nothing was found! A week prior to finding said infection it was clear. If indeed the cancer was present, and the fact the SCC is an aggressive cancer, Michael would be a very ill man. If in fact, there is evidence on the all the tests, x-rays and scans prior to this, we're talking gross negligence in that none of the doctors or tests saw this. Personally, that's where my doubts and confusion come in. I too have communicated privately and have read the extensive post history from a previous user name and I've not found the mention of having cancer before. There is one post which indicates testing for renal cancer but after testing it turned out to be a benign cyst and the thread reverted back to heart fears. In fact, the history primarily has to do with heart fears which is what the current history reiterates. So to say "I had cancer" is a gross misstatement and an insult to those that have or had it.

Just as a personal aside. I have a lump on the lower right side of my back. It's been there for some time (years). I believe it's a lipoma. Recently (the last month), I've been having some discomfort in the area. The lump has grown a bit and I also believe that it's causing the discomfort as when I sit, it's always being pressed upon. That being said, having had cancer, there's a niggle of "uh oh" going on. I can honestly say I have a bit of "scanxiety" about it. I have a doctors appointment in a couple of weeks and I'll bring it up then. The point being here, if Michael is a survivor of cancer, and his fears concerning nodes have to do with it, why wouldn't it be mentioned? It would make perfect sense to be fearful of a recurrence or a new infection if you're a survivor. i.e. "I had **** cancer and I'm afraid I may have a recurrence or a new infection". It would make perfect sense to have this fear but it never was mentioned.

Anyway... I'm rambling. In the big picture what matters is Micheal finding a healing path and living life to the fullest.

I wish you well Micheal. I hope you find the answers and peace you're seeking.

Positive thoughts

Carnation

30-05-16, 10:45

Terry, I know Mercime and she is a very genuine and caring person.

I don't think she is intending to come over as malice, but she can obviously see more in to this situation.

I think with the ongoing condition concerning mnaha is very puzzling???
I know you have been conversing with mnaha for a long time now and I have a good few months of getting to know him myself.

We know that mnaha seeks constant reassurance of his wellbeing and I have read fishmanpa constantly comforting mnaha and feeding him facts on his cancer and heart issues.

I am finding it quite disturbing and when I first read that mnaha was rushed to hospital, I got so upset that I burst in to tears.

Then I start reading about this fact and that fact and then we don't hear from him for some time, then he comes on and tells us that his wife will continue to keep us informed, then there are more discussion on his condition and treatment and then he comes back on again and says the same thing, almost relating to his limited time on earth and telling us his wife will let us know.
It is all very disturbing!

So, I will refrain from posting on this thread anymore and reading and replying.
Due to my personal circumstances with my poor Mum who has been fighting for her life, I will not involve myself with mnaha any further..........

Mercime

30-05-16, 11:12

As pointed out above, it was my mistake looking at SCC from a skin cancer point of view.

"Primary cancer does not lie there quietly doing nothing, especially when it has been untreated for a good few years." Really? So, you are not aware that a good number of lung cancer cases are ONLY picked up at terminal stage with no prior symptoms? Like my GF's mum who presented with breathing problems and within about 5 weeks was diagnosed with stage IV? You are aware that it passes through stages 1-4 in total and that most are picked up at stage III & IV as opposed to the earlier stages for the simple reason that there can be no symptoms?

FMP also explained his cancer above and that happened pretty fast from what he has said.

Lymph nodes cannot present as a primary, only a secondary? So, lymphoma doesn't exist then or they have got that all wrong? Maybe you are being specific to this thread, but that's unclear from that statement to me as it appears general?

The only thread about cancer could be perceived in more than one way, in my opinion, but with it being derailed it was never properly discussed hence causing confusion on here. That could easily have been a previous cancer with no link to this one so we can't assume it has continued through these periods of varying symptoms. One possibility alone is that Michael has been fed incorrect info, misunderstood what he has been told or even that he is catastrophizing. I'm not going to point out the other possibilities to answer the rest as I don't believe it will do him any good in his current mental state but this is why there are questions.

Since I've been speaking to Michael for over a year now, on the forum & PM, I DO NOT believe he would make anything up. Until the full facts are established I think people should be very careful what they imply without knowing what is going on. What if you are wrong? You were wrong about another member on here when you joined, who is doing much better now. AND I've already found two errors in your judgement due to your lack of understanding including of a form of cancer I have had to learn about in the last 6 months so you can't argue that you come from a position of complete knowledge on the subject of cancer, like the rest of us can't.

Michael - you are perfectly entitled to post on this forum. It is owned by ONE person ONLY, not any of us. We are just GUESTS as she says in the t&c's. I don't believe anyone else on this thread is implying you are a liar, some of us know you too. What we do have concerns about is where there are issues in the what is happening and whether there are medical mistakes happening, misunderstandings or even skewed judgements where someone with high anxiety is jumping to conclusions. No one is trying to "catch you out", we are simply confused. Like FMP said, he has asked before and he has continued to be supportive of you since so why would he be exactly the same with you if he felt that way? I'm the same there, I just want to help and support you (Carnation & others too) but it's very confusing.

Terry, I am fully aware, and I'm sure FMP will corroborate this, that a late stage cancer would not be missed given the amount of extensive testing the poster has had done in the lead up to this supposed diagnosis. I am unaware if your girlfriends mother had numerous scans prior to her diagnosis but it certainly sounds like she didn't. If you have been talking privately with the poster, you would certainly know the same details that were given to me, about past medical history which is pertinent to what has been posted. What I will say with certainty is that an untreated primary cancer does NOT go away. It grows, gets worse. Anyone with a history of this would be extremely ill, and any metastasis would be the first thing being checked. When you are a cancer survivor, these things are known and understood.
As for having a complete knowledge of cancer, I never claimed any such thing. But as an SCC survivor, late stage, I have a fairly good working knowledge and as such, I feel that I can challenge what I know is not true. Is that good enough for you?

Please come down from your high horse regarding who can post what. I have given my belief that the claim made here is wrong, as is my right I believe? As for being wrong about the other poster, you know full well that others felt the same way. A public aspology needed? Fine, if Beckie reads this, I'm sorry to have judged you as an attention seeker who used your threads for purposes other than to help yourself. Do I think it was rude to delete threads where people had taken time to reply? Yes, I still do.

Mnaha had had much support from lots of people. I'm sure he knows full well that that support would be ongoing. I won't support someone who is misleading, whether intended or not. Especially about cancer.

---------- Post added at 11:12 ---------- Previous post was at 11:10 ----------

Terry, I know Mercime and she is a very genuine and caring person.

I don't think she is intending to come over as malice, but she can obviously see more in to this situation.

I think with the ongoing condition concerning mnaha is very puzzling???
I know you have been conversing with mnaha for a long time now and I have a good few months of getting to know him myself.

We know that mnaha seeks constant reassurance of his wellbeing and I have read fishmanpa constantly comforting mnaha and feeding him facts on his cancer and heart issues.

I am finding it quite disturbing and when I first read that mnaha was rushed to hospital, I got so upset that I burst in to tears.

Then I start reading about this fact and that fact and then we don't hear from him for some time, then he comes on and tells us that his wife will continue to keep us informed, then there are more discussion on his condition and treatment and then he comes back on again and says the same thing, almost relating to his limited time on earth and telling us his wife will let us know.
It is all very disturbing!

So, I will refrain from posting on this thread anymore and reading and replying.
Due to my personal circumstances with my poor Mum who has been fighting for her life, I will not involve myself with mnaha any further..........

Carnation, I did not see this before I posted. Thank you. Xx

MyNameIsTerry

30-05-16, 11:26

:doh: And I need to get off my high horse.

The facts are clearly NOT established here whatever you think. There are other possible explanations for what I have read both in this thread and in those linked hence I will NOT be passing judgement on Michael.

Fine, you have no need to support the OP or anybody else around here, you don't know him any more than anybody else on here does. Nobody ever asked you to support him. Those of us who chose to support him did so because WE wanted to, our decision. If we still wish to, that's our decision too. There are many threads on here, people can choose to comment on those that they wish and if someone ends up with a bit more support than somebody else, that's just how it is for many reasons. On recent threads it has been several of us because we know Michael. We chose to.

Fishmanpa

30-05-16, 15:27

I am fully aware, and I'm sure FMP will corroborate this, that a late stage cancer would not be missed given the amount of extensive testing the poster has had done in the lead up to this supposed diagnosis. I am unaware if your girlfriends mother had numerous scans prior to her diagnosis but it certainly sounds like she didn't. If you have been talking privately with the poster, you would certainly know the same details that were given to me, about past medical history which is pertinent to what has been posted. What I will say with certainty is that an untreated primary cancer does NOT go away. It grows, gets worse. Anyone with a history of this would be extremely ill, and any metastasis would be the first thing being checked. When you are a cancer survivor, these things are known and understood.
As for having a complete knowledge of cancer, I never claimed any such thing. But as an SCC survivor, late stage, I have a fairly good working knowledge and as such, I feel that I can challenge what I know is not true. Is that good enough for you?

Ahhh, a fellow warrior and survivor. Now I know why you posted what you did as we both lived it and while no, we're not medical experts, we have the actual life experience. Your above statement is spot on! Medical experts would have seen this prior. Prior cancer would have been mentioned in threads and the experience spoken of. I know, as you do, an awful lot about SCC and we both know it's called "Squamous", not "Squanderous". I bring that up as it's a gross misspelling and one who was diagnosed would know what they were diagnosed with. I get a letter here and there but that was a red flag for me when I saw it. That being said, it is an interesting misspelling as those who have HA "squander" away their time with worry.

Here's to meeting Mr. NED on all our future checks!

Positive thoughts

Shazamataz

30-05-16, 22:26

Fishmanpa

30-05-16, 23:48

Just want to add that the spelling 'Squanderous' could be a phone automatic correction as opposed to an error by the poster.

"Squanderous" is not a word thus a phone would not suggest it.

This whole thread and the contradictions, including private messages and past post history has determined my feelings about the accuracy or lack thereof of the OP.

I wish Michael healing and peace. No doubt he could most certainly benefit from it.

Positive thoughts

Mercime

30-05-16, 23:59

"Squanderous" is not a word thus a phone would not suggest it.

This whole thread and the contradictions, including private messages and past post history has determined my feelings about the accuracy or lack thereof of the OP.

I wish Michael healing and peace. No doubt he could most certainly benefit from it.

Positive thoughts

Spot on.

MyNameIsTerry

31-05-16, 03:56

I've been following this thread with interest, mainly because I myself had a bit of anxiety after Michael announced his diagnosis after complaining of a loud hearbeat, which is something I also experience. Naturally (having some health anxiety) I briefly worried I may be in the same boat and expect others did the same.

It's a horrible situation to think of someone posting dishonestly on here but it's equally upsetting to think someone is reaching out for help and having everything questioned.

I don't know what to believe.

Just want to add that the spelling 'Squanderous' could be a phone automatic correction as opposed to an error by the poster.

Do people understand how autocorrect works? I've got loads of words in mine that don't exist because they are terms used in industry. Autocorrect learns as we do things. So, I'm never going to hinge something so important on something so trivial.

If you punch it into a web browser prefixing it with "Squanderous", it does in fact attempt to correct it for you.

Can anyone remember the deaf text service that has been found to have tons of errors when used for live broadcast?

Also, people can't spell every word. Sometimes they believe they are spelling something correctly when they are not. Try telling some stubborn people they are wrong.

It's strange to claim people wouldn't make an error because they have suffered from something. I guess we all have PHD's though. I have suffered from "roids" since my early twenties and yet I still struggle with the correct spelling, hence always say roids. That's not a word either yet my autocorrect will suggest it because I've used it enough. The same with "the runs" instead of the obvious. I have a blind spot with certain words even though my spelling has always been good (it's my typing that can go a bit off when doing it at speed!), which has worsened due to my anxiety, a known problem considering the neurotransmitter in question and common around here in various forms.

Hindsight bias potentially there. Certainly a reach.

It is a shame that a certain picture is being painted here, carefully in places. I posted up a load of past posts with the intention of helping and I now feel ashamed of what I feel I have become a part of.

Selective responses, I have ignored as I know they won't be addressed when they could pick a hole in someone's judgement.

Even IF there has been misrepresentation, to be honest, and this may be unpopular with some, but I like to understand, to learn. I see far worse things in this world than what some have chosen to see here but then as someone who has been through themes of intrusive thoughts that some would regard as psychotic, sociopathic, perverted, etc I have had to learn this and change.

Lots of "I'm dying" threads exist around here. I don't see people who are or who have people in their lives in that situation or deceased stating their disbelief at the lack of respect for this.

KatiePink

31-05-16, 07:03

I think the looking back through the OP's history was a genuine interest to try and help and also to understand what had happened. The fact that certain things point in a certain direction, naturally people have come to their own conclusion on what they feel to have happened here.

I think the need to establish what has happened is only just because of other people viewing the thread, making their fear and doubts all that stronger.
How many times do people not believe the doctors or still worry after negative results, I know I've been there numerous times.

Regardless of the truth of the situation, as I said before the OP has a long history on the site and it's a shame they are not in a better place but the help that can be offered here is limited due to the fact we only know what is written, we cannot know all the facts. So advice and support is given based on what we read and I suppose people may feel 'taken for a ride' a little, as everyone suffers on here so when you put your time in to advising/helping other's people can naturally feel done over if things don't appear to be true?

mnaha

07-06-16, 00:35

I feel so bad that everyone doupts me here. I am not a liar. My information may have not been exact or timed to where everyone could see the whole thing laid out but I assure you that I would be afraid to lie about something so serious.

I am in Tucson Az . I have been back and forth to St Mary's hospital so many times I think that I know each and everyone of the people that work in the facility. When I came here we were unfortunate to have gone to Northwest Medical Center where they were not only rude but they treated me as a drug seeker.

I assure you I do have anxiety and have probably most of my life but the questions I have ask her have been in earnest over the years and innocence. I have posted under mnaha for three or four years and posted under looking4answers years ago when I was very anxious and living in a very hostile enviroment.

We moved to Louisiana from Colorado where I was hospitalized for severe dehydration and then told that I for all practical purposes had renal cell carcinoma. They wanted to take my kidney and adrenal gland out for masses found on them.

At the time we spoke to a endocrologist that has been around and well respected for many years and she said she would be that the masses were cyst that were there for many years and not doing anything and that there was nothing that showed they were injecting adrenaline into my system. Instread of giving in and have surgery I ignored the doctors and went on with my life for five years never having another scan.

Fast forward to Orgeon. I was hospitalized and nothing was found other than a white blood cell count of 19000 and also prediabetic and they kept me and monitored me for five days and did many many test. I never told them of the other findings and they were not mentioned.

A year ago I had a lymph node enlarge. I went to my doctor who sent me to an ent to check me out. He found nothing but an enlarged lymph node. My doctor declared me with no cancer. Also I had heart test to verify that there wasn't an issue with my heart.

Fast forward to my trip of being exhaustted knowing something was terribly wrong feeling so tired. I went to the ER here at Northwest with elevated heart rate. They did scans and xrays and found nothing.

They were mistaken. I went the very same day to St Mary's hospital where did did scans and neck and throat study and also nuclear medicine study of my lungs also did a nuclear stress test and found something not sure of just what but enough to consider have angiogram. They decided to try meds for right now. At the moment I am diagnosed with maliginant cancer of the head and neck. I think its called squamous cell carcinoma. They haven't staged it yet because they don't know where it came from . I am having a pet scan net week. I have been assigned a primary care doctor and he is directing me to oncologist and also urinoligist because of not being able to use the bathroom and currently have a cathader for the next two weeks until I can see the uriologist.

I also have an apointment with my primary care tomorrow and then an apointment with an ent day after and then uriologist on the 16th and the oncologist on the 15th.

As of now in tucson I have had 7 chest xrays to ct scans of the neck and throat. Another ct scan of the upper body . An mri of the head and neck area and also mulitple other ct scans for what reasons I don't know. The nodules in the lungs are typical of people that live in the desert southwest of the United states and is caused usually by valley fever. At the moment nothing points to those being anything other than benign. Also they found scar tissue on my kidney , they one that had a mass and also looked at my adrenal gland that had a mass which is now at 3 and 1 half cm.

We are bouncing back and forth to doctors and they are taking very good care of me . Everyone has been attenive and kind and caring for that I am grateful. I am in the dark as much as all of you are . I hate having cancer but have been given a ray of hope that it might be taken care of quickly and without big issues. There concern is they can't find where it started and that is the reason for the pet scan in hopes they can and that it isn't something that is bad a spread all over.

So at this point all of you know what I do. All the times I have felt bad an posted here I had hoped it only anxiety just like the rest of you. I did not have to come here and expend energy to explain myself but I have grown very fond of most of you and care about each and everyone of you and the support and kindness you have shown me.

If I can I will be glad to answer anything you ask of me but I assure you I am not a liar nor have I ever been or every will be. I am a anxious scared person just like the rest of you trying to survive. My revelation here was not malice to cause anyone anxiety but to tell those who cared for me enough to help me through rough times what is going on.

I have no malice nor bad feelings toward anyone especailly since you did not know the fulll story but now you do. Whatever you feel for me. I hold no bad feelings toward you and if you want or need to ask me anything please do . I will try as hard as I can to answer.

The only reason I mentioned my wife taking over was just in case something did happen to me and the way I was told the other day scared me so badly that I just knew I would be gone any minute and maybe I over reacted but then how are you suppose to act when told something like that? I am sorry for those who think I am deciving or a liar or anything else. All I have in my heart towards you is kindness and compassion and caring.

As I said as long as I can I will be glad to answer any and all questions directly and honestly ,just ask instead of assuming. Thank you for your responses and for your kind wishes and your hopes and support always. Michael

MyNameIsTerry

08-06-16, 04:59

mnaha

08-06-16, 23:46

Michael,

Something I have learned is that things are not always as they seem in places like this. I wouldn't be the only one to say this by quite a way! Things go on, arguments happen, abuse takes place on PM at times. You can't get on with everyone. Sometimes you can't change people's beliefs and sometimes you can wave facts in front of some and they will argue the whole world is wrong. That's just the nature of the diversity of people and we bring our personalities into the things we do, it's not all about mental health issues.

My point is, whatever comes of this now, you can choose to remain and communicate with people without this recent situation getting in the way. Whether that means resolution or blocking, only you & others will ever know but it won't affect the forum. Trust me on that one.

There's no need to justify your previous user name either, you were open about that when you came back anyway. You aren't the only one who has come back to a new user ID anyway.

What does matter is that you are getting the medical treatment you need to help you recover from this. The anxiety, you know how that works and can continue with that once you are through this current predicament.

Terry, You are a very kind and gracious and warm human being. You are compassionate and have been a big comfort and friend to me over the time that I have been on this board. I do appreciate you being strong enough to come forward and tell me that I am welcome here and that we all are in the same boat so to speak.

I thank you once again for being here for me and cannot express my sincerest thanks and thoughts towards you for making me still feel like I belong here. Anxiety or physical illness, people feel isolated and alone. It always is a good thing to be a comfort to others in need and to also have others comfort you as well when you are feeling vulnerable as well. I thank you for being you. God bless you my friend and may life and blessing shine upon you always. Michael

I am due for a pet scan on this Monday to try to locate the source of my cancer. Also to inspect and trace any other medical issues that are in my body. With all the scans and xrays I have had I feel as though things should be already been brought to light but feel that I am in confident and secure hands and hopefully I will know more when the PET is done. I also have an appointment with my oncologist Friday to start some type of injections. I do not know what they are , I only was left a message to be there on Friday . I also have an appointment with my cardiologist weds. and thurs urologist. So please keep your fingers crossed. I just want a decent healthy life like others..even at 61 . Have a good evening and thank you for caring.

---------- Post added at 15:46 ---------- Previous post was at 15:41 ----------

Just to let you know... since my cardiologist changed my medicine , I no longer have the rocking heart but my pulse resting is now 86 to 93. Also the last ER visit a few days ago they did diagnose me as paraxoamal supervinticular tachacardia and they did see my heart out of rhythm on their ekg's .

I am sure none of this is spelled right but it was on the report that we got from the ER and I am trying my best to spell without looking at the actual wording as I don't have the report in front of me but think most will recognize whatever it is here.

MyNameIsTerry

09-06-16, 06:30

Thanks for your kind words, Michael.

Don't worry about spelling and all that, it's no biggie. Large professional forums even have rules about people raising such things due to the arguments it can start.

It's good they have got your pulse rate under control. That must be a relief as that has been really bothering you?

My GF said her mum's team are really good at explaining everything so they understand everything that us being done, when & why. Don't be afraid to ask questions, they will be happy to help you through it.

assortedjellies

13-06-16, 13:11

I'm glad your rocking heart pulse has stopped and I wish you a healthy future where all the tests and medications help you to combat your illness <3

mnaha

18-06-16, 20:42

Thank you both for your encouragement and concern and well wishes. I was suppose to have a pet scan but its been postponed until weds this week. I did however go to the oncologist which gave me a B12 shot. I have to have three more of these before I can begin treatment which hasn't been discussed exactly what that will be yet.

The shot gave me diarrhea and also fast heart beat. My heartbeat has been around 100 to 105 at rest where its normal to be between 62 and 79 . Also I have had bad stomach issues with diarrhea.

Also went to the urologist that took out my cathather and told me my prostate is very enlarged but he gave me a long term medicine for it but it takea a long time to heal. I am allergic to the other normal ones given for reduction of prostate.

I haven't been to the cardiologist but talked to him on the phone and he said I had a 40 percent blockage in a artery under the heart but he did not want to do anything about it just yet . He scheduled me another appointment for this coming week and said he wanted to see the PET scan as soon as it was done.

I think everyone is waiting for the PET scan to proceed with anything. My neck has been hurting where I was given a biopsy and I hope they did not spread the cancer from there by giving me the biopsy . I have heard lots of horror stories.

I am worried the cancer is gone all over my body from the location I mentioned in earlier post and maybe they have not detected it. I am having terrible bone pain like someone breaking my bones and I get it every morning and most of the day from the back of my skull down my spine in my shoulders and arms and in my hips and in my leg bones.. Its terrible pain. I have resorted to taking percocet as it was prescribed for pain in the bladder but works with this body pain so I know I shouldn't take it but Im in constant pain.

I am very scared as they have lots and lots of scans and nuclear medicince scans and stress test and xrays but nothing definitive other than I have head and neck cancer and a blockage in a artery under my heart. I am so scared..Please pray for me and thank you all again for everything.. I am so worried..not pessimistic but worried..

MyNameIsTerry

20-06-16, 06:59

It's good to hear from you, Michael. I think we would all be very worried in your situation. Anyone, let alone having anxiety to cope with on top of it all. Don't give yourself a hard time for that, we would all be panicking I bet.

They don't mess around with cancer, they will be all over you with tests to determine exactly what they need to address. They won't let anything slip through the net. Understanding any spread is a critical part of what they do everyday and they are very very good at it. All we can do is ask our questions so we understand and feel like we are keeping them on the ball but with cancer these teams really are the best in hospitals so they will be all over you to treat this.

My GF's mum is being treated for cancer and the standard of care has been excellent. That always seems to be the case whenever anyone talks about it but obviously my experience is much more limited than those more experienced about here.

Just tell them everything that is going on and let them make the decisions on what is anxiety and what needs further investigation. They have a lot of experience and know what to look for and they will rule out and not take chances because of this ongoing treatment. Try to accept what they say.

dally

20-06-16, 07:49

Manhna
In so sorry to read all you are going through right now. Tell all medical team All your concerns/symptoms the may/should be able to help you. Even if it is only that they reassure you.
This site is for everyone, inclusive. We all have good and bad days and can cope with what ife throws at us in varying amounts.

mnaha

22-06-16, 23:28

Thank you Daily for your kind words. Went to get the PET scan today and it took a couple of hours and won't have the results till tomorrow till I go to the oncologist . To date I have had 7 chest xrays 11 ct scans an MRI and now a PET scan. I also have an appointment with cardiologist on Monday .They had me wear a seven day monitor and he is suppose to have the results of that and also by that time I he will have the PET results.. Anyway that is where I am right now. Just to let you know for those who are wondering.. MRI isn't that bad.. just close your eyes and sleep. PET scan kind of like an MRI.. same thing close eyes and sleep. CT scans.. just relax and just close your eyes and well trying to think of anything else helpful. Funny all this time and still the PET scan will give everybody what they need to know about my whole body and every organ and function there is...Anyway that is where I am now.. So I will try to write again after oncologist tomorrow . Wish me luck they did not find a source and the cancer is just a thing on my neck. Also wish me luck that they did not find any other tumors of any kind and or bad arteries or whatever. Thank you all for everything and your kind words.

mnaha

29-06-16, 02:32

Pet scan results.... Cancer is contained for now. I have a choice ,surgery, chemo and radiation, or radiation . Complete PET scan of all organs, blood flow, oxygen levels, organs and etc.. Nothing found but cyst on right kidney , still there and benign after five years, cyst on the adrenal gland been benign been there for five years. Something minor in the lungs from being somewhere in the east drinking the water.. who knows on that one.

Also crystallization on the spleen from samething.. Cardiac study nothing remarkable or significant. No blockages , not aneurysms no nothing. They looked long and hard to find anything and everything and found nothing. They could not find a source for the neck cancer. They were baffled..so for now I have to decide on my options for the neck cancer. I am pretty sure my option is going to be leave it alone and go on with my life. After all the scans and the things I have been through , I think overall I am healthy and they are just looking for another paycheck. The only thing I regret is letting them do a biopsy . If that has been there such a long time and there is no source for it, it would have just been there the rest of my life with no issues but since the biopsy they may have really screwed me up. I guess we will see. As for the cardiologist I think I am going to find one that I can talk to and communicate with. I don't believe the one I have is competent.

But anyway for now I guess I will see what happens and what the next steps will be other than living my life and hoping to forget these nighmare doctor visits. Hopefully.. Anyway this was just for anyone that might want to know what happened and what the final thoughts are on everything.

Fishmanpa

29-06-16, 12:53

Head and Neck Squamous Cell Carcinoma, which you said was your diagnosis, cannot be "contained". If they cannot find the primary site, then it's an "unknown primary" which accounts for only 1-2% of ALL head and neck cancers (I know, I had an unknown primary). If indeed they found SCC in a lymph node, it means that the cancer is metastatic and spreading. Also, as in the majority of cases, by the time it's detected in a node, it's well into advanced stages. SCC is deadly. Left untreated you will not have long in this world so your probable choice to leave it be and live your life is truly confusing as it's essentially resigning yourself to death.

I find it baffling that you would not have already been in surgery or at the least scheduled. In my case, the PET showed the cancer in my neck. I had my palatine tonsils removed and several tongue and throat biopsies done in an attempt to find the primary within a week or so of my diagnosis. A little over a month later after a 2nd opinion at Johns Hopkins, I had the cancer removed surgically, my lingual tonsils removed and more biopsies looking for the primary. That was followed by 6 weeks of chemo/radiation. You don't mess around with cancer, especially H&N SCC. You throw the entire arsenal at it.

What was the actual diagnosis classification? I'm sure your oncologist would have shared that information. What about the nodules in your lungs? What did the PET show there?

It's an absolute miracle that the 40% blockages previously reported in your heart have totally resolved!

Regardless of my confusion concerning your posts, I'm pleased you are well.

Good luck and as always

Positive thoughts

Mercime

29-06-16, 22:53

mnaha

29-06-16, 23:07

It is classified as an unknown primary. I had an appointment yesterday with a surgeon /ent he did a scope and looked and looked and looked although they have done head and neck MRI's ct scans and nuclear medicine scans of the neck head and throat they cannot find a trace of anything. My oncologist never gave me a diagnosis other than that I had three choices already mentioned before in my last post ..It is SCC and they have looked and looked and looked for primary and have had internal scopes and everything you can think of and cannot find a source period. The surgeon recommend surgery but with no guarantee the doctor recommended chemo and radiation with no guarantee or radiation no guarantee but did tell me for the moment it was contained. I don't know why ,maybe you could email him yourself and ask. He is one of the most foremost authorities on cancer in Tucson. His name is Guillermo Gonzalez-Osete, MD.

He sent me right to the ENT and the ent did all kinds of exams and scopes and scans etc and found nothing. They said the nodules in the lungs were benign and they were nothing at all other than things that form in people's lungs from being exposed to caves and underground places . Nothing that would interfere or cause any kind of issue with breathing or the lungs.. I forgot what he called it but he gave me the PET report and the MRI report and other records .Perhaps I can look it up for you . They found nothing absolutely nothing wrong with my lungs.

They also concentrated on everything artery and cardiac related and there was nothing absolutely nothing. I think I need to switch cardiologist because I have had two doctors already tell me they had looked at the same results as the cardiologist and seen nothing..so that is in the works.. Anyway for any other classification you can write my oncologist so maybe he can give you an detailed description of diagnosis but as far as I am concerned .. that is all I know other than I am suppose to see him again in five days..

As I said I have pretty much made up my mind ... no surgery ,no chemo or radation.. perhaps radation but I am no way going to get my throat cut open and if nothing else spread what is there already if there is anything there. Call me stupid...its ok but I would rather live what is left of my life without worrying what will happen tomorrow.

For all we know we could all be vaporized by a meteor tonight or tomorrow and then what would any of it matter.. Anyway thanks for the remarks as to glad I was feeling better but if you have any other questions write to my doctor and I can also give you the name of my other attending doctors including ER doctors and also PCP's.. thanks

MyNameIsTerry

29-06-16, 23:11

Mercime,

I don't think any of us can say we know how it all works, we are not medical professionals specialising in these areas. Even then, delays in treatment do take place. Whilst I can't comment on this specific case, I can on a case you are not aware of and it did take longer than I expected. I was surprised to read that delays of weeks are not necessarily as important as people think, I would have thought it the other way.

So, I'm simply not going to believe any member, an anonymous person, claiming they know how it all works. People's experiences do differ. I know people who have also had very fast treatment, but because I've seen one that took longer I'm not going to disregard their experience and remain open minded to delays.

I'm just saying that about the time issue though.

mnaha

29-06-16, 23:25

No, this can't happen. 40% blockages in cardiac arteries don't disappear in under a week, cancers don't lie there while the sufferer refuses treatment, then gently and slowly departs this mortal coil. We may well be individuals, but for those of us who have been there, we know the routine.

Cancer is found, your feet don't touch the ground. Scans are done, the tumour is sized, the plan of action is put together very quickly, treatment is commenced. We know the procedures, we know the treatment regimes. We know what happens when there is spread into the lymph nodes, in the case of advanced cancer. The above posts are not what happens, and I genuinely cannot understand why anyone would say that they are, unless they are looking to elicit sympathy. I have empathy, but not with those who deliberately deceive others. It is wrong and unfair.

I would suggest that Michael should focus on his health anxiety, as it is obviously extreme. It would be time well spent to enlist specialist help in that area.

Yes I have health anxiety ,,,,,,DUH.. but the fact I am reporting only what has been told me and what is going on. I can supply a full list of my doctors the hospitals and even some of the technicians and all the doctors.. As far as I am concerned I am going with the program for each and every ailment that I have at the rate recommended and have no idea why a cardiologist would tell me one thing and two other doctors something else. Geez.. How many times have I read the same thing happening in the UK.. it happens all the time..different doctors different thoughts and different diagnosis. I am just glad I didn't let the two other idiot doctors that told me I had renal call carcinoma take my kidney and adrenal gland five years ago.. People have to think before they give permission for stupid decisions. Also I did not know you all were foremost authorities on medical things and diagnosis here. I am sure glad we have so many specialist and doctors here that are qualified to say what is what.. sure builds a lot of confidence in their false hope that everything that happens is anxiety.

Mercime

29-06-16, 23:40

Fishmanpa

29-06-16, 23:53

It is classified as an unknown primary.

Just the fact that you cannot provide an official diagnostic classification affirms my thoughts. And now, ironically (highly ironic), you have the same diagnosis that I had? Not only Head and Neck SCC but an unknown primary which affects only 1-2% of ALL SCC Head and Neck cancers? I know others personally who I met while in treatment and more on the Head and Neck cancer forum I was part of that all went through the same thing. So yeah, I know. And I also know, no ONC worth his salt would let you walk out without laying it out there and based on what you say you've been diagnosed with, you would have been told it's a death sentence left untreated.

Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts. I watched as the nodes in my neck grew from a grape to looking like I had the mumps in a few months. By the time I went in for surgery, I was feeling unwell and in constant discomfort from the tumors pressing on structures on my neck. Not only that, if the cancer starts traveling the lymph highway, SCC will take hold elsewhere in your body. If you had a biopsy and were diagnosed with SCC, then you sure as hell better treat it!

But you're right Michael. You'll live a long and healthy life and the miraculous reversal of a 40% blockage in your heart bodes well for many, many more years.

Positive thoughts

MyNameIsTerry

30-06-16, 00:10

Talk to your doctors, Michael, they are the ONLY ones who understand fully in terms of diagnosis, treatment, etc and follow their recommendations. Non treatment of cancer is a one way ticket and your family would prefer you were around for years to come.

mnaha

30-06-16, 08:23

With all the major misdiagnoses you have had, you could make a fortune. Litigation sounds the way to go.
By the way, I don't claim to be a foremost authority on anything. But I know enough about it to know that what you have said doesn't add up. That's fact.

I really could care less about what you think adds up or doesn't . This is an A and B conversation C your way out.! Jack

---------- Post added at 00:16 ---------- Previous post was at 00:12 ----------

Just the fact that you cannot provide an official diagnostic classification affirms my thoughts. And now, ironically (highly ironic), you have the same diagnosis that I had? Not only Head and Neck SCC but an unknown primary which affects only 1-2% of ALL SCC Head and Neck cancers? I know others personally who I met while in treatment and more on the Head and Neck cancer forum I was part of that all went through the same thing. So yeah, I know. And I also know, no ONC worth his salt would let you walk out without laying it out there and based on what you say you've been diagnosed with, you would have been told it's a death sentence left untreated.

Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts. I watched as the nodes in my neck grew from a grape to looking like I had the mumps in a few months. By the time I went in for surgery, I was feeling unwell and in constant discomfort from the tumors pressing on structures on my neck. Not only that, if the cancer starts traveling the lymph highway, SCC will take hold elsewhere in your body. If you had a biopsy and were diagnosed with SCC, then you sure as hell better treat it!

But you're right Michael. You'll live a long and healthy life and the miraculous reversal of a 40% blockage in your heart bodes well for many, many more years.

Positive thoughts

Maybe radiation maybe not. I will decide and if meant to die so be it. I am tired of doctors ,hospitals and anxiety. I am sick of all of it and so ready to say goodbye to it. I am sorry you were so ill and maybe I shall follow the same route but to the grave but not trembling in a closet or corner being terrified and stupid enough to keep coming on here and getting brow beat every time I report anything that I know. You keep your advisory status here and in about a year if I am still around I will come back and report ...or not..

---------- Post added at 00:23 ---------- Previous post was at 00:16 ----------

Talk to your doctors, Michael, they are the ONLY ones who understand fully in terms of diagnosis, treatment, etc and follow their recommendations. Non treatment of cancer is a one way ticket and your family would prefer you were around for years to come.

I know Terry or so they say but think they would be better off if I wasn't around. I am a pain in the butt and well, my time on this earth has been far better to me than I planned or could have even hoped for. Yeah I might be missed a little but not that much and as far as I am concerned 61 years of anxiety and misery about being ill is too long. I am tired so very tired and just don't want to bother anymore.

At this point I am just not sure I want to see another doctor or ER or hospital or anything medical related. I was sure I would get rebuffs here for anything and everything I have said and frankly I don't care. I am sick of all of it and those people that try to make me out to be a liar. I hope they get theirs...

You are the only descent person on here and if they loose you they lost everything. I won't be back. I assure you that. I am fed up with the bull crap and the idiots that keep saying im lying.. To hell with them and anxiety and medical crap. Im done. You take care and continue to be the fine human being you are and take care of yourself. I ask them to delete all my post under this screen name and my other one and they won't do it and I don't want to do it myself ,its too time consuming and just boring. Take care my friend and thanks for being my only friend here.

MyNameIsTerry

30-06-16, 08:55

Michael,

I appreciate your kind words, thank you.

As I've said before, this forum is for everyone so we all have equal rights to being here. If you change your mind and wish to stay, you are welcome. We don't all get on around here, I know people who dislike me and I've thought of leaving a few times but decided I shall go when I want to and not because of disputes with others. That's just forum life but it is amplified on here with our conditions. There are loads of great people on here, don't feel that disputes with a small number are representative of the forum. I've had many arguments and the amount of new members coming through largely washes old issues away.

If you do choose to go then I wish you all the best with your health in general. I do hope you choose the right solution to get treatment for all of this because your family obviously need you or else they wouldn't still be with you. They wouldn't be at the hospital with you if they didn't care and they obviously wanted you to move closer.

I know going so many years with anxiety is soul destroying, others say the same on here. It's a fear of my own too. Depression can all so easily set in the more we think about what we are losing or not getting, I get this too and try my best to keep it out of my thoughts but it's not possible all the time.

Take care and all the best.