View Full Version : Been a long time since I had this....(don't read if you are easily triggered)
Its been a long time since I had a full blown pre-panic, but I'm about there now. If you have read any of my posts, I currently have a 3cm esophageal lesion/lump in my distal esophagus. It was found incidentally on an endoscopy I had on January 18th. I see my Gastro tomorrow morning to discuss the test I am having on Friday. An endoscopic ultrasound to characterize the lump. Basically figure out if its benign or not. I know this place is for anxiety, and usually people that have anxiety about things they are creating in their heads, but I am full out scared about this. I have pain in the area I know the lump is, but it comes and goes. I have had reflux for years, but it has recently been worse. I already suffer from autoimmune liver disease, which causes me pain on that side from time to time.
I don' know what I want, but I am so afraid that this lump is cancer I can' t even see straight. I know the worry about this is causing my reflux to be worse an causing a great deal of stress of my body. But I can't shut it off. I've had cancer before, but it was an easily curable kind, not like EC.
I am truly in tears and trying to hide it from my husband, who though supportive, thinks I am overreacting until I know for sure what is going on. I've had a lot of medical things in the past four years, so I 'm just not very confident. I have a deep faith, that I rely on, but sometimes it just gets to be too much. Just wanted to talk to someone tonight.
I know how you feel. I have gone through the cancer screening process four times, and that is not counting the many skin biopsies and suspected melanomas (had two or three of those).
What I found is that the night before a test and then waiting for results is hell for people with HA. I also know that, in each of my 4 instances, I exaggerated in my mind what screening for cancer really means--- none of my four lumps (one breast, one persistent node, one lump on my urethra, one soft tissue mass) was cancer and, at the screening stage (your stage), lumps and bumps and masses are much more likely to be benign than cancer; it takes a lot of benign biopsies even to find a single cancer, and you are not even at biopsy stage. It's not possible for HAers to see it clearly though and, I've decided, that's okay. If you are going through testing, give yourself a little freedom to be as negative and torn up as you want, or take it as an opportunity to practice calm and meditative. Just do what you need to do to get through it, as it is a waiting game at this point. I wold also tell your husband what you need and, if he rolls his eyes, fine and dandy. My husband is not the most supportive when I am in a spiral but, generally, even he gets that the night before a test is anxiety producing.
Whatever happens, you are going to be okay. You are doing what you need to do, and I hope you come back very soon with the best of news.
MyNameIsTerry
20-02-18, 01:47
It's going to be tough until the time comes and there is only so much you can do as anyone without anxiety gets worried about a lump their doctor finds.
So, perhaps all you can do until tomorrow is try to reassure yourself that if a doctor suspected a cancerous lump he/she would be more candid about it?
When both my dad & brother had lumps (my brother's was in his throat) the specialist was open with them about the fact he could not rule out cancer but in his opinion it was very unlikely. Both came back fine. He said they had to clear with patients so they aren't in the dark about the possibilities. Even so, that obviously brought some worry for them as people without anxiety disorders.
In my brother's case it was a swollen node that had been aggravated by too much forceful coughing due a problem he has with a partially collapsed nose.
So, could reflux be a cause of irritation for something like that? If so, that points to a very likely cause and surely the doctors have mentioned this? Again, if so then you need to hang onto this and do what you can to calm your body & mind with any techniques you have learnt to manage your anxiety.
I know little about oral cancers but from listening to others on here who do, and from understanding it's an aggressive cancer, then wouldn't there be some very unpleasant symptoms that jump out to say something is wrong? I do understand lung cancer, another aggressive cancer, and from those who've had it there was something very clearly wrong with them by the time any symptoms came about. So, perhaps this is something to hold onto too i.e. I have a lump but I should have some bad symptoms and I don't?
That all sounds easy, I know it won't be but when presented with a test such as this there is only so much any of us would do without the challenges HA will be adding on top. You have us on here to get support off and we will be sending positive thoughts your way.
Hang in there. :hugs:
Thank you both for your response. I've had the pain I mentioned off and on for a while (likely almost 2 years) which makes me feel a little better. EC is very aggressive and I would think that It would have grown by now. I have some symptoms, but all are easily GERD or Hiatal hernia related stuff. I guess if I didn't have that pain back there I would be less worried, but probably not. My Gastro told my husband after my last endoscopy (I was still out) that the lesion could be tested if I so chose to do so, not "she needs this tested asap" But then I have not been able to talk to him again. So tomorrow will be the first time I got to speak to him since I found this thing. (He was out of the country). I've looked at pictures of similar lesions (I have a picture of mine) online and most of them are benign. The scary thing is that it says that benign esophageal lesions are extremely rare. I read something else that said this was mainly because most that cause symptoms and are found are cancer. Mine was found incidentally. They say that these lesions are about 20% of all lesions on autopsy. So people have them, but the true incidence isn't known, because people don't realize they have them. I've had over a month to stew about this and now that the test is Friday, I'm really losing it a bit The test is being done at a large hospital in Indianapolis close to a cancer center, so that doesn't help me much either. Again, thanks for the responses.
MyNameIsTerry
20-02-18, 02:56
Yes, that's a very good sign. No doctor, especially a specialist, is ever going to leave it to you to decide if you want a reassurance test - they will strongly recommend you need one.
Two years, another good sign. Cancer survivor rates are quoted as with treatment, so an aggressive form like this would mean a doctor wanting to write your case in medical literature as you would be a miracle untreated to them.
The pictures are another good sign, although obviously leave that to a doctor. But then a doctor trained to spot the need for follow up tests, even if not presumed cancer, has looked at it and thought it wasn't worth following up - always a massive good sign from a doctor.
I can understand your worry about them being rarely found benign but my GF had the same situation with a tumour. She was having what they thought was kidney stones due to the pain and a scan revealed a tumour wrapped around one of her ovaries, hence the pain, which is something bound to scare anyone. The specialist explained it was a specific form of tumour that most people will live their whole lives without realising as they only tend to come across them if they start to cause problems hence need removing. He said she was likely born with it and something had sparked the growth and it was only because of where it was growing that it presented at all. By then she was 39!
So, some weird things do happen even with scary sounding things like this. It sounds very strange to us as such words have very obvious meanings but to doctors they know different.
Perhaps tell your husband that you are worried and need his support but try to keep control of the overwhelming feelings of it if you think it will put pressure on you both? You have people on hear to talk too about that, but ideally I would think your husband would want to be their to support you as it's very much his role.
I spoke to my husband and he is fine. He just says he won't worry until he is given something to worry about. He really is my rock most of the time and I love him dearly for it. The only thing that bugs me about what he said on whether the test was up to me or not, was something the nurse said. A week after the other endoscopy she called me and said he had left the information and wanted me to schedule the test. I tried to get to just wait till he returned and she, "well I think he wanted this done before he got back." So then I started to panic and I told her to read me the notes he left and it was what he said to my husband. So I can only assume my doctor knows I would want to check it out because I worry (and my husband said I wanted to check it) and left the information for me while he was gone. Little things like that just drive me crazy. I guess I will know tomorrow. I just pray that he isn't going to be totally different tomorrow and make me even more nervous. Like, "you really should have gotten this scheduled already" or something like that. I trust this doctor, but he has a small practice and I sometimes wonder about one of his nurses. So definitely feeling anxious about that part. Thank for what you have said so far. Glad your GF turned out to be ok! I had an emergency ovarian torsion so I know that stuff can be dicey.
MyNameIsTerry
20-02-18, 04:54
Possibly just a nurse covering her back there. If the doctor has meant he wanted it then she would be in trouble if she downplayed it and given the kind of things they can come across it makes sense they may lean towards playing safe but she really should have asked and not made poor assumptions. It would annoy anyone though, receptionists often do it.
I don't think they will say you should have come earlier because that takes us back to the doctor doing his job properly. No doctor would leave it if it was needed so other than a mistake (another little "in" for anxiety) it's very unlikely. You trust him so if that doubt tries to invade your mind try to let it go without reacting negatively to it because importance is what these thoughts build off.
Thanks, my GF was fine. She needed keyhole for it and it has left some minor scarring but she's been fine ever since. They did a biopsy on it as standard and it only confirmed what they already knew. The only complication for her was because of them cutting through muscle so that took some time to fully heal and she had pain for a while but they didn't even need to remove the ovary it had wrapped around. Pain like kidney stones is no fun as I'm sure you found with your torsion!
The same with my dad & brother, all clear and exactly what the consultants involved thought. In my dad's case it was the motivator for him finally giving up smoking for good after sitting around with others waiting for similar tests and seeing their worry.
I'm so sorry you're going through this scare big *hugs* to you. I'm also sending you up some prayers!!! I want to add my mom was having strange symptoms for a while and saw her ENT and found out she had lumps in hers, the Dr confirmed that they're cysts. She goes every 4 months to have them checked, 2 years later they're still the same.
Keep us posted!!
I wonder why the doctor didn't biopsy the lesion during your endoscopy? I'm sure if the lesion looked remotely suspicious he would have done it there and then?
I do wish you well for your appointment and I hope he can answer all your questions so that you can decide on what needs to be done or if it would be better to monitor this. I know the waiting can be awful and it's unbearable when you have HA but you don't have long to wait now before you get some facts to replace the what ifs.
WiseMonkey
20-02-18, 09:26
I wonder why the doctor didn't biopsy the lesion during your endoscopy? I'm sure if the lesion looked remotely suspicious he would have done it there and then?
I do wish you well for your appointment and I hope he can answer all your questions so that you can decide on what needs to be done or if it would be better to monitor this. I know the waiting can be awful and it's unbearable when you have HA but you don't have long to wait now before you get some facts to replace the what ifs.
Hi pulisa, I asked the same question a while ago but got no reply! Same question but on different thread.
countrygirl
20-02-18, 11:59
So sorry you are going through this. Sending hugs.
I wonder if in uk different proceedures apply. I have a friend with barratts oesophagus which was identified during endoscopy but biopsies were taken at that time. It did take 5 weeks for her to get results but she was told straight away what was suspected. When confirmed she has had to take high dose of proton pump inhibitor to stop stomach acid and she has had a close eye kept on her with regular endoscopies and biopsies. This was 5 yrs ago. Her area has reduced in size and she only needs endoscopies every 2 yrs now. Whilst barratts is a condition that requires monitering because it is a pre cancerous condition it is very secessfully treated and monitered.
Totally empathise with the horrors of waiting for tests and results.
Thanks everyone. He didn’t biopsy because he wasn’t set up for it. The type of lesion this is they don’t like to puncture until they know more what they are dealing with. I had the same question when I woke up last time.
How would he know what he was dealing with without a biopsy though?
No idea but he said he couldn’t biopsy it. Why I’m going to this other place.
How would he know what he was dealing with without a biopsy though?
Imaging will give an idea if it is suspicious for malignancy.
When you cut into cancer, you can actually spread it into the bloodstream. So, when I was suspected of sarcoma, my doc was REALLY conservative with surgery and preferred imaging to biopsy.
Imaging will give an idea if it is suspicious for malignancy.
When you cut into cancer, you can actually spread it into the bloodstream. So, when I was suspected of sarcoma, my doc was REALLY conservative with surgery and preferred imaging to biopsy.
This is what he said today. I had an appt at 9 am this morning. He told me that this lump, though something he cannot ignore, it appears benign at least on the outside. He can't overlook it though, because he doesn't have the equipment to look inside. He admitted that this type of lesion is rare and he doesn't see these often. I was at a small regional hospital, so his equipment was limited. He did say that if this was cancer, it wasn't the normal EC we see where people's chances are very small. He said that kind is usually very obvious and he can diagnose that most of the time on just visual observation. He said if this was cancer or Leiomyosarcoma , that would be a rare cancer in itself, so prognosis may be completely different.
Though I feel better about that, obviously still nervous overall. He really tried to make me feel better, and bed side manner isn't his forte normally. He could tell I was upset and told me that my liver disease was more than like a much bigger issue than this "bump"
I think you will be much better off having this procedure in the larger hospital where you will be able to be treated by doctors who can give you a full diagnosis and prognosis. They probably have more experience of assessing oesophageal lesions too.
I wish you all the very best for Friday and I do hope that you get some definitive results. The not knowing must be very stressful-I really hope that you get reassuring news and that the test goes well.
Thanks Pulisa. Yes, this place is the only place close that does this specific sort of test, so its very specialized. Glad my insurance deductible is already met! One intervening problem is that I have a sinus infection that I thought was on the ropes and now its comes back. If I can't breath out of my nose and have respiratory symptoms, they may want to reschedule. I'm going to wait to the absolute last minute though. This place I'm going is about an hour and a half away, so I don't want to get down there and then they say...um, sorry we can't do it now. Luckily, my fever has gone away. At least so far.
I'm getting more past the panic now and getting to the "let's get this stupid thing done." phase.
I know what you mean only too well!
Will you be under GA for the procedure? I really hope you can keep your temperature at bay-hopefully the worst will be over by Friday. I remember swilling cold water round in my mouth just before I had my temperature taken before surgery once and it worked! I'd got this far and couldn't bear the thought of having to go through all the anticipatory anxiety again on a different day!:D
Sod's law we always go down with a bug just before surgery is scheduled. I will send healing vibes across the pond to you!!
I know what you mean only too well!
Will you be under GA for the procedure? I really hope you can keep your temperature at bay-hopefully the worst will be over by Friday. I remember swilling cold water round in my mouth just before I had my temperature taken before surgery once and it worked! I'd got this far and couldn't bear the thought of having to go through all the anticipatory anxiety again on a different day!:D
Sod's law we always go down with a bug just before surgery is scheduled. I will send healing vibes across the pond to you!!
LOL! Good one! The way i felt I was more on the side of making my temp go up to get out of it! Now that I want to have it my head starts draining and making me miserable. I am not cancelling unless I am far worse tomorrow.
I think I will be under GA for this ,but I'm getting conflicting information. Since there is a biopsy and maybe a resection involved I think it will be GA or at least the next step to it. But I was told I was having an anestheiologist there so , I guess its GA. I know thats more serious not to have respirtory stuff with that, than with just conscious sedation.
Just sending some good vibes and positive thoughts. Sounds like you have a good doctor that's practicing CYA (cover your ass) medicine.
As a survivor, the mantra is "It's not cancer until they say it is" ;)
Positive thoughts
Just sending some good vibes and positive thoughts. Sounds like you have a good doctor that's practicing CYA (cover your ass) medicine.
As a survivor, the mantra is "It's not cancer until they say it is" ;)
Positive thoughts
Or just a good doctor that looks into everything. :)
Thanks. I was thinking of your mantra last night!
I think you need this doing for your own peace of mind and you're obviously going to a centre of excellence where they are experienced in these procedures.
Not long to go now. Sounds like you will be having a GA-just better to be out of it! Look after yourself tomorrow and get your nasal tubes nice and clear!:D
Well my sinus got worse and I called this morning. Since I am struggling to breathe through my nose they didn’t like me doing. Of course now they can’t get me in until March 16. I thought I could get in the 2nd. Hope that isn’t going to cause me bad issues if this is serious.
I'm so sorry-it's really bad luck to have this bug now of all times. Surely you would have been able to reschedule way before 16th March if there were any major concerns about the lesion and the need to investigate it urgently?
Well I hope thats right. But I'm not sure this center really knows my history down there. I didn't call my doctor, but this was the first time they had open. After talking to my doctor on Tuesday I didn't get the feeling that this was something I had to do super quick, just we can't ignore it and not let it go. At this point I have already waited a month and a half. I don't think 3 more weeks is going to be the end of me. He told me this wasn't the type of EC he is looking at (the quick moving kind). If this is cancer it usually is pretty slow moving. Its not ideal and I was kind of upset I had to wait another three weeks, but I really just don't feel like I can do it in my present condition. I am still going to work, etc, but being put under anesthesia and using a scope is traumatic enough without being sick on top of it. But the main thing is the anxiety waiting. I just know that my regular EGD was pretty traumatic to me (which it normally isn't) and I just don't want to go into it sick. On the up side, I should be pretty well over this crud by then.
Yes you will but keep away from people sneezing and coughing at work in the run-up to the 16th! I know it's impossible to 100% avoid viruses but do all you can to keep well.
You have done the right thing to delay this procedure although you just must want it out of the way. Have it done under the best circumstances and then you aren't at any risk of post-op infection or complications.
3 weeks must seem a long time at this moment to wait-purely from the anxiety side of waiting-but hopefully the days will go by as quickly as possible for you and you will be able to find things to distract you. Never easy, I know..
I know! I was concerned yesterday that I should have pushed harder to have this done today, but I started blowing nasty gunk out of my head today that proved how congested I truly have been. So I feel better about it. My doctor has reassured me quite a bit so though i know I will have anxious moments between now and then, I don't feel the doom and gloom I did. As I stated earlier I have a deep faith and I know God knew I needed that little bit of encouragement from the doctor and it came at the right time. I'm sure when three weeks has passed and the day is getting closer, the anxiety will get a little worse.
Post on here if we can help in any way or if it helps you to offload? We all know how horrible waiting for tests and ops is. When the day arrives you just get on with it but the build up is never easy. I'm glad you have your faith to comfort and reassure you though.
Look after yourself and keep blowing all that gunk out of your system! Far better out than in!!:D
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