Possibly cancer but GP won't listen

[morethanyouagain]

I have seen 2 male GPs

One was quite rude to me today

History: Dad had bowel cancer age 33. He has Lynch syndrome. Mum's identical twin had ovarian cancer age 49. Uncle had stomach cancer and bowel cancer age 40.

I am 26. For the last 8 weeks or so, I have had bloating that doesn't go down and seems to be getting worse. I had my neighbour politely ask if I was expecting yesterday. Which pushed me to speak to the GP again

I've had pelvic pain for a few weeks alongside the bloating. However, not really weeing more or losing weight etc

GP said because I am not weeing more or losing weight, that's a good sign. And he prescribed me Omoprazole. I said I don't think it's gastric. He said why not? I said because the bloating is getting worse and there's pelvic pain

He said to come back in 2 weeks if things haven't got better with Omoprazole

Should I just book another appointment and ask for a scan? I requested a CA125 blood test but the GP said I don't meet the criteria. Yet, when I look it up, it says I do

He replied to this 'Don't trust Google'

I just feel a bit worried - Not so much that it's 'omg cancer'. But because if it is that, I am going to have to go around the houses before anyone listens

Yes, more likely cysts or something equally benign. But it's a concern.

I have a DC to care for. I can't play games with my life like this

Picture is of my swollen stomach laying down

GP said he can't see anything. Sorry, but even in this badly lit photograph I can see?

OP, could you write a letter to the GP, or better still e-mail if possible.
State your symptoms again and ask that if he will not refer you for an NHS scan, would he please refer you privately?
I found that the only way to get diagnosed and then treatment (not cancer. something else) was to make sure that my request was 'documented' in my notes. He sent me for the scan.

I had horrific bloating that came out of nowhere, alongside pelvic pain. I looked 8 months pregnant.
GPs didn't care. They did the CA125 test and it was higher than should be but with a long history of endo, they wrote it off as this
I ended up paying for a private consult (180) who told me I had to lose weight. I was 9st but looked much heavier and when I insisted he weighed .me to prove i wasn't lying, he was very apologetic. Referred me for ultrasound which was another 7 weeks.
Apart from a large cyst that was historical, there was no reason to explain
Turns out that alongside all my other autoimmune issues, my body decided at the age of 37 that i had Coeliac disease. I'd barely eaten during all the bloating but what I was eating was small amounts of dry toast etc .
When you're waiting for GP, maybe look into doing the FODMAP diet in the interim. They'll suggest it anyway so you may save some time of you do it now. If nothing changes, you can tell GP you've already done it and they can move onto next treatment. If it works, you'll feel miles better
You have to do so much for yourself now. It's so shit

Have to say when I had similar symptoms and was straight away referred for pelvic scan and bloodS but not on the two week pathway. All clear and put down to stress and menopause. I think you are being robbed off because of your age. If it helps I’m told the CA125 test isn’t seen as reliable marker these days but you need to get to the bottom of this with your family history. Hope you are ok OP and can push for what you need to happen.

Sorry to hear you are going through this OP. Your clearly high risk with such a history of cancer at a young age in your family, and I'm amazed it isn't being focused on more, or that the GP at least understands why you're deeply concerned about keeping monitoring it. If there's any chance of private scans etc I'd do it. I'm also surprised he said he couldn't see anything wrong with the photo. It's obvious there's serious bloating indicative of malfunction of some kind.

As other posters have said, he might be trying to tackle the first and most obvious cause right now, but it doesn't seem to be the right one. Make sure when you go back you keep pushing (I'm sure you will).

The reality is though that a lot of GPs don’t take patients seriously. I went to my GP on several occasions in a short space of time, giving very specific symptoms, and I was fobbed off every time with being run down and told to buy pepsol. Eventually he did a ferritin test and I had the lowest reading and he told me to buy a tonic. I gave up with him and went to A&E. They admitted me that night, and after in-patient tests I was diagnosed with bowel cancer. My opinion of that GP is unprintable.

Another GP laughed (really) when my son was suffering bad depression and dismissed it as a teenage thing. Effing bastard I still haven’t forgiven him. (Son has since had counselling but he is still vulnerable to a repeat episode, we won’t be going back to that excuse of a dr).

Yes there are good GPs but you feel like you have won the lottery if you find one.

99% of the GPs I know are good and caring people trying to do the best they can with not enough staff, not enough funding and an overwhelmed NHS. And being one myself, I know quite a few.

OP I would go back and spell out your concerns ‘ I have some of the symptoms of ovarian cancer and I’m worried because of my family history of Lynch syndrome. I’d like a CA125 and either an ultrasound or a referral’.

I am frequently referring people for ultrasound scans that end up rejected by radiology because x, y and z haven’t been tried or ‘it’s not been long enough’.

It is not unreasonable to try some form of treatment and give it a bit of time as most things self resolve. I might have plumped for some IBS meds rather than omeprazole but depends on the history.

I know you should have too but you can get a private ultrasound for around £150. I recently got told by NHS gynaecology that I may have cancer and was booked in for open surgery for hysterectomy, I was told my uterus was so enlarged that I needed surgery within 4 weeks. I felt they were wrong so I booked a private scan which showed my uterus was normal size and I got my surgery changed to keyhole and managed to keep my ovaries, if I hadn’t of paid for the scan I would have had a radical hysterectomy by open surgery. I also got the all clear for cancer last week. I needed the surgery anyway but it could have been a much longer recovery and being plunged into menopause.

Anyway, my point is £150 for a scan is a small price to pay to put your mind at rest. It’s unlikely you have cancer but of course it’s not impossible.

It is not unreasonable to try some form of treatment and give it a bit of time as most things self resolve. I might have plumped for some IBS meds rather than omeprazole but depends on the history.

Actually, with ovarian cancer, it’s completely unreasonable. It’s called a silent killer for a reason. When symptoms manifest, every day counts and ‘wait and see’ costs lives.

Sadly my mother’s doctor had the same view as you and this is why I lost her when she was 48. As confirmed later by a renowned gynae oncology consultant.

Oh for goodness sake if it’s ovarian cancer IBS meds won’t make the blindest bit of difference and the patient should be safety netted to return.

Whilst you are waiting for bloods etc it is reasonable to try something for a very common condition that on balance the patient is more likely to have.

Sure, my mother’s bloating and acid reflux also got better temporarily when she was fobbed off with a prescription. 6 months later she was diagnosed with OC and told it had spread. 🙄

Have you heard about masking? When symptoms like bloating and acid reflux get better for a while thanks to medication that treats these symptoms but the cancer continues to grow?

I assumed you knew that ovarian cancer causes bloating and abdominal discomfort by causing obstruction, trapped air, irritating the lining of the walls and the peritoneum. And these can be sometimes temporarily alleviated with specific treatment. And the placebo effect.

If a patient presents with a compelling family history and symptoms, the most serious underlying cause should be ruled out first. Nevermind what the current guidance says, this is the clinically and ethically right thing to do.

Prescribing symptom-specific medication that leads to temporary improvement while the cancer keeps growing is exactly why people die.

When I presented with symptoms similar to OP’s and my family history, I had CA125 tests done the same day and an ultrasound a week later. Turned out to be post-operative but I’m grateful I wasn’t patronised and sent home with a prescription to ‘wait and see’.

Go back to GP. Tell them you have a 50% chance of Lunch syndrome and a greatly increased risk of bowel, endometrial and ovarian cancer. Refuse to leave without an urgent referral to investigate your symptoms.

You also need a referral to your local clinical genetics service - they can advise on and refer you for none urgent regular screening.

If your gp tries to fob you off Google your local genetics service and ask to speak to the on call team as your GP is refusing to refer you despite symptoms when you have a family history of Lynch.

Persistence will pay off. Keep going back and eventually you'll get a referral.

It’s not at all reasonable to wait two weeks.
OP has objective abdominal swelling now. She needs investigated. Ca125 and ultrasound
I wouldn’t do a private Ca125 blood test, they are indicative, but not diagnostic.
The OPs abdomen could be swollen because of non malignant issues - eg a huge fibroid. But no one, including the GP, can say that without investigation
GPs don’t think about ovarian cancer. I complained to the Royal College of GPs when I wa diagnosed- because when I graduated (30 years ago) ovarian cancer was a late diagnosis. The fact it’s still a late diagnosis in 2024 is utterly pathetic
The Royal College didn’t appear to care. They replied along the lines that they educate GPs about abdominal distension and ovarian cancer.
By the time women have abdominal distension we are well down the line with this cancer.
I hate the fact that this is still diagnosed so late. It’s a failure of medicine. Ca125 should be checked more often in women with non specific symptoms.
They don’t check it because it can cause unnecessary anxiety. But we go for mammograms and smears, and in Scotland we put in poo samples for bowel cancer. All of the causes me anxiety!

Go back to your GP, OP. Don’t ask their opinion. Just state that you want the blood test and an ultrasound. If they refuse then ask them to document that in the notes and immediately complain in writing. Drs are afraid of litigation

GPs have a difficult job. But they aren’t magicians - they can’t tell by looking at us what is wrong. When my Ca125 came back at 1072 (normal range 0-35), my GP was lost for words. ‘It doesn’t present like that’ is what he said. I should have said ‘well something has’

You know your own body. Follow your instinct

I had a LOT if bloating when I was 23. Turned out to be a big ovarian cyst and stage 3 endometriosis. Had a couple of surgeries and other treatments over time and hasn’t been too bad to manage.

My GP was dismissive originally and it was actually picked up at the sexual health clinic, I think they are used to listening to patients and are more open minded.

My GP has been rather fantastic and has really tried to help BUT every time they refer me for a repeat intra-vaginal scan, it gets refused by the hospital team. The reason? They said the one (and only) I had a month or so again was 'normal' — yet the actual report says that the ovaries were obscured by 'bowel gas', so it can't obviously be deemed 'normal'.

Having lost both my cousin and my aunt to ovarian cancer, I am concerned and would really just like to get someone to be able to look at and give me the all-clear on my ovaries.

Feel completely at a loss as to what to do next. (I have a lot of symptoms that match ovarian cancer, but am aware that this may be coincidence.)

Our cancer rates are shocking the system is broken.