Just diagnosed Stage 4

[Mayzee]

I've been contacting my GP(s) regularly for at least the last year and even saw one face to face once.

A year or so ago I started to lose a lot of weight, my appetite reduced, I had mild stomach pains (and for a while more painful back pain) and wanted to find out what was wrong. First telephone conversation I was told to eat more. Second I was prescribed omeprazole. Then I actually saw a GP who felt my stomach and said I had IBS. Since then I've had a lot of blood tests, but none for cancer markers, and I was diagnosed with Type 2 diabetes, given gliptins when my blood sugar continued rising. The gliptins caused a very rare autoimmune skin disease, pemphigoid, which I was given steroid tablets for but they were stopped after 2 weeks and the blisters came back. 6 weeks after the steroids were stopped the letter from the dermatologist was received saying I had to reduce the steroids slowly.

Late last year I had phone appointments with a part-time GP I've never seen/. By this time my weight had dropped to almost a third and I'd been given an anti-diabetic grug that causes weight loss. At least the new doctor tried to find out what was wrong with me with many blood tests and finally, in mid-May this year, referred me for an urgent CT scan. A week later, on the 26th May 2022 I had a phone call making an appointment with a specialist nurse who told me I had a large mass in my pancreas, a small amount of cancer in my lungs and it was inoperable. She prescribed omezaprole plus 2 Creon capsules with my main meals, contacted a hospital dietician and the local hospice, and arranged for me to have a biosy as she said that chemotherapy could extend my life.

I am 72 and alone so I have a lot to do and not long to do it. I've arranged for a charity to look after my cat even if it's a case of me being rushed to hospital in the middle of the night. I've arranged for prescriptions to be delivered as I don't know how long I'll be able to drive and have nobody to take me or collect them. The3 hospice has said they will do what they can to help me but they don't seem to be in a rush although I only saw a hospice nurse for the first time on Friday.

In order to have chemo I'd need to get some weight on first and thanks to the dietician and the PERT I have gained around a kilo but I have some bad dats and some that are better. I don't think I'll have chemo as having some quality of life is more important than a little extra possible quantity, and if I don't have chemo I won't need a biopsy. I still haven't completely taken it in although I thought I may have something wrong with my pancreas some time before any doctor thought of it but none thought of checking cancer markers or scans until the scan referral on the 18th May. Also the diabetic drug has been changed to the only tablet that might work, but my diet has to be the opposite of a diabetic diet, high carbs and high fat.

I apologise for such a downer of a first post but the only person I spend time with is 93 with her own health problems and a fear of cancer.

 

I see that posts in this forum seem to all be from relatives and don't know if I'm the first with advanced pancreatic cancer to post here.

[Sandyvon]

Mayzee: I’m very sorry to hear your story. It must be very difficult to process this new information.

 

From my perspective, knowledge is power so identifying the type of pancreatic cancer you have is important. Please consider a biopsy as it will inform the treatment that is recommended for you.

 

Not everyone reacts badly to chemotherapy. 
 

My very best wishes.

[Netty]

Dear Mavzee,

There are a few similarities with my husbands recent diagnosis,  he is coming on 72, he has been prescribed creon he too has lost a lot of weight and the mass on his pancreas is wrapped around blood vessels and inoperable,he has been offered chemo, his next appointment is in two weeks I suspect to decide on a treatment plan, he wants to try anything that might prolong his life, I understand the fear of quality over quantity but I think you can stop at any time with chemo if it's not suitable, my husband was given his diagnosis before his biopsy and as yet we don't know what stage type or size!

I have requested the information to try and understand what we are dealing with.

As the wife of someone going through this i can tell you it's devastating coming to terms with our new normal, I am so sorry your having to do this on your own, I am taking a lot of comort from this forum and I hope you can too.

Lots of love

Netty

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