View Full Version : How do you believe tests when you still have unexplained symptoms?
Hi everyone!
*Trigger warning: stomach/pancreatic cancer*
I am looking to hear from those of you that have continued to have the same symptoms after testing, with no definitive cause of the symptoms. I read many stories where people have a test, the symptoms go away and then they move onto something new. This is definitely not the case for me.
Brief backstory. I developed HA in January of 2017. I have been having significant gastric issues since this time. Acid reflux, constant belching (hundreds of times a day, from the moment I wake up etc), regular nausea. I had literally never had any of these symptoms and woke up with them one day and this has caused significant HA. I take acid reducing medication and it helps with the heartburn but not the other symptoms. I have had a ridiculous amount of tests. I have had 4 endoscopes, 2 colonoscopies, 2 barium swallows, ultrasounds, a gastric emptying study and recently a CT scan. Nothing is coming back with the cause of the symptoms.
Here is where my HA comes in... I googled incessantly the inaccuracies of these tests and found about a type of stomach cancer that can regularly be missed. I also have read many reports of belching being a common sign of stomach cancer. I have expressed my concern to my GI doctor and the report of her last endoscopy stated "looks very healthy, no abnormalities". I also had a CT scan done (I had slightly elevated lipase that is now back to normal) and it literally said everything was "within normal limits". To me, I still worry that this is stomach cancer that has been misdiagnosed for 20 months. I don't know how to cope with the fact that tests do miss things and that I am still having unexplained, daily symptoms. I am not overweight, eat very well and have tried every diet (FODMAP) out there.
For other HA sufferers, how do you cope with continuing to experience the concerning symptoms, even after tests come back without an answer? Do any of you struggle to believe tests?
It's a hard one because while I don't think it's right to tell someone there is nothing wrong with them - when they do have physical symptoms, I do think that at a certain point/certain amount of tests (which you have definitely had and then some) it is fair for them to say whatever it is - isn't cancer. Yes it can be missed but 'regularly' is a bit of a misnomer, it certainly isn't missed regularly with that amount of tests under your belt. Plus as far as PanCan is concerned, 20 months with no treatment would leave you in a terrible state by now, if even here at all. So I think you can put that fear to bed at the very least.
My boyfriend has chronic health conditions and it is extremely infuriating for him being repeatedly told he's 'fine' when he isn't, although his situation is very different to yours. What we do understand however is that there does reach a point where they can't actually test for anything anymore and that isn't really their fault. They've done what they can and as far as their training tells them, if they show up fine, then so are you. For alot of specialists their job is only to prove you do or don't have what they are looking for, anything else is up to someone else. So if you still have symptoms, unless you have an extremely empathetic doctor or are paying privately, they kind of leave you hanging after that point.
To me your symptoms don't sound serious, especially with the tests as assurance. Is it possible that you were going through a particularly stressful period at the time and it is related to your anxiety? I understand the HA started after the symptoms, but your brain is tricky and it could be subliminal. Or any major lifestyle changes?
I can't speak in terms of the believing tests because I personally find that hard, but what I would say is yes misdiagnosis happens but once you get to upwards of 2-3+ tests I personally think it is safe to assume they are correct because the chance of them all missing it is virtually slim to none.
paranoid-viking
13-09-18, 14:16
Hi everyone!
*Trigger warning: stomach/pancreatic cancer*
I am looking to hear from those of you that have continued to have the same symptoms after testing, with no definitive cause of the symptoms. I read many stories where people have a test, the symptoms go away and then they move onto something new. This is definitely not the case for me.
Brief backstory. I developed HA in January of 2017. I have been having significant gastric issues since this time. Acid reflux, constant belching (hundreds of times a day, from the moment I wake up etc), regular nausea. I had literally never had any of these symptoms and woke up with them one day and this has caused significant HA. I take acid reducing medication and it helps with the heartburn but not the other symptoms. I have had a ridiculous amount of tests. I have had 4 endoscopes, 2 colonoscopies, 2 barium swallows, ultrasounds, a gastric emptying study and recently a CT scan. Nothing is coming back with the cause of the symptoms.
Here is where my HA comes in... I googled incessantly the inaccuracies of these tests and found about a type of stomach cancer that can regularly be missed. I also have read many reports of belching being a common sign of stomach cancer. I have expressed my concern to my GI doctor and the report of her last endoscopy stated "looks very healthy, no abnormalities". I also had a CT scan done (I had slightly elevated lipase that is now back to normal) and it literally said everything was "within normal limits". To me, I still worry that this is stomach cancer that has been misdiagnosed for 20 months. I don't know how to cope with the fact that tests do miss things and that I am still having unexplained, daily symptoms. I am not overweight, eat very well and have tried every diet (FODMAP) out there.
For other HA sufferers, how do you cope with continuing to experience the concerning symptoms, even after tests come back without an answer? Do any of you struggle to believe tests?
If you had developed stomach cancer 20 months ago you would have been very ill or probably dead by now without any treatment.
The fact that you are alive and not seriously ill by now just confirm that it is not cancer. That and the tests of course.
I knew someone who died of stomach cancer. It develops rapidly. Hed died a few months after diagnosis.
---------- Post added at 15:16 ---------- Previous post was at 15:15 ----------
I can't speak in terms of the believing tests because I personally find that hard, but what I would say is yes misdiagnosis happens but once you get to upwards of 2-3+ tests I personally think it is safe to assume they are correct because the chance of them all missing it is virtually slim to none.
It sounds to me like a kind of gastritis, which is extremely common.
The fact that you are alive and not seriously ill by now just confirm that it is not cancer. That and the tests of course.
I knew someone who died of stomach cancer. It develops rapidly. Hed died a few months after diagnosis.
---------- Post added at 15:16 ---------- Previous post was at 15:15 ----------
It sounds to me like a kind of gastritis, which is extremely common.[/QUOTE]
I wish I could believe things that other people are rationally able to deduct (ex. if you have been around for 20 months without serious symptom progression, it isn't what you worry it is). My CT scan last month came back perfect.
I had wondered if it was gastritis too, but my doctor told me there was nothing. My stomach looked "very healthy" and there were no abnormalities found at all. The biopsies they took randomly also came back normal with no inflammation.
I wish I could believe things that other people are rationally able to deduct (ex. if you have been around for 20 months without serious symptom progression, it isn't what you worry it is). My CT scan last month came back perfect.
You can because it's not opinion it's fact. Pancreatic cancer doesn't hang around for 20 months without getting worse. You would be dead.
I have had a ridiculous amount of tests. I have had 4 endoscopes, 2 colonoscopies, 2 barium swallows, ultrasounds, a gastric emptying study and recently a CT scan. Nothing is coming back with the cause of the symptoms.
Anxiety can and does exasperate digestive issues. That's fact as well as the tests you've had. I don't doubt you have symptoms, they're just not from some sinister illness. Then again, mental illness is as debilitating as the illnesses many here fear.
You have to continue to bombard your irrational thoughts with the facts. Other than that, professional real life help with your anxiety would also treat the symptoms you're feeling. Diet plays a huge part too. Look into the FODMAP (https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/) diet.
Positive thoughts
Thanks for everyone's feedback.
I have moments of rationality. I am only 29 years old, with no family history of any type of cancers. Both of my grandmothers are 93 years old, living independently. My nanny's mom lived to 101 and her sister 105! I always fixate on the statistics in a different way. People might feel reassured by 1 in 1,000,000, where I think... someone has to be that 1 in a million.
I also realize that it makes it more unrealistic after almost 2 years, no worsening of symptoms, multiple endoscopes (over a year apart) and a perfectly clear CT scan. I just wish these symptoms could be explained. Unexplained symptoms are my crutch.
Maybe you should try to accept that these symptoms have no explanation? Surely your psych must be helping you with this?
If there is no evidence of heartburn/gastritis, I wouldn't be taking long term PPIs/acid meds
ankietyjoe
13-09-18, 20:35
Stomach issues aren't unexplained if you suffer with anxiety. There is a direct connection between the mind and the digestive system.
The medications you are taking are to try and take the symptoms away, but don't deal with the issues causing the symptoms.
If you had stomach cancer, after 20 months you would be dead. It cannot be that.
It's also pretty well documented now that antacid medication prolongs issues, if not makes them worse over time.
I would focus on your anxiety 100% and try not to worry about the symptoms of the anxiety.
I also realize that it makes it more unrealistic after almost 2 years, no worsening of symptoms, multiple endoscopes (over a year apart) and a perfectly clear CT scan. I just wish these symptoms could be explained. Unexplained symptoms are my crutch.
The thing is you are still ignoring what everyone is telling you alongside medical fact. You don’t have stomach or pancreatic cancer, not unrealistic - not possible. I’m not disputing you have symptoms but the cancer fear is completely unfounded.
Thanks everyone.
It is interesting that we can read other people's posts and think, "there is no way something like that is wrong", but we never seem to believe it with ourselves.
My biggest issue was googling hard to detect types of stomach cancers or pancreatic cancer as well as the misdiagnosis rate of the tests. I wish I never had done that.
Thanks everyone.
It is interesting that we can read other people's posts and think, "there is no way something like that is wrong", but we never seem to believe it with ourselves.
My biggest issue was googling hard to detect types of stomach cancers or pancreatic cancer as well as the misdiagnosis rate of the tests. I wish I never had done that.
But you did and we all make mistakes but you can move on from this with the help of your psych support team. You have to move on for the sake of your young family and you have to stay away from doctors who are happy to send you for endless unnecessary tests and don't challenge your HA.
paranoid-viking
14-09-18, 09:15
I had wondered if it was gastritis too, but my doctor told me there was nothing. My stomach looked "very healthy" and there were no abnormalities found at all. The biopsies they took randomly also came back normal with no inflammation.
You need endoscopy to detect gastritis.
You need endoscopy to detect gastritis.
I have had 4 endoscopies with biopsies. No sign of gastritis.
escapeartist
05-10-18, 14:03
Sometimes it helps to put a name to the symptoms. Look up 'functional dyspepsia', or other 'functional disorders of the GI tract.
They are very common, and they basically are symptoms that cannot be explained, but are also very real. The good news is they will not kill you, and for some functional GI problems antidepressants, especially old style tricyclics can give some relief.
You are not crazy, but also it sounds like you do not have cancer. Great news all round.
Hope this helps you move on!
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