Specialist Update Update on Looking4answers

[looking4answers]

Went to the specialist today. Of course no suprizes. Inpm either flawless at research or im physic.... The Spcailist says I have cancer in my right kidney. He says that is tne least of my worries. He says its not big enough to worry about at the moment. As for the adrenal gland well thats the emergency. The mass is bigger than I thought. They showed me my adrenal glan that is suppose to look like someones nose and it looks like a big mushroom. They are scheduling me for an MRI as soon as possible to see. the best plan of attack to remove if he even can. That is one reason to do MRI . Some cannot be removed and have to be treated with meds. This gives you about a five year aurvival rate. Then if they do remove,if they touch one wrong thing it can kill you. There is a 50 percent survival rate on the op table. This tumor is only present in on in a million people. Talk about rare. Anyway they are trying to keep me stable at tne moment with meds and I got to see all my ct scans of my insides and had to wait two hours to be told what I already expected. I went to the cemetery again today to look at my grave site and then came home. If they do the surgery it will be in a medical center 100 miles away with a team of specialist. Anyway this is my update.

[JaneC]

Really sorry to hear this Michael. Don't know what else to say except try to focus on the positives - they may be able to remove the tumour rather than they may not etc. It sounds as if you will be in the very best of hands if you do have the op. And there are loads of people on NMP rooting for you.

Thinking of you and your wife, this can still work out OK :hugs:

[Anxious_gal]

oh :(
So you have two cancer tumors?
The adrenal gland one is going to be removed as soon as possible but thats only IF they can remove it ? :(
I'm so sorry of the outcome, I was really hoping it wouldn't be cancer.
I don't know what to say to really, just I'm so sorry you have to go through this :hugs:
Thank you for keeping us all updated x

[KK77]

I just saw your post and I had to offer my best wishes Michael. I hope the operation if necessary goes smoothly and is a success.

Thinking of you.

[looking4answers]

Thanks everyone so much....ill try to let you know when everything is going to happen and I dearly appreciate your kindness and support.

[Anxious_gal]

I know you aren't feeling the best but maybe treat your self to something nice :hugs:
It very hard to tell the outcome of cancer, My lil cousin has Lukemia, not sure which type but it's in remission at the moment, she's only young but she has been through an insane amount of surgeries, had complications such as her brain swelling up, had to get numerous blood transfusions I saw her go through the whole process.
BUT she is doing ok now despite everything.The cancer is in remission.
But when it comes down to it and this goes for every all you can do is enjoy life as much as you can and take pleasure in the little things.
I am not you so I can't even begin to imagine how stressed out and scared you are, it must feel so dreadfully lonely in a way.
I hope the MRI and surgery if you have it goes well.
I think you are being brave considering you fear of doctors x

[looking4answers]

You are right about the little things being the most precious. A breeze cooling you. The smell of newly cut grass,a flower that just bloomed,a beautiful blue sky. The sites and sounds of nature and the birds and the the trees etc. I had a dream one time a very lont time ago that I dided. Believe it or not ,I missed the blue sky,the green grass and the wind most of all. Shows you what is really important when it comes down to it. Thanks agaim Mishel,really there isnt much to say. I think my terror is beyond me now and acceptance has set in.:hugs:

[lucy devine]

I know me apologising for your bad news won't help the situation at all, but I would just like to say that I will be thinking about you and you will be in my prayers. Cancer is a hugely debalitating illness but a positive attitude (very hard I would imagine) and a sense of acceptance and peace of your situation can go far in aiding your recovery and improving your quality of life.
I wish you the very best, stay strong and stay fighting
xxxxxx

[daybyday]

Thinking of you.

[looking4answers]

Thank you for your kindness but as a tidbit of info to all that are here on NMP ,please please please read up on adrenal masses and cancer. So many times people are sent away from the ER with what I have. I cannot stree enough to ask your dr to check adrenal function enough. This is all I truly ask of you because so many of my symptoms were classic adrenal symptoms and the specialist told me today ,that every panic attack and bout of anxiety was caused by the mass that has been on my adrenal gland for many years secreting adrenaline in my body. He said I would bet my medical reutation on it.

Sent from my iPad

[ElizabethJane]

Dear Michael I'm sorry that you have this diagnosis. Sending my support. I know nothing about adrenal cancer. My Dad had renal cancer (mass on the one remaining kidney, Sending hugs to you and your family. EJ

[looking4answers]

Im so sorry ,about your dads mass..... the doctor hasnt even given me the time to think about the cancer in the one kidney. The adrenal thing has fot me blown away. Good luck to him and you and God bless you.

[Ddcoo]

So very sorry Michael to hear your news, If caring cured people then you would be cured by all of us here, but I can pray for you and will do so.

[Anxious_gal]

Hey I made a post after reading you advice on getting the adrenal glands checked out, I found some tests you can do at home yourself, I made a post about it.

http://www.nomorepanic.co.uk/showthread.php?p=880071#post880071

[Geoff2301]

Thank you for your kindness but as a tidbit of info to all that are here on NMP ,please please please read up on adrenal masses and cancer. So many times people are sent away from the ER with what I have. I cannot stree enough to ask your dr to check adrenal function enough. This is all I truly ask of you because so many of my symptoms were classic adrenal symptoms and the specialist told me today ,that every panic attack and bout of anxiety was caused by the mass that has been on my adrenal gland for many years secreting adrenaline in my body. He said I would bet my medical reutation on it.

Sent from my iPad
Sorry to hear of all your problems Michael....... as you say, these cancers are VERY rare so I'm not I'm not sure it was a good idea to suggest that people suffering from anxiety/panic attacks should ask for adrenal function tests to rule this cancer out..... its going to give health anxiety sufferers another thing to worry about!

[lucy devine]

i agree geoff! i've just started googling about adrenal cancer now :/ :/ xx

[nomorepanic]

Hi Michael

You have been in my thoughts and I am sorry the news was not as positive as we all hoped and expected.

Please accept a big hug from me and loads of love for the tests and operations ahead.

I have a lesion on my adrenal gland but they were unable to scan it again as I could not tolerate the MRI scanner. They said I would know if it was getting worse cos I would be feeling ill by now but who knows eh?

[Janvi]

U be brave. Be positive. God will help you out.

[kinnygirl1]

Sending you best wishes for a positive outcome. All here at NMP will be rooting for you. x

[Liliana83]

Sending you lots of hugs & good vibes!

[looking4answers]

Thank you all so very much. The MR I is scheduked Monday morning at 615 am. Never had one of these so should be interesting. I wasnt trying to scare peoole or even make them panic and I did see the self test but this I think is for lack of adrenal function. Mine is called Pheochromocytoma its over secretion of all adrential hormones and chemicals that can send you into life threatening hypertensive crisis which can kill you. 50 percent of all adrenal masses are found on autopsies from people dying from something they did not even know they had. I want to thank each and everyone of you for your loving kindness and just wanted to make you aware of what to look up on the pheo ,its almost exactly like anxiety panic . Anyway God bless you all for caring . And Geoff! Just shut up,nobodies cares about your opinion,sorry but you can be a real a--s .

[Mark801]

Like me!!!!!!!!!

I'm really sorry about your news Michael and I hope that everything turns out well for you.

This might sound really obnoxious of me but can you tell me what symptoms you were experiencing. I'm always panicky and I CONSTANTLY OVER-BREATHE which causes an array of symptoms but reading your story only has me terrified of adrenal cancer.

I'm only 21 btw and I really want to google right now but I'm scared to.

[looking4answers]

Here is a partial list,now bear in mind adrenal mass is not the same as adrenal malignancy which is even more rare but adrenal masses even benign cause problems. I had all these symptoms :
The most prominent symptom of a pheochromocytoma is high blood pressure, which may be very severe. In about 50 percent of the people, the high blood pressure is persistent. In the rest, the high blood pressure and other symptoms come and go, sometimes triggered by pressure on the tumor, massage, medication (especially anesthesia and beta-blocking drugs), emotional trauma, and on rare occasions the simple act of urination. Other symptoms include any or all of the following: a fast and pounding heart rate, excessive sweating, light-headedness when standing, rapid breathing, flushing, cold and clammy skin, severe headaches, chest and stomach pain, nausea, vomiting, visual disturbances, tingling fingers, constipation, and an odd sense of impending doom. When these symptoms appear suddenly and forcefully, they can feel like a panic attack.

[Anxious_gal]

Just wondering which tests picked up on your issue, what made the doctors go oh something is wrong here.
Was it the high blood pressure?

Wishing you luck for your MRI, I will be thinking of you :)

[countrygirl]

So sorry for your news and I hope if they do operate all goes well.

I have been tested for what you have last year by my on the ball Dr and thankfully it was negative. MY Dr has only seen one case in his career and that person was successfully operated on and is alive and well to this day.

[looking4answers]

The blood pressure and also a reaction to a new medicine that caused my heart bret to goto 140 and stablize at 112 for hours and also 175/115 blood pressure. I was already scheduled for a chest xray so they said hey stay a few days and leot us keep an eye on you. I did and they made chest xrays and one slipped and they made another but the one that slipped they saw a shawdow on the kidney so they started doing all kinds of ct scans starting head to toeo,heart,arteries,nerves,skelatel you name it then the ultra sounds etc....then the blood test twice a dayand urine test and finally 24 hour urine which 8 viles of blood and 24 hour urine seems to be the key.

[looking4answers]

Yes countrygirl what I have is found one in one million population,too bad it wasnt the lottery. Thanks for the best wishes

[Ambers]

Wishing you all the luck and success in your path to beating this horrible illness - be positive (I know that will be hard) and brave, recovery is now your goal and we on NMP will be there for you x

[bronte]

so sorry to hear your news and i send my love and all the luck in the world to help you overcome your illness x

[looking4answers]

God bless you all for your caring. It means so very much to me signing on a d seeing people that care. It seems when something like this is happening ,you feel all alone but I thank God for all of you !

[Anxious_gal]

I'm pretty sure it's Sunday, so wising you luck again for your MRI scan on Monday I think it is.
:hugs:

[looking4answers]

Thanks Mishel, its still saturday night here. You guys are ahead of us by seven plus hours so I still have a little time thank goodness

[suzy-sue]

Im sorry to hear your latest news Michael .I came home yesterday from my holiday and was told by text by a friend .I can undersand how daunting this all is at the moment .But I know of a woman who has had this ..She is now healthy and well .Please try to stay positive .These conditions /illnesses are complex but can very often be treated sucessfully with surgery and drugs ..Things will be clearer once the MRI is studied .Wishing you all the best of luck for Monday .May you find inner strength to cope with the next steps to beat this .Sending you and your wife love and positive vibes .Like the saying goes "Its not over till the fat lady sings "..Just for the record ..Ive gagged her .She aint gonna be singing if I get my way ..Take care my friend Thinking of you .Lots of luv Sue xx:hugs:

[RosieXXX]

All good wishes to you Michael, and I hope all goes well for you tomorrow :hugs:

[looking4answers]

Sue you made me laugh and thats a good thing....Im a little nervous today about the MRI tomorrow. I didnt think I would be but I am also my kidney adrenal area is hurting a little and its never done that before. But thank you and the other people for trying to cheer me up....iys very kind of you all.

[Em.ma]

must be so hard. wish you well xxx emma

[JaneC]

Also wishing you luck for your scan Michael, keep your chin up xx

[Anxious_gal]

Thinking of you :hugs:

[looking4answers]

Did not do an MRI today. I had a difference of opinion with the specialist. This thing I have can be treated with meds not surgery if there are three different reasons that do not apply. One being size of mas,mine is suppose to be very small, suspicion of cancer,to my knwledge the mass has not been deemed as though of as anything other than benign ,third,really really high levels of two different chemicals which mine were only skightly elevated. I think I can be treated by meds from an endocrokogist so I requested my doctor to refer me as soon as possible. I easnt scared of MRI,its just this specialist was pushing me and I dont feel confident with his cosultation so im awaiting word from my main dr.

[M155anthr0p3]

I only just saw your post so apologies.

So sorry to hear your news, you've been a great help to me in the past.
I know you are strong & you can fight this!!!!

Thinking of you & wishing you well.

Emily xxx

xxx

[Anxious_gal]

I'm not sure if this is good news or bad news :unsure:
Sorry you have to deal with such useless doctors :hugs:

[macc noodle]

I'm not sure if this is good news or bad news :unsure:
Sorry you have to deal with such useless doctors :hugs:

I think Mishel if you look at his post it appears to be good news

(1) very small mass
(2) benign
(3) minimal elevation of levels found

Here's hoping for Looking 4 Answers to have a positive outcome :yesyes:

[M155anthr0p3]

I think Mishel if you look at his post it appears to be good news

(1) very small mass
(2) benign
(3) minimal elevation of levels found

Here's hoping for Looking 4 Answers to have a positive outcome :yesyes:

I'm keeping fingers & toes crossed

[Dibbler]

Just come across this thread Michael and I am so sorry for what you are going through at the moment. I know from previously exchanging posts with you that your wife and daughter have both had their health issues in the past and got through them with you support. I'm know that you too will do the same with their love and support.
Please keep us updated with how things go and I know tha tthis will be almost impossible for you to do but please try and not worry too much. From reading the three summary points above everything looks very very optimistic.

[looking4answers]

Thanks to everyone that posted.I spoke to my regular dr today and he said I made the right descion after speaking with the specialist.He is setting me up with an endocrologist to see about checking other things and re doing test for hormones and secretions and as I suspected he said you cant just go cutting out an adrenal gland because sometimes you cause more problems than you take care of and it becomes a very bad thing.He is going to make some calls and perhaps set me up with someone in mayo clinic or oshners to do a study on this.But he did remind me that we have to start thinking about the cancer in the kidney to as if it spreads there will be nothing they can do.He made me feel more confident and secure about things. Keep me in your prayers and God bless each and everyone of you. Michael

[skyisblue]

Hi Michael,

I haven't gone through the whole topic, but I want to first thank you for all the pieces of advice you've given me in this forum. We may not personally know each other and I may be rather new here, but I want you to know that you are in my prayers.

We support you all the way. I admire you for having enormous strength to go thru all this. The best way now would be to stay positive and embrace the medical technology that will cure you.

God bless!

[M155anthr0p3]

Glad you are feeling more confident...that's good to hear.
You can do this x

[suzy-sue]

Sounds like the best way to go Michael ..Wishing you strength and positivity to help you through this ....You can and will beat this ..Thinking of you .Luv Sue xx:hugs:

[Magic]

Hello Michael,
Have been reading your posts. I just wanted to say stay positive:hugs:and
all the best for your future treatment.

[Seffie]

Hello Michael,
just came across your post. Ever since I have been using NMP you have been on here supporting others. Just wanted to say that I hope all goes well & just take one day at a time, that's the only way to live no matter whats going on in your life.
Thinking of you & sending you good wishes & healing.
All the very best :yesyes:.
Seffie x

[Anxious_gal]

Thanks for keeping us updated, I hope you are feeling a bit better better.

[simi]

Your very brave Michael you will get through this take care you are in my prayers x

[mandie]

Hi Michael.

Not been on for a while, so only just seen your posts.

Sorry to hear what you are going through, wishing you all the best with your treatment

love mandie :hugs:

[relika]

I came across your post today and read about what you are going through.

:hugs:
I'm sending you hugs, and pray that you will get through this and be healthy again, and find the strength to stay positive. I remember a quote I saw in the oncology department when I went with my mom when she got chemotherapy. "Staying positive is half of the healing process"

Take care, you are a strong person.

[looking4answers]

Still waiting on endocrogist and still worried although have done alot of reading about the thing in my adrenal gland and also kidney. I cant seem to concentrate on much else. My wife reads constantly and stays on the computer so she doesnt have to think about it or talk about it which makes me lonley but guess thats life , you are born alone and die alone so guess thats what makes life life , Oh well guess thats all to say for now just waiting ... waiting

[Anxious_gal]

I hate how they are keeping you waiting :( that's the most frustrating part I think.
I think your wife just is doing what makes her feel better, everyone has their own way of coping.
It's true they are times when you realise just alone you really are, no one can feel your pain or hurt.
That why meeting people in the same situation can really help to have someone to relate to.

[looking4answers]

Yeah, I have been reading online people with the same issues but just reading is all I feel I can do. I have been researching so much about this illness , i go from sadness to frieghtened to anger to disbelief in just minutes but then guess life deals us our hands. Its weird that it nly happens to one in a million people. I was haveing a pheocromacytoma crisis is the ER for hours and they didnt have a clue. I had all the symptoms in front of them for hours and even during the first couple of days they thought it was anxiety ubtil they stumbled on the tumor ,but I read accounts of this happening again and again all over the world. Thank God my heart and blood vessels were in good shape or I would have died that night.

[Anxious_gal]

I hope everything is going ok and you are getting the treatment you need x

[dizzydaisy]

Hi Michael I hope you are ok, I have only just read this post. I was diagnosed with cushings a few years back. At first they thought it was a problem with my adrenal glands but the mass turned out to be on my pituitary gland. it is controlled with drugs. My endocrinologist, Mr Samson is wonderful. I really hope all goes as well for you,xx

[looking4answers]

Still waiting to see an endro. I hope they can do something like that for me ,then the only thing I have to worry about is the cancer in the kidney :(

[Anxious_gal]

Ugh I'm so not happy they are making you wait so long :( Waiting is like the worst part.
I hope you are not feeling ill and you are getting on ok wit your medication.

[gaaron]

Hi Michael, I haven't been on for quite a while, but noticed your thread when I was 'browsing'. You & your wife are in my thoughts & all the best xxx:hugs:

[looking4answers]

Went to my regular dr today blood pressure 126/73 pulse 104 but settled down when relaxing there. Ask the dr about possible poor circulation in my legs or pherifical artery disease and he said no , i had great pulse in my legs and did not fail the push test where you push in and the skin stays in , says things seem good, also got me set with an endocrolist tommorow that is suppose to be the best in this part of the state also is some kind of super specialist with what I have. The dr was super positive today and very supportive but did give me a reminder not to forget the kidney again but did say we will treat one at a time. I dont know why but he made me feel so good about things I shook his hand and hugged him and told him I was glad he was my doctor and glad he was in my life. He was shocked and surprized but I just wanted him to know what a difference he had made in my life and of my fears of drs. He is a great person and dr that makes me feel listened to and is very supportive. Now just wish me luck at the endocrologist tomorrow:))))

[suzy-sue]

Good Luck Michael ..I will be thinking of you tomorrow .That was a very nice thing to say to your Dr .He seems kind and understanding .At least this awful time has removed your fear of Drs . Love to you and your wife .Sue xx:hugs:

[Anxious_gal]

Awww your post brought tears to my eyes, I LOVED the soppy part where you hugged your doctor :)
Glad you are feeling more positive :hugs:
I hope tomorrow goes well for you x

[looking4answers]

Thank both of you....as youknow im an emotional type guy and shaking his hand and hugging him felt appropiate plus he has given me a new sense of being more positive. I still have ligering positive thoughts from my visit there ,just hope I can keep them through the night. New drs always seem to unnerve me but I find my valium does alot to make make me unaware of that lol.....got to love those drugs lol ... and im the one that hates to take an aspirin if I have to lol ....Thanks for commenting and thanks for the good wishes

[bronte]

so glad your dr made you feel happier keep them thoughts and all the best x

[Anxious_gal]

Hope you are doing ok : )
Ha ya sedatives do calm me down too.

[mandie]

Iv been thinking about how you have been

let us no

mandie x

[looking4answers]

H,sorry to have not posted but its been slow going. I went to the endocrologist and she took over an hour with me checking my levels and giving me a checkup and she said the samething the dr had said. The levels dont match with a functioning mass also my testostorone was very very good which is a good ndication that I dont have adrenal cancer although both masses are somehow connected together ,its was my assumption she is making a guess they are both just benign cyst that have been there a long time. She seems to be very good at what she does but she had not seen the ct scans which she said she would download and take home with her that night also she set me up for a 24 hour urine from the hospital and also another blood work up , another eight viles of blood the day I take the urine test back then Ill wait again. In someways im feeling a little more positive in other ways I feel depressed but im here and playing the waiting game. Ill turn the urine test in om monday and get the blood work then let her check out all the results and get back to me. Thanks everybody for being concerned as soon as I knowanything ill let you know. Thanks again for everything

[Em.ma]

I hope your doing ok.
I dont know much about cancer but its sounding pretty positive from what ive read from you
:)
I really hope you are able to stay strong :)
Emma x :)

[Anxious_gal]

Yay you replied x I was starting to get a little nervous :hugs:
So sounds like good news so far!
I hope the hospital staff are treating well, a nice friendly nurse can make such a big difference to your overall mood.

[eva82]

Hi Michael,
I've been following your story on here and I just wanted to take some time to send positive vibes your way. I know that waiting for an official diagnosis can be very hard, but you are being so strong and brave so keep up the good work! I wish you the best and will keep you in my thoughts and prayers. Keep us posted..take care! Xx
-Eva

[LittleMissPanicky]

I too have been following your story on here and just wanted to send big hugs your way , and to say it is inspiring to hear that you are sounding quite positive xxxxxxxx

[looking4answers]

Hi everybody,finished the 24 hour urine today and got nervous about taking the blood test, I dont know why but I was. We went to the lab at the hospital turned in the urine test and then had a tech draw the 8 viles of. blood. Funny ,never felt the needle,laughed and talked the whole time . Really wasnt a bad experience t all over very quickly ,got up walked out and cruised around the hospital and then came home and ate lunch. im finding the more exercise I do helps keep the side effects away,not sure why but doing very good not experiencing much side effects now. Im doing more and eating mote UGH lol but seem to be feeling better. Went for a bike ride the other night for a hour or so ,so it seems things are better, but now I wait for the endocrologist to decode the ct scans ,read the rine and blood work and then get in touch with her determination ,so im playing the waiting game again. Thanks to everyone following whats happening with me and also thinking about me and saying hello. It mkes me feel great to be cared aboutso much. Thanks to each and everyone and as soon as I hear something ill post again.

[Anxious_gal]

Glad the 24 hour urine test went ok, I often get nervous about blood tests because I worry it'll make me dizzy lol
Glad your managing to eat and well done for exerciseing as that can so hard when you aren't feeling the best :)
Haha I am not even sure I remember how ride bike:)
Yes waiting sucks, I hope they get back to you soon with good news x

[looking4answers]

Yeah just got the 24 hour urine done and brought in. Therefore the dr had me scheduled for the eight vile blood test. Luckly when I got there didnt have to wait long and the tech and my wife were jibbering about somethng silly so I joined in and she was finished taking my blood before I felt the needle in my arm. Thats the weirdest thing I can never feel the needle injected anywhere ,maybe a neuro prob who inows but m not. complaining lol."but anyway now worried about what the teast will all say this much later.

[looking4answers]

Still waiting tohear from endocrologist. For the last few days I have had something like acid reflex. Yesterday I took a bunch of tums which later I found out was a no no with my meds. I got. gas real bad after eating and went to have a bowel movement and felt a ball of something come up from my stomach to my heart and my heart starting beating realyreally fast and wouldnt slow down. I took a half of a beta blocker and it didnt seem to have an effect then my heart started skipping or feeling like skipping really bad and then it acted like it was going t stop. It did this for 45 minutes or so and then all of a sudden went to a perfect beat around 65. . Im not sure all of this was gas/ panic induced but there are warnings on my beta block that sys it can give you cardiac failure if you dont have heart problems and also heart block and among other really bad side effects. On top of that the phrmacist would not fill the beta blocker until thy talked to my doctor because they said the med did not interact with my other meds. They finally talked and the druggist filled the perscription so guess all is well but that episode I had last night has thrown a panic in me and im afraid it will happen again,so I dont know wht to think and dont want to rush to the hospital again so im sort of nervous here again whioe waiting to here about my results

[Anxious_gal]

I hope you tell the doctor what happened, you know your body best though.
I wonder how fast your heart was beating? Mine can go up to 180 but I do get chest pain with that.....

[looking4answers]

Well Mishel, I have mentioned a simular inncodent or two that happened to me after trying to stop my mid day dose of metropolol and he had told me to stop that dose. This is four times simular events have happened when I didnt take that dose ,so his solution was well you arent taking that much ,go ahead and take the dose at mid day if it makes you feel better. Hmmmmm im learning at the moment why people abuse drugs. When I take valium ,my worries go out the door and when I take more valium,Im in never never land and dont really care what happens where. I am so tempted to just start taking more valium as Its just a really great feeling not to care.... but I wont but I get so scared sometimes im tempted.

[Anxious_gal]

Huh I hate hate hate taking sedatives...... but I kinda like the sleepy I don't care feeling lol
I guess I am too much of a control freak :)
They are addictive though but sure what can they do, you kinda need them after all you have been though :)
I would be careful though, as you may build up a tolerance to them and end up needing a much higher dose.

[looking4answers]

No Mishel I was only kidding a little but sometimes everybody feels that way sometimes

[Sammy J]

Hi,

I've not been on here for a while now and have only just read this thread. Firstly, best of luck with your treatment and thanks for keeping the folks on here updated with your progress :)

I just want to tell you about a friend of mine who was diagnosed with rare kidney cancer which had spread to his adrenal gland and then lungs. The tumour encased his kidney completely so that was removed, as was the affected adrenal gland. He was given a 50/50 chance of survival from the op but came through okay (and he's a VERY unhealthy person..smokes 40 cigarettes a day, drinks, real bad diet).

During the follow up scans it showed the small patches on his lungs had all but gone, they were 'feeding' from the large main tumour apparantly? Ok, since the main op he has had another op on his remaining kidney as the cancer returned there so they removed a section of that but other than that he's been okay since. That was 9 years ago. He was told the cancer was genetic and very rare.

I just wanted you to know his story and that the outlook can be much better than first thought. By the way he is 48 years old.

Sending best wishes to you

Sam :)

[looking4answers]

Thank you for your post ,its very kind of you to share something positive. Michael

---------- Post added 23-10-11 at 00:13 ---------- Previous post was 22-10-11 at 23:53 ----------

I wrote a very long post to start with and my precious ipad was gracious enough to do away with it. I started to just stop with the one line I wrote but decoided to try to write the completed post again. I have been pretty upset today . I woke up this morning with a very strange sad ,scared feeling. I havent been sleeoing well as im dreaming about thing having to do with medical things. I was feeling pretty positive about things after seeing my doctors the other day but now im wwiting on test results that will determine a lot of things. Emotionally im trying to be prepared for the worst yet in the back of my mind im trying to com to terms with whatever is and will be .I cried alot today. Im not sure if its being depressed about the situtation or the fact I was in such a hurry to get older so I could do all the things I always wanted to yet now I neither have the energy or sstrengh to do either. Its sad ,you work hard with a goal and then you sit on the edge of that goal not knowing whether your dreams are going to be shattered by something unexpected to but the saddness of not feeling good enough to do those things but as you said ,your friend had it really bad and scarry and he made it ,so there is always hope. Thanks for writting today. Maybe it was destiny that got you to share your friends story with me on such a day im feeling rather scared and not so positive. Thank you again

[Anxious_gal]

Aw sorry to hear, that is the worst about our anxieties, we can't seem escape them in our sleep A dream can have profound affect you, you wake up with the same feelings and sensations you had in the dream. I think that maybe that's how hypnotism works, kind of how the way dreams affect your mood.
It's ok to feel scared, lost, confused etc.. you still don't know the test results,
I am waiting for my stitches to heal in my mouth, I know I need a lot of dental work, but my dentist doesn't want to discus it until my mouth has healed up. The not knowing what kind of work I may need done and not knowing the cost is driving me crazy!
So I sorta understand your frustration with the waiting and not knowing what happens next Of course my situation isn't as bad as yours, but I am pretty phobic of the dentist lol
I dunno about you but I like to mentally prepare for stuff, not that it actually works, but I think that is what you were doing, preparing yourself for the worst outcome :(
I have been rather depressed, thinking oh I just wanna give up, but it helps to remember what goals you do have I must admit depression is one of those things, where the people around you can add to it and make you feel very misunderstood and hurt.
I get situational depression, I am depressed at the moment over my teeth and money cause I don't think I can afford my dental work without taking out a big loan etc ...
If I didn't have that to worry about lol I am sure I would find something else to worry about ;)
I do that a lot and it helps with depression to note the good things, even the little things like the above posters, post .
Have you thought about therapy or calling up a helpline?They are lot of groups for people who have different problems, I think you just need to feel not so alone in all of this x

[looking4answers]

Thank you Mishel for your supportive post. You always find a way to make me feel better and you and all the others here that have poured out your hearts with support, I am so greatful and never feel alone just freightened and depressed sometimes when I really dwell on things. Thank you and everyone here again for your thoughts and kind hearts!

[Anxious_gal]

Aw it makes me happy I helped you feel better :hugs::D

[looking4answers]

Got my blood test and 24 hour urine test back today and cortisol levels only are high ,everything else is normal. They are sending me for a test called the saliva test now and after that the Dex test . Im really concerned about what their thoughts are about everything but im not sure what they will find. All other levels are good but I do have a mass on the kidney and adrenal gland and I do have high levels of cortisol but i dont really have symptoms of cushings or addisons except perhaps high blood pressure so im not sure what will happen now and im feeling a little nervous and anxious.

[Anxious_gal]

doesn't cortisol play a big role in anxiety and stress, if you are stressed out for long periods of time, I do believe you will have a higher amount of it in your system.
It sucks that the doctors are moving so slow, but I guess it means they must not think it's too serious.

With addisons "With proper medication, patients can expect to live a healthy and normal life."
So thats one less thing to worry about :)

Lol you could be a doctor now with all your medical experience haha

Are you getting much support from friends and family?
I find they can get so stressed out and worried they take it out on you, it's pretty well documented.
It's almost like they want you to pretend you are not feeling unwell so they can delude them selves and there for not feel uncomfortable.
As much as it sucks, it does seem to be part of human nature :(

Hope your next set of tests go well :)

[looking4answers]

Yeah Mishel, I think the doctor thinks im just a anxious stressed guy tjat has two on functioning cyst or growths on my kidney and adrenal gland.... Im pretty sure that is what she is betting on but doing this test and the dex test might give her the results she is hoping for. I too am hoping for those results too. Family has been ok,about the same as usual,the wife gets a little stressed and acts weird. My best friend comes by every other day and visits and jokes and stuff but other friends have totally disappeared. Yet some people that I really rather not see are wanting to come by so overall things are ok that way. Yes as far as the drthing.....Im learning way more than I want to know and studying like I think ill be the one that solves whats going on..lol like fat chance of that happening. Anyway thanks for posting and checking on me .

---------- Post added at 00:01 ---------- Previous post was at 00:00 ----------

meant to say non functioning growths

[Anxious_gal]

Sorry some of your friends disappeared , i hate when people do that . .
Glad you still have people coming to see you :)

[looking4answers]

Well its ok..... I would say they were not real friends but I know they are ,but not sure what to say....but its ok....Im guilty of that somewhat especially when people were critically ill I suppose but yet the peoplethat disappeared are really busy too ,so that could be it too. Anyway thanks forsaying hello.

[Anxious_gal]

When you are ill people do disappear, whether it's anxiety, depression, or physical illness.
I hadn't seen my friend in ages, but she did call over tonight which was nice.
I do avoid people who I find stressful,normally it's more drama though than them being ill.
It's hard but try and look at all the good things, because when your mood drops you can easily miss all the good stuff in your life and be consumed by all the negative stuff.
Hope you are doing ok x :)

[Anxious_gal]

Hope your weekend is going good :)

[looking4answers]

Hi Mishel.No it didn't really go that well.I haven't felt well in the last couple of days.I feel really really tired.I stay up late yet wake early and I have been in a depression the last two days I can't shake.I did my saliva test tonight and it has to go back tomorrow.They send it to Mayo clinic and it takes another two weeks.The weather is changing and little things wear me out. My heart starts skipping for no reason here and there .I told my doctor but he didn't seem concerned.It sux to feel this way.. Im sorry..Thanks for asking though

[Anxious_gal]

The body reacts to depression very much line it reacts to having the full.
You feel drained , weak , tired , you avoid people , you sleep too much almost like trying to sleep off the depression / flu.

I'm sorry your not feeling well :(
Well when you're stressed or depressed you don't have the extra energy to deal with things.
It's normal to get more snappy , or take everything that goes wrong personally .

It's hard to seek comfort from people when you're down , peoe give the worst advice and totally ignore how you're feeling, just leads to more frustration .

Wow a two week wait for the results! I hope the come back ok and you don't find the wait too hard.

My heart gets skippy too. , it's worse when I'm in pain or stressing out or I'm missing out on sleep.

Sorry your sleep pattern isn't great , I've been falling alseep around 9am and waking up around 1pm the last few days. I always seem to wake up the minute my head hits the pillow.
It's hard to sleep when your mind, anxiety won't turn off :)

[looking4answers]

was thinking ,maybe the lack of sleep. I go to sleep around 3am to 4am mostly because my mind is keyed u yet I can never sleep past about noon. I think all the meds have something to do wit it but if I get uo and get moving alot my pulse reaches a certain speed and goes into skipping feeling. I know its not suppose to be real or dangerous it just feels that way or thats what they say but it scares me and makes me not want to do anything. I have tons of gas lately too and canyt tale tums nor prilosec because both interact with the meds so I take mallox and that helps a little. I hope it all gets better soon and thanks for posting. Ill try to get some rest maybe that will help.

[looking4answers]

Hi, its been awhile since I posted . I was suppose to have two more test. The late night salivary test and the dex test. My endo called today and said for me to keep my appointment with her in Jan and that my salivary test was normal cortisol levels so she wasnt goint to give me the dex test and she would send the test over to my regular doctor that I am suppose to have a appointment with in december. So I guess I dont have cushings,or pheocromacytoma or addisons or hyperplasa that they know of but they will probally do another ct scan in jan. Now I have to worry about what my doctor thinks about my kidney issue. I did have some sort of panic attack this morning on waking. i felt as if I was really hot all over ,flushed kind of. My heart was beating hard but nt fast ,and I went to the bathroom and my heart started beating really heart and even with me counting my pulse it did not seem to be beating real fast or really above normal faster but I could hear my heart in my ears and it sounded like it was beating three times as fast as my wrist was. I have had this happen to me on several occassions hearing this but normal feeling bet. Its very strange and worrisome. So im not sure where everything stands now and whether they are over medicating me with blood pressure meds. Its all confusing and worrying to me.But this is as much as I know right now.

[Anxious_gal]

Aw when my heart races it makes me feel that I should rest, but often my heart goes funny if I rest too much . So really I can't win :)
Glad to hear your test was normal :)
What medication are you on ?
I do know medication is often over prescribed to older people.
I guess you do need the blood pressure meds, I hope they are keeping an eye on that.
As for the heart racing , I dunno I'm in my 20s started off with just palpitations 4 years ago and now I have sinus tacycardia they call it.
My heart now races when I'm stressed , in pain , after i eat , if I stand up, etc. .
It makes me breathless n weak , it's very annoying.
I guess it's caused by stress , I hope it goes away eventually.
I do think being unfit is part of the issue too.
I can hear my heart beat in my ears and can pretty much feel my pulse everywhere .
Sometimes I can see my pulse on my tummy , chest and neck.
I get those sudden rushes of heat too, where I feel unbearable warm .
I have heard on medical shows that sometimes changing position can bring your heart rate back to normal , like lying down then sitting up.

[looking4answers]

Wow I have a list of meds that would take tolong to post. Guess I have to live with the heart thing the rest of my life,God knows I have dealt with itmost of my life. My pulse has been at 65 to 61 over the last three days but I have a constant ringing in my left ear.I just wish I couod have a few days with no symptoms. I wish that so very much.....

---------- Post added 10-11-11 at 01:00 ---------- Previous post was 09-11-11 at 21:05 ----------

Well relief was short lived. My doctor called today and said that my endocrologist said they have no reason to believe I have anything wrong with my adrenal glands but now they are wanting a biopsy on my kidney.He is afraid that I have some type of dangerous cancer in my kidney and they want me to get in to the same dr that I didnt get any answers from and let him do an mri and biopsy. My dr says that we have wasted two months now and if whatever cancer that he said I might have pops and spreads then there is nothing they can do for me .My doctor sounded urgent and scared me to death. The same urologist that I told my doctor I was uncomfortable with is suppose to do all of this. I am freaking out and dont want any of this and i dont trust the man they are sending me to and im scared to death . I want to run away and just let nature run its course . Im scared to death and very afraid. I csnt believe I was feeling more relieved now im more panicked than I have been ever. I just dont know what to do . I dont want this dr or the procedure and dont know why I have to go back to the same dr.I told my dr this and he says I can waste time looking for another urologist or go to this specialist and then get a second opinion.Im just so sad and scared and upset.

[xBettyBoopx]

Michael

Prayers, prayers and more prayers for your complete healing.
http://www.mdjunction.com/components/com_joomlaboard/uploaded/images/praying_for_you_my_friend.jpg

Love
Els
xxx

[LittleMissPanicky]

Hi Hunny, i don't post much on here, but i do follow your updates and just wanted to send you a big hug and hope that everything goes ok for you and that you'll get some good news soon xxxxxxxxxxxxxx

[Dibbler]

Sorry for not posting for a while Michael but I can assure you that I do follow your updates when I can get on the board and I wish you the very best for what must be a most difficult time for you and your family.

Lots of man hugs to you :-)

[donaldpeter12]

They may be able to remove the tumour rather than they may not etc. It sounds as if you will be in the very best of hands if you do have the op. And there are loads of people on NMP rooting for you.

[blue moon]

Sending you well wishes:hugs:and will be rooting for you too.
Love Petra xx

[Vanilla Sky]

Wishing you all the best , Love and hugs to you :hugs::hugs:

Paige xxx

[macc noodle]

Well relief was short lived. My doctor called today and said that my endocrologist said they have no reason to believe I have anything wrong with my adrenal glands but now they are wanting a biopsy on my kidney.He is afraid that I have some type of dangerous cancer in my kidney and they want me to get in to the same dr that I didnt get any answers from and let him do an mri and biopsy. My dr says that we have wasted two months now and if whatever cancer that he said I might have pops and spreads then there is nothing they can do for me .My doctor sounded urgent and scared me to death.

I simply find it so hard to believe that they can have wasted two months going up the wrong path -what is wrong with these so called experts????

I feel desperately sorry for you having to cope with this and it simply should not be allowed - I mean what on earth possessed them only to travel one path if they were not sure that this was the problem ? And, surely the shadows on the kidney should have been investigated alongside the possible adrenal issues??

I only hope that you can gather up your strength and get these issues dealt with urgently and find a resolution.

Good luck

Macc Noodle
xx

[looking4answers]

Thank you all for your caring and support. With all the confusion of my dr hearing from the endocrolohist and then wanting to send me back to a urologist I dont trust ,i freaked out and called my endocrologist to see what she thought. The nurse there told me they would check cancellations monday and tues to see if they ciuld work me in so we could sit down face to face and chat n person. She said she would explain what she did and what she thinks and I could ask her allthe questions I wanted to or need to. I was relieved at first but now I worry that she knows more of what I think she does because my dr was in a big hurry to get me back to the urologist he knows im afraid of....so im a little nervous and worried . Will post later more tonight.

[baileys]

My brother had kidney cancer, it was found on a scan one week and was removed the following week, regardless of all the other complications that he had the priority was to remove the kidney and tumor and treatment was started straight away.
You still seem unsure what you are dealing with.

[mandie]

Been following your post, i really feel for you with what you are going through.

Good luck and take care

mandie x

[suzy-sue]

Thinking of you Michael hope you get the answers to put your mind at ease.This has gone on long enough .Good luck and will look for your next update .Luv Sue xx :hugs:

[looking4answers]

I really dont know what is going on and am more confused by everything happening,although my endocrologist is going to have a talk with me if she can work me in monday or tues im still sitting going through a flashbackof sittinghere the night I almost died. My endocrologist is the only one that figured out that I had been in hypertensive crisisset off my the amount of medicines and the kinds of medicines that were given to me at the drs office the day i went to the ER. I found out that the ER drs thought I was having a panic attack but was suspicious of a pulmenary embolism and thats th only reason they a lung xray although when they did they started thinking I had something on my adrenal gland that cused a hypertensive crisis.So that started my admittance into the hospital and adminersting of high blood pressure meds when I probably dont need them. I am very freightened about wht my endocrologist my inform me of. She is very through and detailed oriented about everything. She is trying to get me worked in monday or tues to sit down and discuss things. In the meantime my regular dr wont call back to discuss urologist with my wife and im stuck in an endless cycle of being freightened and also worried. My regular dr talking of that thing burting the capsule and spreading when in fact they dont know for sure its cancer but they try to lead me to believe it is and ive wasted two months with the possibility of knowing it is. At this very moment im complplating just forgetting about whatever is there and just taking off and let life take its course. Fom what I have read,I sure dont want a biopsy ,nor kidney or adrenal operation. They are all dangerous. Survival rates for operations are very low for all and the chance of spreading cancer with biopsy is great.I wake everryday being afraid the meds they are giving me is already killing me and I feel as though im dying a little more everyday. At the present im taking metrepolol 75 mg a day also nifedipine xl 60 mg a day losartan 50 mg a day and 5 mg od valium in the morning and 5 in the evening and also flomax an alpha blocker .4 mg before sleeping. Flowmax is an alpha blocker ,metrepolol is a beta blocker and losartan potasium ,which is an angio receptor something and nifedipine xl is a calcium chanel blocker. Some of these meds according to what I have read are not suppose to be taken together. You arent even suppose to take ibprofen with metrepolol. Im really scared about these meds as I feel exhausted most of the time,depressed and weak but ive told my dr this and he says the benefits far outweigh the risk. I have read the side effects of all and they scare me terribly. I also take an aspirin a day and a multi vitamin. I have noticed as well a spot on my arm about an half of inch formed as a brown spot and then raised up and looking it up it looks like basal cell carcinoma . Its developed over several months that I have been home. I worry about that too. I was reading that each ct scan you have is equal to 400 xrays. I had five which gives me a total of 2000 xrays. I read also that the dyes used can cause cancer and do permanant damage in your body not to mention the scans and if you want some scary reading ,read up on the side effects of metrepolol tartate ,not to mention the other meds im taking. I feel at this moment that my life is hanging in the balance. Fate will determine the outcome and that only the simple things like picking pecans up from our yard and exercising a little makes life bearable.I get scared of dying and wonder why im afraid. I have had a long good life and well would it be so terrible to die. I love life but the worries of life trying to hold on to things so long and hard is just too much. It seems when I draw my last breath y worries are gone. But still im afraid and worry because its in my nature. Right now its late and im tired . I had my closes friend come by tonight and as I explained to him what might be going on he sat concerned but just as I have looked at people in the past that told me the samethings. You are at a lost for something to say. I have also had others make a big fuss about me like I have been told im terminal. It gives me the creeps. I also kkep geeting weird ice drop feelings all over my body like someone spraying water on me. I ask the dr about this and he said probably just harmless nerve endings misfirings,he doesnt know so what else can he say. My left ear has had a screaming ringing in time with my pulse for days now that seems to run paralel to a 65 -61 heartbeat constantly. Its one thing after the other and waves of depression sweep over me and make me cry for no reason ....but all through this im trying to stay positive but lets face it im just scared,plain and simple. I keep hearing my drs words in my ears that says if that capsule burst it will spread and there will be nothing we can do for you except they arent 100 percent sure its cancer or why would they talk about a biopsy? Its all so very confusing for me and terrifying for me as I know the tumor that is benign on my adrenal glad can become large enough to cause problems and can intermittently spew chemicals into my body ,so good news fr now mybe not be great news for the future. The endocrologist is suppose to scan it every three to six months for changes over six years. I know all of this sounds pessimistic but im trying so very hard to be strong and positive. Thank each and everyone of you for caring and thinking of me,

[Anxious_gal]

Huh my reply never posted :(

Hopefully the endocrologist will help.
Have you thought about getting a copy of your medical records?
I hope you get some real answered soon, it sucks when you feel so powerless and confused :(
All you can do is try n stay positive.
Enjoy the little things in life.
It's ok too to have off days n mope around ;)

I've a mole I need to get looked at, but not done so!
Going to try n get a Friday appointment .
Have you shown that brown spot to your doctor?

I often get ear ringing n a heart beat in my ear.
I've gotten what felt like rain on my head and face.

I'm so sorry you are still stuck in limbo.
I don't really know if a biopsy is that bad, on tv they make it loom simple and standard .
People get CT scans all the time but I know there is risk too :(
Maybe you could ask for avMRI instead as that is safe I think.

It could help to keep a diary. I keep one with appointments etc , and a few words about how my day went. It helps me keep track n feel a bit less frazzled :)

[looking4answers]

Im hoping that the endocrologist can help. I guess if they woul give up a copy of all my records and scans it would help me alot. My wife has contcted the head of some huge kidny cancer research center and he has recommended two doctors in New Orleans which is four hours from here. Im not sure what to about anything. I have decided that I wont have surgery or biopsy as they are both dangerous unless I have Da Vinci robotic surgery and ten Ill think long and hard about even doing that.Frankly im worried if they take my kidney and my adrenal gland that thet chemical suppliments they give me will make my life miserable and there is so much that could go wrong during and after treatment. I have come to the conclusion that if I die from cancer it was meant for me to do so. There have been greater persons than I die from cancer younger than I with much more to loose.The spot on my arm is not brown it only started as a round brown spot now that is pink or skin colored raised above the skin and no ,last time I was at the Dr I forgot to ask about it. I have been so nervous today. I startedlooking for a therapist that can do hypnotherapy and hope it can work on me to wipe out fear and anxiety. Mishel from what I have read the five ct scans and two ultra sounds and x rays should have told them what they need to know not even counting the blood work and urine work,they should know if I have it or not . I think they have always known and refuse to tell me. The ringing in the ear is worst today but I dont hear a heartbeat so far. I woke this morning feeling a little scared and have felt somewhat like that allday today.I feel trapped with no place safe to run and im terrified,but I think of all those before me that have gone before and many of them had no notice. At least I have some clue as to what could happen and have a chance to take care of my wishes if something was to happen.I have already decided to be cremated and I have a favorite chinese urn that my ashes will be in . Also half my ashes will be poured into a favorite body of water here in my hometown and then my urn will be buried in a container in a burial plot with my family. I also have talked to my wife about a tombstone design.I also am making choices for who I am leaving what ,with my wife being beneficary of most everything. It seems like when dying becomes a reality then material things loose their appeal and you stop caring about who will get what . Oh well I have rambled enough today. Thanks for checking in on me . :hugs:Michael

[macc noodle]

Michael

Sorry to hear it all seems to scary at the moment but have faith and hopefully you will get some answers very soon.

Here's hoping that it is all a storm in a teacup and that you will not need to concern yourself with anymore of this worry and stress after you have seen her and she has explained things.

Is your wife coming to the appointment with you so that you have two pairs of ears to take in the information? I know I always only half hear when I see a doc because I am so petrified of what they might say.

Good luck

Macc Noodle
xx

[miniholly]

Hi Michael just read all your posts, I'm sorry to hear what you're going through. I think wanting to know what's wrong is the worst part so you know what steps to take next.
I really hope everything goes okay for you, will be checking up on your updates. :-)
*hugs*
Take care xx

[looking4answers]

Oh yes,wife has been involved with everything since the begining. She never left my side in the hospital other than when they would not let het in for the ct scans or ultrsound but was there for me all other times. She will be with me at the doctors office because when im freaked out I never seem to completely understand anything. I have to ask her later to confirm what I was told and then many times I dont remember what was said at the appointment. Thank you all for your thoughts and caring and posting to me. It really helps when you know people care and are paying attention. As soon as I know something new I will update you all. Thanks again ,Michael

---------- Post added at 01:07 ---------- Previous post was at 00:27 ----------

One thing I forgot to mention my wife did secure a new government insurance for me its called pcip. It was signed into law in th US so that everyone could have the same insurance as the people that work or the government . Its suppose to be really ood health coverage for people with pre existing conditions. It cost almost 500.00 a month but has a low deductible and then pays 20 percent up to a certain amount then pays one hundred percent unlimited for as long as needed. It also has most all drs and hospitals in their network. So on a positive note I now have insurance.

[Anxious_gal]

Aw glad to hear your wife is being supportive :)
I hope you get better care with your health insurance.
Hope youre still doing ok :)