Initial symptoms of pancreatic cancer, GP fobbing off

[swingsandround]

Just wondered if anyone has experiences of this aggressive cancer. DH has a number of symptoms consistent with possible pancreatic cancer but the GP seems to be fobbing him off. But I've read of other cases of people who's diagnosis was delayed in a similar way because the symptoms seem like something else. Just trying to gather evidence for persuading the GP to test for it really.

Hi, my friend had it. Pain in her stomach and pale poo.

She was in her 50s. Another two people I know had it, in their 60s.

My husband had bile duct cancer and was initially fobbed off by the GP. Happy to help by pm if you like?

My brother died of this, developed painless jaundice (went yellow) then got swelling in his abdomen.
Hope your OH is ok and it's not pancreatic cancer, it's a grim disease

After my mil was fobbed off by her gp as having IBS for a whole year when in fact she had a small bowl cancer and passed away as a result, I take no chances now. I have gut issues and in particular upper issues earlier this year. I couldn’t afford it but paid privately for a scan as I was so concerned (I stuck it on my credit card). Most private baby scan places also will offer health scans. I used Ultrasound direct, they have centres in many towns and it was £100. They were really professional and that £100 was money well spent imo. I hope your dh gets some answers soon op.

bowel

DM was back and forth to the GP for years, with pale stool and pain, and fobbed off with "it's IBS". Then diagnosed with diabetes, lost half her body weight and looked grey. Diabetes nurse only commented that she must be sticking to her diet well!
Only finally discovered the cancer after jaundice set in (as the tumour was blocking her bile duct) and an abdominal scan. Stage 4 and after a stent was put in her bile duct she survived another 6 months.
Bastard disease 😪

I'm so so sorry to hear of your losses. Just awful. So DH doesn't have pale poo or jaundice but nausea, stomach pain, constant fatigue/malaise, weight loss, intermittent diarrhoea, loss of appetite. To be honest it's the sense of malaise/something is wrong that I keep reading about in pancreatic cancer stories and that is the most worrying to me.

That's good to know about the private scans, thank you. So sorry for your DM

*MIL

Have you politely requested/almost demanded a referral? Spoken to the Practice Manager.

Has your DH said to the GP directly he is concerned it may be pancreatic cancer and asked for this to be investigated? I have found when doctors are asked to state that they are certain it is not xyz they will then proceed to check. I have had to be very assertive about something once and was proven right (not cancer).

Can you go to a different GP in the same practice?

My friend died of this, she had very vague symptoms, pain in her abdomen and radiating through to her back, nausea, tiredness.
later on, pale stools and jaundice.
This was all in the space of a couple of months.
Nothing seemed to be bad enough to go to the Drs initially and when she did, he thought she might have gall stones.
He sent her for bloods, an ultrasound scan and referral to gastro team at the hospital.
They diagnosed her very quickly but there was nothing they could do for her other than fit a stent and sort out her pain and nausea.
She was given a prognosis of 3-6 months but only lasted 2 months.
This gave her time to sort out her affairs, she was too unwell to go anywhere or do anything.
I hope your husband’s GP takes your concerns seriously, I would pester him. My friend had her blood results back first and had raised tumour markers and that was the first indication that things were not good.
Good luck xx

My mum had pain in the middle of her chest. She knew it was possible pancreatic cancer from the start (she lost an aunt to it) so tests and a scan were done but no diagnosis. She was prescribed Tramodol which kept the pain at bay but eventually just meant that she was sleeping a lot. Diagnosis was only made when I insisted her GP refer her to A&E NOW. He did, where she was examined, admitted and they found the pancreatic cancer on an MRI a few days later. Later symptoms were jaundice and weight loss. It was terminal at diagnosis. I have learned several times in my lifetime that you really have to assert yourself with some GPs… good luck, OP.

My friend only really had stomach pains, doctors thought it was a possible hernia or ulcer. He was fobbed off with one result or another but kept pushing. Finally got a diagnosis of pancreatic cancer, stage 4. He passed away 4 months later. With hindsight...If you're not happy, don't settle. Pay private if you have to. Sorry to sound blunt but pancreatic is probably one of the worst cancers there is for survival rates, it can be devastating.

I had ampullary cancer - where duct from pancreas & bile duct meet before going into duodenum. I had symptoms similar to those you describe, my urine also went a very dark brown colour. My GP tried to fob it off as dehydration 🙄. I insisted on a liver function blood test which showed my liver enzyme levels were sky high & as soon as he got the results he phoned me & told me to go to A&E. I hadn't started to go yellow by then but did a few days after. Tumour was removed, fortunately before it got the chance to spread.

All scary, horrible stories. Thank you for your encouragement, no he hasn't mentioned it specifically but that's a good idea

If you can raise £250-£300 that will pay for a private consultation with a gastro consultant. If you do some googling for private hospitals near you, Spire, BUPA etc, there will be a list of consultants and specialities. You will probably find that their gastro consultant also works for the NHS in your area.

If there is any concern that it might be cancer then consultants can get you into the NHS systems pretty quickly.

I paid for my DS to have a private consult when he was being fobbed off by the GP (not even seen, just phone consults). One video consult later (which happened the evening of the same day we contacted the consultant) he was told his symptoms were severe enough for him to get an immediate NHS referral for scans. Luckily it was "only" a stomach ulcer and a hernia. With the correct treatment he was fine in weeks - after months of pain.

I would say 'I'm concerned I might have pancreatic cancer. I want to rule it out. What tests can be done to check?'
Info on tests here: www.pancreaticcancer.org.uk/information/how-is-pancreatic-cancer-diagnosed/tests-for-pancreatic-cancer/

Pancreatic cancer is easy to miss and often diagnosed too late.

If he has symptoms insist on tests/a referral.

If no joy, see another GP.

This is not a time to be "polite" (and by that I don't mean be rude, I mean it's not a time to not say anything for fear of upsetting or offending the doctor).

This is excellent phrasing. Simple. To the point. Impossible to misunderstand. And polite!

Please tell your DH to memorise this and say it at his next appointment. Actually, ask if you can go with him because with things like this it is easy to forget what has been said and what advice has been given. I go to some of DH’s appointments with him and he cones to sone of mine for the same reason.

Just to update, DH has managed to persuade GP to refer for Ct scan but there's going to be a big wait

Has he had blood tests for his CA19-9 levels?

In that case, see if you can get a CT scan earlier by going private - we did that and it did confirm our fears for my DH, but was lucky to have got it diagnosed quickly, and his NHS surgeon operated the next week and removed it all thankfully
Just give the private results to his consultant

I don't think so 😕