View Full Version : I feel like doctors are missing advanced cancer. Feel like everything is adding up.
TRIGGER WARNING: STOMACH CANCER DISCUSSION
I have had stomach issues for a year and a half. I literally woke up with reflux and constant burping (100+ times a day) and of course, when you google constant belching... stomach cancer comes up. At first I thought it was indigestion, but then I realized I wake up burping (empty stomach) and burp within seconds of consuming anything. While eating I get so bloated, but it is relieved by burping. I have had 4 endoscopes, 2 barium swallows, a CT scan and multiple ultrasounds. Only thing they saw was that I refluxed even water (on an empty stomach). I told my last GI that I was worried about stomach cancer and the report I got said : looks very healthy, no abnormalities found. After any test I google accuracy and assume I am one of the people that has stomach cancer undetected. I do not have any of the alarming features that would point to stomach cancer.
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Fear number 1: Doctors are missing stomach cancer on tests. I worry I have a hard to detect stomach cancer.
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For me, I feel things are "adding up". In January of 2018, my liver enzymes started to elevate so I had an ultrasound done. Everything came back clear. Few weeks later, I had another ultrasound that found a 1.2 cm enlarged lymph node near my liver. The radiologist noted it was normal appearing and no follow up required. I absolutely LOST my mind and am convinced they are wrong. Since that ultrasound, I had a CT scan (that noted no abnormality and no enlarged lymph nodes) and 3 other ultrasounds that didn't note a lymph node. Even the first ultrasound I had (a few weeks prior to the one with the lymph node) said everything was fine. So this is my second obsession.
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Fear number 2: The lymph node is actually malignant and the other tests have missed it, as they weren't looking directly for it.
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My third obsession is my liver enzymes. I am a healthy weight, no fatty liver, do not drink any alcohol, smoke etc. I am vegetarian. Recently, my ALP liver enzyme was elevated. When you read this, it says it can be either liver or bone mets. Cue my complete panic once again. Another ultrasound done. Everything says normal. When I read stats on accuracy of ultrasounds for liver mets, it says it's only 40-70% accurate. It was only 1 point over, but still increased from before. I don't know what typical levels of ALP elevations from liver or bone mets would be, but I am afraid to look it up.
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Fear number 3: Either liver mets that is being missed in testing, or bone mets that hasn't been found.
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I just don't know what to do anymore. I am on medication, have psychiatrist, psychologist and a social worker. I don't believe any of the doctors and am convinced they are missing stomach cancer.
Well, that is a very hypochondriac response.
If you have really had all those tests, and they all found the same thing, you need to give it up. That is a boatload of tests.
It also sounds like you are exaggerating the strangeness of your results (like a 1.2 cm node has got to be be in normal range and the liver enzyme is just barely out of bounds, you say). That is also a hypochondriac thing to do- inability to keep anything in perspective and expect physical perfection or normalcy at all times, when that is not how bodies are. I think the simple act of testing means cancer in our minds, when just getting screened means you are at a low level of suspicion for doctors.
What does your psychologist say?
What do the doctors say about the cause of your indigestion and burping? Can they help you stop it? (at the least seems like burping a hundred times a day is a physical thing to solve if you can)
I have been where you are. I know it's hard to accept that there is no certainty in life. But, that's kind of what we need to do. We need to put limits on ourselves, realize there's only so much you can do, and you can never know with certainty but doctors have not interest in misleading.
Thanks for the response.
I definitely agree that with Health Anxiety, we are likely to focus on results slightly out of the norm. I never believe the concrete tests that tell me I am okay.
Everything I had read online told me nodes over 1 cm were suspicious and now I can't get that out of my head.
Everything I had read online told me nodes over 1 cm were suspicious and now I can't get that out of my head.
I'd like to see "everything" you read because I had Squamous Cell Carcinoma of the Head and Neck, had two 5+ CM nodes and twenty three additional nodes removed from my neck for good measure. I know nodes. I learned from the best at Johns Hopkins. Everything you read is 100% verify-ably false!
Positive thoughts
Worrywart1234
15-07-18, 08:31
In my experience the most damaging part of health anxiety is not believing what your doctor tells you. From the anxiety’s perspective it’s the most effective method - because it allows your anxiety to grow unchecked for years. For me personally, it stopped me from getting my anxiety under some sort of control for years because I never believed what I was told.
Doctors have been to the hardest form of educational institutions for years to gain their knowledge. It’s important to trust in their expertise.
Leaving their knowledge out of it, think of legal accountability and so called ‘ambulance chasers’ - doctors are not knowingly going to risk a lawsuit. If anything, they are going to take it in the other direction.
Also, doctor google is your enemy, not your friend. The worst thing you can ever do for yourself is google anything, for any reason whatsoever.
Here’s hoping you can find a bit of peace of mind :)
I'd like to see "everything" you read because I had Squamous Cell Carcinoma of the Head and Neck, had two 5+ CM nodes and twenty three additional nodes removed from my neck for good measure. I know nodes. I learned from the best at Johns Hopkins. Everything you read is 100% verify-ably false!
Positive thoughts
Thanks Fishmanpa,
I haven't been googling in a long time, but when I first had the node in January, I remember reading many sources that said a benign node is under 1 cm and a malignant one is over 1 cm. This gets my anxiety going just thinking about it. And I don't want to google it, in case it continues to confirm my fear :(
I recently had 3x3cm thyroid nodules discovered incidentally on an MRI scan for an unrelated issue.
If I'd studied the internet I would now facing a thyroid cancer diagnosis. Instead I trusted the biopsies carried out on MY nodules and analysed by MY endocrinologist who confirmed that they were all benign despite their size.
It's what's going on in YOUR body which is important, Casey. You've bought numerous scans-no one has challenged you on this, not even your psychologist or psychiatrist apparently..... if they know what you are doing, that is? And you didn't respond when I asked you this question a while back on a very similar thread.
I recently had 3x3cm thyroid nodules discovered incidentally on an MRI scan for an unrelated issue.
If I'd studied the internet I would now facing a thyroid cancer diagnosis. Instead I trusted the biopsies carried out on MY nodules and analysed by MY endocrinologist who confirmed that they were all benign despite their size.
It's what's going on in YOUR body which is important, Casey. You've bought numerous scans-no one has challenged you on this, not even your psychologist or psychiatrist apparently..... if they know what you are doing, that is? And you didn't respond when I asked you this question a while back on a very similar thread.
Hi Pulisa,
Thanks for following up. They never did a biopsy on the lymph node. I may go and talk with my family doctor and let her know how much this is bugging me. Even though, I had a CT scan to check my small bowel and they said they didn't see any suspicious lymph nodes and I have had a few more ultrasounds come back clear now too. I am wondering if that means it is now back to normal, or are the other tests missing it?
In terms of my psychiatrist and psychologist knowing, they do in fact know about all the tests. I live in Canada so I don't pay for testing, but have been sent by my GP and GI doctor. I am imagining they are trying to reassure me? I know I told the GI doctor that has done my scope that I was worried about stomach cancer. She told me everything looks perfectly healthy, but I can't stop worrying about a stomach cancer that is hard to detect. Whenever I look up burping on the internet (looking for non-cancer things), stomach cancer comes up all the time.
Thanks for explaining, Casey. Your GP and GI doctor must know that you are being treated for HA so I take it they aren't aware how reassurance never works and think they are helping you? It's a shame all the professionals who are involved in your care can't get together to work out a therapeutic treatment plan because whatever benefit you are getting from the psychological input is being counterbalanced by the endless medical tests you are being sent for . Do you think you have benefitted at all from seeing the psychologist because continuing to look things up on the internet is just so destructive and you will ALWAYS find something to fixate on.
I know you will now ruminate on getting a biopsy for the lymph node. Over here if there was ANY doubt a biopsy would be taken if the node were large enough to give a conclusive result.
Thanks for explaining, Casey. Your GP and GI doctor must know that you are being treated for HA so I take it they aren't aware how reassurance never works and think they are helping you? It's a shame all the professionals who are involved in your care can't get together to work out a therapeutic treatment plan because whatever benefit you are getting from the psychological input is being counterbalanced by the endless medical tests you are being sent for . Do you think you have benefitted at all from seeing the psychologist because continuing to look things up on the internet is just so destructive and you will ALWAYS find something to fixate on.
I know you will now ruminate on getting a biopsy for the lymph node. Over here if there was ANY doubt a biopsy would be taken if the node were large enough to give a conclusive result.
Hi Pulisa,
I really appreciate your responses! I am committing myself to no more googling. Our healthcare is very similar, and I know if there was any concern they would have sent me for further testing. The radiologist said it was normal appearing. My anxiety always shifts to the doctors missing things. So instead of me being wrong, I believe that all the other ultrasounds missed it, the CT scan missed it and the ultrasound that found it, the doctor was wrong and misdiagnosed it. I hate health anxiety. I want to find a radiologist that will look at the ultrasound and the CT scan afterwards to ensure it isn't there.
The psychiatrist is working closely with my GP. I used to doctor hop, but I don't do that anymore.
I don't think you will find that elusive radiologist though...HA is making you continue your search for that 100% clean bill of health but it's a tortology. It doesn't exist. Your interpretation of "ensuring" won't be acceptable with your current mindset.
It's the old mantra of living with uncertainty and accepting that you will have to live the rest of your life with uncertainty which we all have to do regardless of whether we have HA or not.
But you have a choice which people who have a poor diagnosis as a result of having the same tests as you have had done sadly do not.
I don't think you will find that elusive radiologist though...HA is making you continue your search for that 100% clean bill of health but it's a tortology. It doesn't exist. Your interpretation of "ensuring" won't be acceptable with your current mindset.
It's the old mantra of living with uncertainty and accepting that you will have to live the rest of your life with uncertainty which we all have to do regardless of whether we have HA or not.
But you have a choice which people who have a poor diagnosis as a result of having the same tests as you have had done sadly do not.
Hi Pulisa,
Thanks for responding, I do truly appreciate it. I am driving my husband absolutely mad with this. I float between worries of pancreatic cancer and stomach cancer. I read my GI report that says "looks very healthy, no abnormality" and then I google hard to detect stomach cancers and convince myself of that. I realize how unlikely it is for all of these tests to miss and misdiagnose everything.
Tolerating uncertainty is something I really struggle with. I just don't know how to let go. I know I need to stop with all the tests. Each test I get, something else pops up that convinces me it's cancer and sends me for more tests (the lymph node and elevated ALP is doing that right now).
Casey, the more tests you have the more incidental findings there will be which have no pathology and are of no medical significance.
If your psychiatrist is working closely with your GP surely the GP shouldn't keep sending you for unnecessary tests? I really don't understand why you aren't being challenged by your GP because he/she really isn't helping you when you yourself know that you need to stop putting yourself through this torture. But you need those professionals working with you to help you not enable your HA to keep going.
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