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?

I too have Lynch syndrome in the family. I’m a lot older than you but still have regular (yearly) checks at the insistence of the Genetics team.

If you have not already been seen by your local genetics team, ask for a referral (this should have been done when your dad was diagnosed). If you are already on their radar, ask them to intervene on your behalf (the genetics team I am under have arranged various procedures in my behalf and no-one quibbles with their advice)

You are right to be concerned if your GP practice continues to be unhelpful and if you can afford it, arrange to be seen privately.

@GettingAwayFromYou

"99% of GPs are dreadful people"

Don't be ridiculous

I think you definitely need to change your doctor - I’ve had doctors like that over the years and been dismissed, particularly in my 20’s and early 30’s. It’s amazing how when you hit 40 suddenly you’re allowed to be ill!

When I was your age I had recurrent kidney infections which resulted in 6 months of antibiotics. Following that my stomach started swelling like a balloon - endoscopy found nothing so I was just put on Omeprazole long term. After a year or two my bones felt creaky and I read it has bad effects on joints so I took myself off it. The swollen tummy returned and I got a hernia. Years later I got a fantastic gastroenterologist who spent a huge amount of time on it - various tests, a capsule endoscopy which showed mild gastritis and quick digestion but never found the cause. He said that it’s an area that they don’t know everything yet, new things about the gut are constantly being found so as of yet there is no diagnosis for my stomach issues but that might change in the future. He said Omeprazole is a hard core drug so should not be used long term like that and tried me on some good probiotics which have improved my stomach and reduced the swelling.

I didn’t have a family history like yours but even the dismissive doctors ordered things like ultrasounds. Personally I would change doctors asap (or tell the clinic you want a female doctor so you don’t have to argue about his treatment - many women only want female doctors). If you can afford it maybe get a private ultrasound and private bloods. I’ve used Blue Horizon before and found them good - think it’s £59 for just that test or you can get it as part of a larger package of tests.

Ca125 is not really used for diagnostic purposes as it can be raised in different scenarios - but a scan is the best way to see what’s going on. I also didn’t lose weight - I had two massive benign huge tumours on my ovaries. I am fat so couldn’t see bloating.but I felt bloated, tired and the leg pain from pushing on nerve.

request a scan, see a different gp, so private if you can.

you should have follow up for lynch - important to check not bowel issue (don’t assume ovaries)

Yes good point - are you having regular colonoscopies OP? You should be if you haven't tested negative.

This is spot on. You should have been offered a genetics test and managed through the genetics team for annual screening.
Even with a negative genetics test, the genetics team may still be able to help you with counselling etc. Sorry you’re going through this.

99% of the ones I’ve seen have been. If I’d left my welfare to my GP I’d be dead now. I’ve noticed the young junior GPs are far more involved and engaged with their patients but once they get to that middle aged range they follow a script. You’re probably run down, you’re probably this, you’re probably that (‘probably’ shouldn’t be allowed in their vocab).

Thankfully I don’t go to the GP often but if I did I already know what they’re going to say.

At least since being diagnosed with Lynch Syndrome (and having had cancer) they do listen more.

I have Lynch Syndrome. I had bowel cancer so focus mustn’t just be on ovarian.

If she does have Lynch Syndrome she really should have a colonoscopy as well. I’d probably prioritise that. I was convinced my pain was gynae but it wasn’t it was bowel.

I’m a doctor. In the context of your family history this should be taken seriously. I would contact the practice manager, ask for a further consultation with one of the partners. You need C125 and an ultrasound scan first. They also need to refer you for genetic screening.

If these are normal you should then have a colonoscopy

Agree! They got consumed too, which means the system is not effective & not enabling GPs to be able to help people.

OP, if your dad has Lynch, have you had a test to find out if you have it? If not, see another GP and ask for referral to your local genetics hub.
You also have other family history, and they should be listening to you.
I hope you get some decent care from another GP, and ultrasound and bloods would be a start, but you definitely need a referral to genetics as an ongoing issue.

https://eveappeal.org.uk/inherited-risks/lynch-syndrome/

@GettingAwayFromYou vile disgusting post, that brings me closer to quitting my job as a GP. Of course there are some GPs who aren’t good, but saying that 99% of them are dreadful people is extremely offensive.

Apologies, didn’t see this before I posted.🙂

Ask for referral to gynaecologist - may be ovarian cyst - it was for my friend in her twenties.

From her picture, for her GP say can’t see anything is borderline gaslighting, at best incompetent!

It annoys me when gps say don't trust dr Google, but then other times they suggest we use Google to look up ways to treat some things. When I say anything to my gp that involves Google I tell them it's from the nhs website. This is the nhs websites info on ovarian cancer symptoms, along with the bloating do you have any of the others?
https://www.nhs.uk/conditions/ovarian-cancer/symptoms/

I went to my gp as I was having ovary pain during sex, and in between, and she did a through examination, inc internal, and a ca125 blood test and put me on the two week pathway. It wasn't cancer, and the pains went so for me it might have been a cyst. I've had a hysterectomy now and they didn't say there was anything there, and the cytology came back all clear.

I hope you have some more success with your gp, either the previous one or another one.

A one-off CA125 test alone isn’t a reliable way of determining ovarian cancer (OC). It can be elevated due to non cancerous conditions and also stay within range even if something sinister is going on. It’s best used to monitor levels in in women with confirmed OC post-op to see if it’s returning.

I know this from spending almost 20 years on ‘cancer watch’ due to family history of OC.

If you can afford it, a private ultrasound and a CA125 test together might be better. Plus, a lower abdominal ultrasound will not be restricted to ovaries and will likely show any masses in that area, in case there is something else going on.

Sorry you’ve been fobbed off, especially considering your family history. Seems it’s a lottery. My GP referred me for surgery to reduce risk of ovarian cancer (also family history and I’m in my 40s now) but I gave them a letter from a private consultant recommending it so they couldn’t really argue. And monitored myself for almost 20 years (privately).

Your GP sounds unhelpful. Ask them to show you the guidance if they say you don’t qualify for a test. I think you do.

Seems paying for private tests first is the way to start the process these days, how sad.

CA 125, according to my consultant, isn’t reliable in diagnosing the cancer as it can be high from other things naturally (ie mine is almost 100 due to fibroids). Its better at seeing if OC has returned post-op.

Its still worth while requesting as if it’s high, they’ll do further and urgent investigations

@rumnraisins oops, crossed post re CA125

@morethanyouagain I had an almost 6kg ovarian cyst that turned out to be very rare mucinous ovarian cancer. I think there are only about 700 cases diagnosed worldwide annually and it’s treatment resistant. It was caught at stage 1a and my CA125 was about 50. No one was expecting cancer to be found as there weren’t any of the usual indications and the barely above normal CA125 was considered to be something else causing inflammation. It was a huge shock when I received the results 2 weeks after the massive surgery I had to remove the cyst and anything else that I could go without just as a precaution.

Keep pushing for a referral but please don’t buy any at home tests to do as it will only make your anxiety worse.

Have you been tested for Lynch Syndrome? I have it, diagnosed after endometrial cancer at 48. I've passed the gene onto my own DD who is 26. A lot of GPs don't know about Lynch in my experience. I had to give my GP some paperwork about it from the genetic team. With your family history you should definitely push to be tested as well as ask for a second opinion for your current issue. There's a really good Facebook group for Lynchies with lots of advice. I hope you get some answers soon OP.

OP might have chosen not to get tested yet, I didn't until I'd completed my family.

It annoys me when gps say don't trust dr Google

And then prescribe an upper GI tract drug for swelling in the lower GI tract/gynae area.