To tell GP he missed my cancer?

[GoodbyeRubyTuesday]

I'll try to be as brief as possible, and to avoid being too graphic!

I started having bowel problems about three years ago, aged about 19. I mentioned it every time I saw my GP and repeatedly asked about any tests they could do to see what was causing it. My aunt is coeliac so I was concerned it was that. Eventually about a year after my first complaint, I had a coeliac test, which was negative, but symptoms were worsening. I decided to try a gluten free diet anyway and symptoms seemed to improve. GP said if I had two negative coeliac results it would be "unusual" so he might contact a gastroenterologist about it (not refer me, just ask them), so asked me to reintroduce gluten. He then refused me the test as I'd already had a negative one.

In April last year I started having some blood when I went to the loo. It was relatively bright red. I mentioned it to the doctor who told me it was piles and that he "could do an examination but I'd need to get a chaperone and it would be a lot of hassle and take a lot of our time" so I agreed not to have an examination, more fool me. The blood seemed to have stopped after a while.

I then moved home and changed GP, my symptoms worsened and to cut a long story a little shorter I was diagnosed with stage three bowel cancer and FAP.

If he had just done an examination he would have found that I had no piles and could have referred me sooner so it might have been caught at an earlier stage.

To confuse matters I'm now back at the surgery with the GP who missed the cancer, but have avoided seeing him.

Some people have suggested I ought to let him, or the practice manager, know that he missed the diagnosis. I am not angry or trying to make him feel guilty, but if I warn him then he will avoid making the same mistakes in future. However, it is unlikely he will ever see another case of FAP with no family history as it is a rare condition, and also unlikely to see another university student with bowel cancer, so it might come across as being vengeful or malicious.

What do you think?

Cider - I'm exactly the same. Diagnosed with IBS duringUniversityafter my great GP referred me to hospital for camera and tests which came back negative. But many years have passed and since then my Nan has passed away from bowel cancer and my Mum had her bowel removed. My "IBS" has been playing up majorly recently so I'm going to push for some investigations.

Sorry to hijack OP but this is something very close to my heart and worries me all the time.

Oh GoodbyeRubyTuesday you have my sympathy.

Your post has struck a chord with me (to use a handy cliché) as I had a similar story of stage 3 bowel cancer. I went to my GP with bleeding and tenesmus (sorry if TMI) and was told that the bleeding might or might not be piles. Because of a family history of bowel cancer I was given a non-urgent referral to see a specialist who didn't examine me but fortunately referred me for a colonoscopy where the doctor saw the tumour - five months after I had first gone to the GP. Had I not pushed my oncology consultant I would still have had to wait ten weeks to get treatment. (She organised chemo for me approx. six weeks after my diagnosis).

The GP who I saw phoned me to say how shocked she and the consultant were by the cancer! I am not such a rarity as you as I was 42 when I first went to my GP (and I don't have FAP), but my 60+ mum's bowel cancer was misdiagnosed by her GP too. As was my friend's mum's bowel cancer. Both these older ladies' cancers were only found when they had got to stage 4. The consultant thought I probably had IB. I heard a similar story from a fellow patient in hospital; it seems this is a very common occurrence - so frustrating when the govt health campaigns advise early investigations (for obvious reasons).

I assume the difficulty for the GPs is that they have to refer to consultant on the basis of statistical probability. But not to examine you..

I didn't want to see the GP again, especially after her phone call and she moved somewhere else anyway.

Apparently more and more young people are presenting with bowel cancer. I do wonder if GPs are aware of that.

I'm sorry that doesn't answer your question. FAP is rare as you probably know.

How are you doing?

My old gp years ago fobbed me off and misdiagnosed my daughter. She nearly died because of his negligence. I went back and told him. He apologised but couldn't look me in the eye. If it has in anyway stopped him being so flippant with anyone else since then it was worth it.
Do it for that reason and for yourself, I think it's part of a process to have that conversation.

You should complain.

My first husband and my friend both died after being fobbed off by GPs who failed to spot that they had cancer.

Slightly unrelated to the OP, but IBS is a diagnosis of exclusion, ie they've ruled out anything more serious. You shouldn't be diagnosed with IBS without having had tests done (colonoscopy, blood tests etc).

And the following are red flags that indicate something more serious than IBS going on:
Blood in the stool (that is not bright red surface blood, which can come from piles or tears, however you should be examined to see if there is an obvious cause for the blood)
Diarrhoea occurring repeatedly at night
Unintentional weight loss

But OP, YANBU. What is the point of having these awareness ads on TV etc (blood in your poo? Tell your doctor) if the doctor then just dismisses you! And I have had many examinations down there, getting a chaperone is never a problem.

I think you should definitely tell the GP. Hopefully it may help another patient in future. Two of my friends were fobbed off by GPs for several years, both young people, one of whom was eventually diagnosed with stage 3 Hodgkins lymphoma, and the other who unfortunately died from adrenal cancer. Both were told their chances would have been greatly improved with earlier intervention.

I hope you are well recovered now.

I would write to the practice manager. I don't see it as being vengeful. It really sounds like he made a mistake and, at the very least, should learn from it. I would worry about his general attitude to patients - I doubt it would be the first time he's missed something important.
I feel you owe it to other patients to report back to the practice manager.

You need to inform the surgery - if he's putting people off investigating serious symptoms further than that is dangerous and it may be a recurring issue with him.

When I was younger I was misdiagnosed with tonsilitis by a GP and nearly died as a consequence - the surgery were fantastic afterwards, even though it was an easy mistake to make and made sure that all the GPs knew key differences to look for in borderline cases

Ruby so sorry to hear this. I hope you are ok. I would definitely tell the GP. I'm not a doctor but I know that blood in the poo is mostly not serious but must be checked out. At the very least, he should have prescribed something for piles and then told you to come back if the bleeding didn't stop. He was lazy and it's important that he learns that you suffered the consequences of his negligence.

Good luck. In my experience doctors are seldom able to admit their mistakes, but at least you will have done your bit.

There seems to be this idea amongst GPs that if you are under the age 30 then you wont get cancer, fact.

Except that it isnt a fact. I know of someone this happened to as well, it was breast cancer and she ended up having to have far more radical treatment as a result than if she had been referred 2 years earlier when she first found the lump. She was told by her GP that "26 year olds do not get BC", told her it was hormonal and didnt refer her to the breast clinic.

She made a formal complaint because she wanted to send a message not just to him but to other GPs, as it seems to be a common problem. An informal complaint will only reach him, but a formal one will be more far reaching.

Speak to the GP? OP you have been treated appallingly, you should be seeing a solicitor and making a formal complaint against this GP. In my view he should be struck off but there does need to be proper action taken to ensure he does not behave in this way to any other patients.

It's also worth remembering that Ovarian cancer is also often misdiagnosed as IBS.

Funnily enough my "IBS" has flared up again recently, however this time I'm suffering with severe bloating and general discomfort, rather than the usual running back and to to the the bog. Before I'd have just accepted it as part of the condition but now I think I should go and get it checked out.

Any decent GP would want to know, they have to take any "critical incidents" to a practice meeting and to their annual appraisal (and in future to their re-validation meeting).

Not examining you is very wrong, especially as he tried to put you off. I'm sure no GP really likes doing a rectal examination, but it's part of the job!

This is shocking and I agree with others, you should formally complain.

I got piles in my mid 20s, went to the doctor, told him I was bleeding from my bum and said I knew it was piles. I was keen to avoid an examination but he insisted, called in a female nurse and it was done and dusted in minutes. So what was your doctor on about?

I would write to the practice manager

I'd do this - as it lets them know and it's in writing so harder to ignore.

While it was unlikely/unlucky to be cancer at such an age once symptoms develop it that completely changes and symptoms shouldn't be dismissed.

To not not investigating at all is very worrying.

If you mentioned this many times to your GP then it is obvious you were worried so the GP should have taken it more seriously.
I bet he would have had you been quite a lot older! I think doctors tend to think it is unlikely to be serious at your young age unless your symptoms are so extreme they cannot be ignored.
Statistically it would have been more likely to be piles and IBS at your age rather than cancer.

I think I would want to mention it to the GP if it were me- Not to have a go at him but to express to him that I was concerned that it never happens to anyone else!

Hi everyone sorry to disappear, I had to go to a workshop I'd forgotten about.

FAP is Familial Adenomatous Polyposis. Basically hundreds of polyps throughout the GI tract. They will become cancerous early on. It is genetic so most people are identified through their parents and have surgery before it becomes cancerous. It causes various other issues too.

Brandybuck did your mum have multiple polyps? It's normal for people to have one or two as they get older, forties onwards usually, but there are several conditions that cause polyposis, I'm no expert but I don't think your mum could've had FAP as it usually turns cancerous in early twenties. However she may have a 'milder' version or a different condition. Did she have any genetic testing? If so, you should have been tested too to rule out the same condition.

My blood was bright red as my tumour was in my sigmoid colon, not far from the bottom. So although bright red blood is generally a symptom of piles or a tear, it still needs to be checked out. I'm now rather an unwilling bowel expert!

My sympathies to everyone who has been through similar experiences, or suffers other bowel issues. The more stories I hear about people's cancer or other serious illnesses being missed, the more determined I am to notify them about this so that at least one doctor, and probably his colleagues too, will be more careful in future.

I wouldn't have expected him to refer me before as my symptoms were fairly mild, it was only after the bleeding if he had examined me and found I don't have piles then I assume he would have needed to refer me then, and I would have requested it.

My treatment would've been similar whether they'd found the cancer earlier or not, although I might've avoided chemo. I've had my whole colon and rectum removed.

Thank you to everyone for posting. I will read through again and decide exactly how to approach things. I don't think I can cope with seeing him face to face. I am not good at being assertive, although I'm getting better, and I hate making people uncomfortable so I would really struggle to say anything.

I'm sorry to have worried anyone. I am 22 and if you are over 30 it is highly unlikely you would have FAP and not have had any indication. It is also incredibly rare to be the first person in your family to have it. But if you have any unexplained bowel symptoms it's really best to get them checked out.

I hope I've answered everyone's questions! :) thank you all so much. I was worried about posting in AIBU for the first time but it's really helped to have so many different opinions.

Sorry you've had this experience, Ruby, and I hope you are doing well now.

I just want to say thank you for this thread. I'm 19, and since the age of 14 I've been told that I have IBS. I was never examined or tested for anything - just described my symptoms, and told I had IBS. From then on, any bowel-related symptom I've had has been IBS - blood, cramps, tearing pain, severe bloating. I don't have the diarrhoea that most people with IBS seem to have, nor do I have particularly bad constipation, and yet the GP is happy to just say "IBS".

They haven't even considered the possibility of adhesions, because I had massive abdominal surgery as a child. I'm certain that adhesions are the cause of this pain, as the surgery I had is notorious for causing it, but I'm going to press the GP to investigate this further. Unexplained bowel problems run in my family. I've no doubt I'll get the usual "people under __ don't get cancer", but after reading this thread I'm going to keep pushing until they actually check.

Worth remembering that the incidence of bowel cancer in young people has increased by about 70% since the early 1990's. (I was also one of them although I am Lynch rather than FAP.) I had a very similar experience with my GP - I despair at the money that is wasted on awareness campaigns for cancer - in my experience it's the bloody useless GP's who need educating, not the patients!

Please make sure you get the appropriate follow-up now that you have been diagnosed with cancer and a genetic condition. The NHS won't want to do it properly because it costs money, but you should be referred to the nearest genetics clinic for testing and counselling and regularly checked for any cancers that are more common in people with FAP.

I also have CEA blood tests every 6 months (should reveal early tumours) annual colonoscopies and for the first 2 years after diagnosis I had CT scans every 6 months and then annually for another 3 years. I also have annual hysteroscopies and CA125 tests for ovarian cancer.

At the very least, you should tell the GP so he doesn't make the same mistake again. He will (or should!) be sh*tting himself over this so make sure you use that to your advantage when trying to get properly followed up.

It's always worth getting a private health policy if possible, just to cover referrals, so that GP's like this can simply be bypassed - they are usually more than happy to refer privately.

Hope you make a good recovery

Mine was missed for over 7 months. I kept going back and back and being told it was IBS. Didn't help that we moved house in the middle and had to start again with a new surgery. They only referred me in the end to get rid of me, having put in my notes something like "patient thinks it's cancer but we don't".

Both my regular GP and the senior GP I'd seen in an emergency just before being referred apologised for missing the cancer. My own GP rang me the day I came out of hospital following surgery. Medical staff afterwards told me I could have sued them, but I couldn't see the point really. Mine was stage 3 by the time I had surgery, so I had to have chemo as well.

So yes, in answer to your OP I would tell him that he missed it, and probably put in a complaint to the practice manager.

younggirl my team have been fantastic. I really cannot fault the NHS, apart from this one GP. I had my sigmodoscopy on Saturday and then by the end of the week I had had a CT scan, blood tests, been discussed at the MDT meeting and given my diagnosis. I had surgery within two weeks of diagnosis. I've seen the geneticist which is how I got the definite diagnosis of FAP and I've had a follow up CT (all clear) this month. I will have annual CT scans as well as blood tests and endoscopies to check for the other polyps/cancers. But thank you :)

moomin I hope you can get some answers. IBS does seem to vary an awful lot in its symptoms. The blood really ought to be checked out though.

Also someone earlier, can't remember who sorry, asked if a blood test can show cancer. It can't say for definite whether you have cancer or not but there are tumour markers (CEA and CA19-9 for colorectal cancers) which can indicate the presence of a tumour, amongst various other conditions. They are used alongside other screening methods.

I admire your ability not to be angry. I would be very angry. Even allowing for the fact that what you have is extremely rare, GPs should carry out the necessary tests to work out what is wrong. And you had a long history of bowel problems - that should have alerted him.

Personally I think you should write to the practice manager, because this gives everyone an opportunity to learn from this person's mistakes. The trouble is, even if you don't phrase it as a complaint, they will treat it as a complaint, will assume you're going to sue and probably write a reply covering their backs. But that's up to them.

Telling him is the kind thing. I'd probably lodge a formal compalint

OP I also admire hugely your ability to not be angry and to be so even-handed about it. If it were me, I like to think I'd book an appointment with the GP, outline your history and then tell him what happened.

I'd then say I was not going to complain but that I wanted him to promise to have a look at his own practice so that no other patient of his has to go through something similar.

I would like to think that any responsible professional would really take that to heart and would be grateful you hadn't complained formally. But I would totally understand if you did complain in writing.