Experiences without treatment

[Anthony Smith]

I was diagnosed 7 weeks ago with a stage 4 pancreatic cancer with mets to lungs and lymph nodes.

I have decided against treatment as my health is generally good and I didn't want to be hampered by the side effects of chemotherapy if I only have a few months left to live.

In those 7 weeks I have been full on enjoying life. Traveling, partying and generally having a good time.

My point is that I still feel the same. I get a little tired sometimes, particularly after a round of golf, but I have no other issues or symptoms. I had a stent fitted at the time of diagnosis which cleared up the jaundicd , but that's the only treatment I've had.

Has anyone else taken this approach, and if so, how long before things changed. Is it sudden? Or can I plan more holidays. I'm aware that statistics say I've got 2-6months but almost at the 2 month point. Any shared experience s would be welcome

[Didge]

Hello Anthony, Marmalade's husband did not have treatment and I believe outlived his prognosis. I was trying to find her posts but they seem to have disappeared at least on my phone! I am sure there are others who have decided on no treatment so hopefully you will get some informative replies. Meanwhile carry on enjoying your life and hobbies!

[Quickasyoucan]

Hi Anthony sorry to hear of your diagnosis. I am glad though you have recovered your health post stent and are feeling well.

My 83 year old father first had symptoms (blocked bile duct) at the end of September 2016. he passed away mid May 2017 so just over 7 months.

Unfortunately the nearly a month it took to put his stent in knocked him around and whilst he was v healthy for his age he definitely wasn't the same again. He did have 3 treatments of gemcap ie 1 round so not quite no treatment. But he kept getting temps and sepsis. Tumour did not change and chemo was abandoned. Dad too had liver mets and also lymphedema. Hindsight is a wonderful thing but maybe he would have been better off with no chemo as you have decided and had more time feeling well. His last hospital admission was the end of February and he was either in the hospice or a nursing home from the end of March as he needed assistance with personal care which he wasn't comfortable his daughters providing. He had some good days and bad days but was generally too weak to walk except v short distances from end of March onward. His last couple of weeks he was quite confused but the hospice were fantastic and he died peacefully. I am not sure if that is what you wanted to hear and every person is different but I would say if you have a good local hospice go see them access their counselling and other services they offer as they are experts at symptom management. We had 2 good weeks with dad after his first hospice visit at the end of March and they really helped us in so many ways. They are not just there for your final days. Best wishes

[Veema]

Hi Anthony...crap diagnosis, but you seem to have got your head around it, which is the biggest battle, I think.

I can only really comment on my husband's experience. He did have treatment right up until it spread to his lungs, this was June last year. The cancer then spread quite rapidly, without treatment, to his liver and the lining of his abdomen (seen on scan at end of August)...it was only at this point that he started feeling poorly. He developed a large ascites and died of sepsis in September. So, I suppose it all depends on how aggressive your cancer is and how soon it spreads to other areas of the body, which it no doubt will with it being in the lymph nodes. So, apart from the last 4 weeks or so, he felt well throughout.

Marmalade's thread 'our journey without chemo', I think it's called, is worth a read. I think your decision is to be applauded, many people continue with treatment to the bitter end, but we all know what the statistics tell us. That said, my husband had 24 cycles of folfirinox in all, it hardly affected him and we soon adjusted to a slightly less vigorous lifestyle, but we're still able to do most of the things we always did. He had 2 years from diagnosis, originally inoperable, then it shrunk enough for the whipples, but by that point it was already in the lymph, so it was a continuous chemo situation from then on. I know the outcome was the same, he still died, but we got that extra couple if years together, a load more memories and I am thankful for that.

Lots of love and luck, keep us posted when you have time. But more important, live the rest if your life, however long it maybe...none of us are promised a tomorrow. If there's one thing this whole situation has taught me, it's to do that...live our lives.

Vx

[PCUK Nurse Chris]

Hello Anthony,

Thank you for posting on the forum. On behalf of the charity i would like to say how sorry we are to hear of your diagnosis.

The decision as to whether to undergo active treatment is always a difficult one and will be different for each individual. There is no right answer. It really comes down to what is important to the person with the disease.

What can make a difference to all those diagnosed with pancreatic cancer is ensuring they are on Pancreatic Enzyme Replacement Therapy (PERT). Taking this with meals can help the body to absorb the vital energy, vitamins and minerals needed to maintain a healthy lifestyle. You can find out more about this topic on our website.

Accessing good supportive care from the local hospice, as suggested by quickasyoucan, can also prove really beneficial.

Do contact us on the support line if there is anything you wish to discuss

kind regards

Chris

Specialist nurse

Support service

Pancreatic Cancer UK