Need a little hope!

Hi

Saw your post was unanswered but it really reached out to me though my wife's cancer is very different (Leiomyosarcoma).

My wife was always totally clear she never wanted a prognosis and I really struggled with that. However in our 6 years with cancer I came to realise how sensible she was. Nobody would have guessed how well she would respond to chemotherapy but there are lots of friends on here who have outlived a prognosis. We have come to recognize a prognosis is at best an educated guess and based on data that is 5 to 10 years out of date. In some cases a prognosis might be helpful but often they turn out to be exactly the opposite - but it such an easy question to ask.

With a lot of help on here and elsewhere our family is now living with cancer - and we are going to be doing that for as long as possible.

<<hugs>>

Steve

Hi, 

I am 57 wuth duodenal adenocarcinoma, I did have spread that made me inoperable, but my palliative chemotherapy has been really helpful and on my last scan there was no identifiable cancer, and I am well. I am currently having scans on a four monthly schedule. I feel really fortunate because I was told that I would be lucky to survive for 12 months in November 2020 

Hi Salis  (Sarah). I have been catching up with your journey. I really hope you are doing well. Such a young age to be facing such a difficult thing- not much older than me in reality - I am 47. My Mum, 72 has just been diagnosed with stage 4 small bowel cancer. I am kicking myself now as attended oncology appointment with her today and didn’t ask about type of cancer although am assuming adenocarcinoma. It has spread to peritoneum but consultant seemed vague (even when pressed) on whether it had spread to other organs. This is all new for us as her symptoms only started in late Nov which they diagnosed as gall stones (which she does also have plus stomach ulcer and severe oesophageal scarring.) She has been given prognosis of 3-12 months and offered chemo but it sounds intense - Rox over 18 weeks. They have said this may give her another 4-8 months but when questioned said this would need mean surgery was an option. Can you offer any thoughts? I feel a bit like we don’t have enough info and not sure how Mum can make an informed decision. What else could we/should we find out? Many thanks.  

EOX not ROX - auto correct! 

Sorry spotted another error - need to type more slowly. Have said surgery not an option. I asked whether chemo may means it becomes an option - they said categorically no. 

Hi, soorry to hear about your mum, there is such a lot to take on board with a new diagnosis, and you can not possibly expect to know all the questions that you need to ask.

I have a very helpful liaison nurse who I can contact with questions, hopefully your mum has one too.

My team did not expect me to have such a good response to the palliative treatment I received, and though originally the surgeons had said they would consider treatment if I had a good response, it is not now being considered, I think that is because there is no active cancer seen. I feel very fortunate.

I think the important things for me when I was first diagnosed was to ensure that my husband and children knew my wishes about treatment. I know that if the first round of treatment had not been so successful I would not have wanted to undergo similar treatment again as it was so debilitating, however if I had a recurrence now I would take more similar treatment in the hope that it would give me as much time again.

My treatment was capox, so I can't comment on your mums regime.

Much depends on your mums situation, and how much support she has. I would have struggled if I lived alone.

It was very helpful to be warned about the side effects of the treatment, when my husband collected me after treatment he made sure the car was warm and had two hot water bottles and a hot drink for me, because the treatment caused extreme cold intolerance.

I feel that I have rambled somewhat here, please feel free to ask anything, either here or more privately through a friend request