DM doesn't want to know prognosis but does SR1 form suggest less than 12 months?

[UnBledPerdu]

My Mum has secondary pancreatic cancer - she had surgery a few years ago and had no signs of disease afterwards but it has now spread to her peritoneum.

She has said she doesn't want to know her prognosis but I've recently found out that her oncologist has given her the SR1 form to claim PIP.

I looked online and it said they give that form to people they don't expect to live more than 12 months.

Is that right or do some people with an SR1 form go on to live longer than 12 months? Appreciate no one would be able to tell me for definite either way. I'm just wondering if there are many/any examples of people living longer than the 12 months (which I can fruitlessly cling to for comfort).

https://remedy.bnssg.icb.nhs.uk/adults/end-of-life-care-and-hospice/sr1-form-formerly-ds1500/

I think you are correct. i am so sorry for your mom and your family.

Unfortunately, yes, it means your Mum's doctor thinks that it's unlikely that she'll survive longer than a year. It doesn't mean she absolutely won't, but the form is used when the doctor can be reasonably confident.

I'm sorry to read this. No-one can really tell you how long your DM has but the SR1 form is only completed in life limiting circumstances and sadly pancreatic cancer has poor outcome due in part to late diagnosis.

Our dear DF was diagnosed with pancreatic cancer quite late on (stage 4 - so spread outside the pancreas) and survived another 10 months with mostly good quality of life. He was too unwell for any chemo because of the late diagnosis/metastases but had 2 stents put in (in his biliary tract?) when he got jaundiced from tumour progression. He was given Creon capsules to help him absorb nutrients from his food (and Ensure to boost his calorie intake) as the pancreas secretes digestive enzymes which go haywire with this cancer. He had diarrhoea (especially after eating) which he found tricky to deal with and curtailed him leaving the house much towards the end. But with the help of the hospice at home palliative care team we managed his care at home. We got to spend time together and I look back now and treasure the time that we had.

Thanks for your replies ❤️

She is starting chemo next week, so hopefully that might extend things a bit.

@Belaymehearties my condolences for your DF 💐 You sound like an amazing daughter.

Is that right or do some people with an SR1 form go on to live longer than 12 months?

What they believe and what actually happens are different things though, so yes, people can go on to live longer. Someone I knew was diagnosed terminal - six months at best in early 2020. two weeks later everyone went into lockdown and the only treatment she could access was pain relief. Despite that she went on to live nearly 24 months more, and with a good enough quality of life to get out and about with her dog almost up to the end.

Hoping that whatever happens, and however long your mother has left, she is granted as good an ending.

It's usually 6-12m but that isn't to say that's certain. Especially with chemotherapy and maybe immunotherapy - things can look a lot different. Your doctor will be wanting to make sure she has access to all the support she can get because she has an illness that does prove terminal for some people within that time frame. It doesn't mean it will for her.

DH got that form when he was told he had pancreatic cancer, he claimed PIP under special measures, a nurse from one of the cancer charities completed his forms for him. He did live longer than 12 months (his cancer was later confirmed as cholangiocarcinoma with liver mets so was quite advanced).

When my mum was diagnosed with S4 pancreatic cancer at the beginning of the year she was given this form but the doctors said she may live longer but as she was well at the time.

Unfortunately the chemo she’s had has been so harsh and her side effects have made her so ill. Is your mum having Folfirinox? Some people sail through it and others don’t but I guess you don’t know until you try!

Yes this is what it usually means, but it's an inaccurate science - they will err on the side of being negative. DH lived for 22 months after his SR1 was completed.

I had to sign the back of my dad's form today, he couldn't write properly. Leukemia for him unfortunately. The local hospice brought the form round when they came to discuss end of life carie. so sorry