When you get a clear test, do you think of ways it was missed?

[Caseyg89]

Hi everyone!

I have severe OCD, that over the past 18 months has been cancer focused. It started with a fear of ovarian cancer, followed by colon cancer, pancreatic cancer, esophageal cancer and stomach cancer.

My stomach cancer fear started February of 2017. In this time, I have had 4 endoscopes (all have come back completely clear), a CT enterography (looks at small bowel and all other abdominal organs), a barium study and multiple ultrasounds. I cannot for the life of me, shake this fear.

******Trigger warning- would recommend skipping the section under this if you are currently worried about stomach cancer******

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After having all of these clear tests, but continuing to have symptoms (despite a PPI), I started googling incessantly about endoscopes missing stomach cancer and came across a rare type of stomach cancer that is often missed by tests. . It is of course, extremely fatal. Since I was having symptoms but nothing was showing up in my tests, I convinced myself it must be this type. I asked my GI doctor about it before my last endoscope and she told me that it is difficult to detect, but extremely rare (she has seen 2 cases in the past 10 years). She told me she was going to do the scope to make sure there was nothing going on, but she knew my underlying fear. I outright told her about the stomach cancer I was worried about. The report I received states "looks very healthy, no abnormalities". Of course, I still worry that I have this difficult to detect cancer. I read lots of stories online of people diagnosed with this type of cancer after months and months of misdiagnosis.

**** Stomach cancer trigger done****

So what I want to know, is this a common feature of health anxiety? Once you get a clear result to research how things get missed and then convince yourself you are one of those cases? I see many people say that once they get the all clear, they just move on to another fear. I am not even moving onto another fear. I worry it was missed.

[fidgetninja]

Yes, a hallmark of healthy anxiety is the reassurance seeking. The problem with the reassurance seeking is that it's often never good enough, and it creates a cycle of seeking that reassurance over, and over again. It's really important to try and trust that the doctors know what they're talking about. I struggle with it too, and recently had to make a deal with myself that I was allowed to ask my doctor one last time about multiple myeloma (my current fear), and if he thought there was no reason to be worried, then I'd have to leave it at that. It's a hard personal challenge, but so far I'm sticking to it!

[Crispyswinger1]

Hey!

Will keep this short as I’m literally lying here after coming out of general anaesthetic which was part of the procedure I’ve had to try to ID a throat problem I’ve been having for 5 months which I’ve convinced myself is larynx cancer.

Before this I saw multiple GPs who all gave mixed answers to what they thought my issue was... this didn’t reassure me.

I then went private to see 3 ENTs who carried out 6 flexible laryngoscopes in their offices and all of which found nothing. I saw three as I thought each previous ENT had missed something for reasons varying from them not looking properly to them not liking me and not doing a proper job (I’ve no idea why I thought the latter as I got on well with all of them, blame the HA and general anxiety for this)

I had ultrasounds which again didn’t reassure me as I again just assumed they didn’t look in the right place at the right time.

Finally the last ENT suggested I go in for a rigid laryngoscopy under general anaesthetic which is why I’m here lying in hospital now post procedure with yet another all clear!

My mind hasn’t had chance to recover yet and find a way to convince me that something has been missed and that I defo have cancer but I’m sure it will :(


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[Caseyg89]

Yeah! I definitely constantly want resassurance.

I guess what I am struggling with, is the fact that I see many members looking for reassurance but once they get it, they move on from that fear. Sure, it may move onto something else, but my anxiety won't even let me move on from my first one.

I think the worst thing i do is google accuracy of tests and convince myself I must be one of the ones it was missed.

[Shadowhawk]

Hi everyone!

I have severe OCD, that over the past 18 months has been cancer focused. It started with a fear of ovarian cancer, followed by colon cancer, pancreatic cancer, esophageal cancer and stomach cancer.

My stomach cancer fear started February of 2017. In this time, I have had 4 endoscopes (all have come back completely clear), a CT enterography (looks at small bowel and all other abdominal organs), a barium study and multiple ultrasounds. I cannot for the life of me, shake this fear.
....

So what I want to know, is this a common feature of health anxiety? Once you get a clear result to research how things get missed and then convince yourself you are one of those cases? I see many people say that once they get the all clear, they just move on to another fear. I am not even moving onto another fear. I worry it was missed.

You bet your bottom dollar it is.

So, i went to the hospital in March worried about my heart. Following up with the Cardio doc that saw me, said everything looked good, noting only mild thickening of my heart wall. Wants me to just work on my blood pressure and go from there.

I felt good for about 10 minutes, until i worried that maybe he was taking it easy on me, and not saying everything since he knew i was anxious. This worry persisted until i went for my 3 month follow up. My first doc was busy, so another came to see me. Looked over my chart and test results, said things looked good overall (didnt mention the thickening), did heis checkup, and let me go for 6 months.

I felt good for about a day, until i focused on my heart rate, etc.. and stayed worried I had now seen two docs, and the hospital, all of whom let me go with just a warning about my BP. But my mind ate at me, and thought that maybe the second doc just brushed me off too. Till this week, when i went in for my colonoscopy (stomach pains)....

I get there and the Doctor Anesthetist says that somebody noted in my chart while i was there, that i had congestive heart failure!!! Well, just just sent me into overdrive, because here is 3 months of fears realized. Thankfully, he sat down with me, and went over everything in my charts with me... It was nothing more than what the first doc said.. mild thickening, but functionally ok. Certainly not failure (as he then went back to my records to note, hoping people would read that first....).

Basically, it took me three docs (and really only the last one did it, because he left no ambiguity, and gave my results exactly as written) to trust that i am still OK at the moment (my HA still fears i am worse off than the reports say - in my mind, ANY abnormality means i am dead, and soon... a very dangerous assumption).

Sadly, it is a hallmark to doubt results, and fear something missed.

[Caseyg89]

Hey!

Will keep this short as I’m literally lying here after coming out of general anaesthetic which was part of the procedure I’ve had to try to ID a throat problem I’ve been having for 5 months which I’ve convinced myself is larynx cancer.

Before this I saw multiple GPs who all gave mixed answers to what they thought my issue was... this didn’t reassure me.

I then went private to see 3 ENTs who carried out 6 flexible laryngoscopes in their offices and all of which found nothing. I saw three as I thought each previous ENT had missed something for reasons varying from them not looking properly to them not liking me and not doing a proper job (I’ve no idea why I thought the latter as I got on well with all of them, blame the HA and general anxiety for this)

I had ultrasounds which again didn’t reassure me as I again just assumed they didn’t look in the right place at the right time.

Finally the last ENT suggested I go in for a rigid laryngoscopy under general anaesthetic which is why I’m here lying in hospital now post procedure with yet another all clear!

My mind hasn’t had chance to recover yet and find a way to convince me that something has been missed and that I defo have cancer but I’m sure it will :(


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This is just the most frusturating thing, isn't it? Like I can rationally recognize that stomach cancer at 28 years old (with 0 family history, no h pylori or risk factors) is like 1 in a million and that number would be even smaller with endoscopes and CT scan/barium swallow missing it.

I am so frustrated by this. I always think the next test will be the one. Even before I went in for the scope, I talked with the GI for like 10 minutes and told her I was worried about this rare type of stomach cancer. She told me she was going to reassure me that i didn't have this. I still doubt!!!

[Crispyswinger1]

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This is just the most frusturating thing, isn't it? Like I can rationally recognize that stomach cancer at 28 years old (with 0 family history, no h pylori or risk factors) is like 1 in a million and that number would be even smaller with endoscopes and CT scan/barium swallow missing it.

I am so frustrated by this. I always think the next test will be the one. Even before I went in for the scope, I talked with the GI for like 10 minutes and told her I was worried about this rare type of stomach cancer. She told me she was going to reassure me that i didn't have this. I still doubt!!!



That’s it!!! I’m the same, I’m 28 with no history of throat cancer in my family and I don’t smoke and have more tests, cameras and scans than some folks will have in a lifetime yet I still doubt what they’re saying when they saying “nothing is wrong”... how can nothing be wrong when I have very real symptoms?!

Anyway, I don’t have any words of wisdom for you as I’m in the EXACT same boat! The reassurance thing is part of the problem though, your mind seeks reassurance, it gets it, you feel better for a while and then you start to doubt.. but your mind knows that reassurance is what it needs so you go around and around and doubt everything anyone says as all you want is further reassurance at this point.

I’ve been this way for about 15 years, I’ve had countless tests for every issue I’ve ever had that hasn’t cleared up in a few months. I feel that anything that lasts more than few months surely isn’t nothing and if It’s nothing then it must be cancer... and then that triggers me again.

Have you seen anyone for therapy yet? I have a few times and it didn’t help but I’m going to see a private therapist this time to see if that helps at all


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[Caseyg89]

You bet your bottom dollar it is.

Sadly, it is a hallmark to doubt results, and fear something missed.
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It is so frustrating. I feel I cannot get a grasp on this HA, because I just doubt everything. As I said to one of the previous posters, I see so many members reassurance seek but it works for that particular ailment.

When I ask my friends without HA, they tell me they would feel so relieved after a scope and never second guess it. They also told me that they wouldn't research accuracy etc.

[Crispyswinger1]

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It is so frustrating. I feel I cannot get a grasp on this HA, because I just doubt everything. As I said to one of the previous posters, I see so many members reassurance seek but it works for that particular ailment.

When I ask my friends without HA, they tell me they would feel so relieved after a scope and never second guess it. They also told me that they wouldn't research accuracy etc.



I think staying away from google is key really... like I felt really happy about my first set of results, did some googling and came across someone who said it took like 6 docs and countless tests before one eventually spotted some rare cancer they had... that didn’t help my HA!


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[HelloPanda23]

Yeah! I definitely constantly want resassurance.

I guess what I am struggling with, is the fact that I see many members looking for reassurance but once they get it, they move on from that fear. Sure, it may move onto something else, but my anxiety won't even let me move on from my first one.

I think the worst thing i do is google accuracy of tests and convince myself I must be one of the ones it was missed.

Same issue here. After knowing for a fact that I don't have a disease, I still don't completely move on from thst fear. It still sticks onto me, and it sucks tbh. Happily though, it barely ever moves onto something else because I never google diseases or any symptoms i may get.

[unsure_about_this]

Yes, yes and yes, I thought I had bowel cancer back in 2012 and 2013 so I had abdominal ultrasound, and the works (camera up the backside) turned out to be either Ibs or common non cancerous pouch.

Testicle ultrasounds because my GP felt a lump, it turned out to be some cysts relating to the epdidymis (I have had two further testicle ultrasounds no changes)
countless blood tests, some due to the condition I have because I have nf.

[Halle0587]

I think it’s also torturous if you have a physical reminder-symptom or visual of the current worry. For me I wasn’t worried about a dark line on my toe back in January. It had been there since November that I knew of, but my ARNp saw it and due to a personal experienced she advised I move my bi-annual dermatology appointment up. After being sent to a podiatrist it ended up being some kind of dried blood from a lifted toe nail that at the end of June is just about grown out. That is what always freaks me out the most when I have a physical mark and especially if a medical profession was concerned and it turns out to be nothing I question it the most, like, are you sure you did the best test for that?

[Crispyswinger1]

I think it’s also torturous if you have a physical reminder-symptom or visual of the current worry. For me I wasn’t worried about a dark line on my toe back in January. It had been there since November that I knew of, but my ARNp saw it and due to a personal experienced she advised I move my bi-annual dermatology appointment up. After being sent to a podiatrist it ended up being some kind of dried blood from a lifted toe nail that at the end of June is just about grown out. That is what always freaks me out the most when I have a physical mark and especially if a medical profession was concerned and it turns out to be nothing I question it the most, like, are you sure you did the best test for that?



I think you’re exactly right! My throat problem atm is a feeling of something stuck on one side on the same area and it’s been this way for 5 months!! Every doc says it’s nothing and every teat is clear yet I’m like... the issue is there, I’m not making it up! Something is causing it so what is it?!


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[pulisa]

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This is just the most frusturating thing, isn't it? Like I can rationally recognize that stomach cancer at 28 years old (with 0 family history, no h pylori or risk factors) is like 1 in a million and that number would be even smaller with endoscopes and CT scan/barium swallow missing it.

I am so frustrated by this. I always think the next test will be the one. Even before I went in for the scope, I talked with the GI for like 10 minutes and told her I was worried about this rare type of stomach cancer. She told me she was going to reassure me that i didn't have this. I still doubt!!!

Casey, are you still having intensive therapy for HA? Surely your therapist is not happy with your doctors enabling your HA by giving you test after test and therefore working against any psychological work you will be doing?

[Caseyg89]

Casey, are you still having intensive therapy for HA? Surely your therapist is not happy with your doctors enabling your HA by giving you test after test and therefore working against any psychological work you will be doing?


Hi Pulisa!

Hope everything is well with you. I am glad you commented as you always have a rational hat!

I have received intensive therapy through a social worker and a psychologist. I also have a psychiatrist that I work with too.

I want to know what is causing my symptoms as they impact my daily functioning. The doctors aren't sure... and my mind jumps to cancer.

[pulisa]

Casey, you believe you have had stomach cancer for the last 16 months. Your GI doctor has helped to keep this belief going by agreeing to give you test after test despite you having no red flag symptoms and despite you giving birth and still being alive with no weight loss and no radical deterioration due to invasive malignancy.

You have a lot of psychiatric and psychological support but therapy obviously makes no impact on your anxiety regarding symptoms. What does your psychiatrist say about your involvement with the GI doctor? Does he/she sanction this?

[jray23]

Yes this happens a lot with health anxiety. Been there done that myself. Our issue is that we want 100% assurance that nothing is (or will be) wrong with our health. But in many cases 100% is impossible.

We need to be willing to accept 99.99% assurance. Compare it to going for a drive, there is no 100% assurance of our safety but we do it anyway every day without a second thought.

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