Newly Diagnosed

[Mandy Moo]

This is my first post on here. I'm 59 years old and was diagnosed with a 4.1cm tumour on the head of my pancreas on 6th January 2022, after having unexplained abdominal pain since at least 2016. I was also told that I have "lumps" in my pelvis (5cm on the right and 1cm on the left) which could possibly be Krukenberg tumours that have spread from my pancreas. I have an appointment with my Pain Specialist and Specialist Nurse in 2 days for the results of my PET-CT scan and endoscopic ultrasound. My Consultant has already told me that the tumour on my pancreas is bigger than he would have liked and is borderline for the Whipple's procedure but this is also dependent on whether the cancer has spread. I also have a clot in my superior mesenteric vein (SMV). I take Creon with every snack, drink and main meal and Fentanyl patches, Pregablin and Oxycodone for my pain, as well as Laxido and Senna for constipation. I am absolutely dreading my results in 2 days time and am expecting the worst. Any advice that you could give me would be greatly appreciated. Thank you.

[Borobi]

My heart goes out to you Mandy. I’m not sure what to say. You’ve had the awful news that you’ve got pancreatic cancer so there’s not much more worse news than that. Hopefully chemo will shrink the tumour enough so you can have surgery. Ring the nurses on the support line. They are lovely and helpful and will have lots of useful information for you. If you feel up to it let us know how you go on. Hug your loved ones and be kind to yourself. 

[Mandy Moo]

Thank you Borobi for your kind words. I think I know what is ahead of me and I'm heartbroken for my son and daughter as they lost their brother (my eldest son) to cancer at the age of only 22 in 2007. I've already decided that I'm not having chemotherapy as I saw what my son went through and this would only be to extend my life, not cure the cancer.

[Borobi]

You’re very brave Mandy. Although I guess you really don’t have a choice.
 

But don’t write off chemo straight away. My husband a was fit and healthy 66 year old when he was diagnosed. He had 6 months Folfirinox which shrank the tumour really well, but not suitable for surgery. He coped really well with the chemo, a slightly changed appetite, but no nausea. His only real side effect was peripheral neuropathy where he lost some sensation in his fingers and toes, but that came back after his chemo was finished. He’d had Non Hodgkins Lymphoma ten years before and the chemo for that wiped him out for about ten days after each treatment. Folfirinox was much easier to cope with. 
 

Sadly subsequent radiotherapy and chemotherapy didn’t work and he died 20 months after diagnosis but he was really well until 6 weeks before he died. I’ll never know for certain, but we assumed the chemo gave him an extra year. It also gave the kids (both in their thirties) the opportunity to spend time with him, making memories. Altho of course Covid buggered some of that up. 
 

Maybe consider trying one cycle of chemo to see how it affects you. 
 

Best of luck with whatever you decide.  

[Mandy Moo]

I'm so sorry to hear about your husband. It's not only affects those of us with pancreatic cancer but the whole family. I have my appointment at 3:00pm today for my results so have hardly slept all night.

[Lulu62]

Hello Mandy Moo

i read your post, and noticed it was in January unsure what year?

 

when I read you had your results that day, so you hardly slept really reminded me of you.

I am exactly the same, my nerves are on edge for every appointment.

 

just wishing you the very best for the next forthcoming months and more.

 

best wishes

 

Lulu