When conventional cure is not available

mikel 9 months ago

5 replies
38 subscribers
286 views

Hi,

I'm not sure where to post this - some forums seem quiet quiet - so I'll start here, hope that's ok.

I am currently stage 4 for duodenal cancer. I had the Whipple procedure sixteen months ago followed by three cycles of chemotherapy. My latest CT scan shows continued growth of three lymph nodes and I have been offered further chemo with a slight possibility of Immunotherapy. Other treatment may be available according to further analysis of my tumour but I have been told that none of the treatments will be curative and have been given a life expectancy of 12-18 months which is the median of similar cancers given the shortage of data for small bowel cancers.

Apart from some fatigue I'm feeling fine at the moment and have a good quality of life so I'm reluctant to go ahead with treatment that will reduce that when all it offers is more time. I have spoken to my GP about seeking a second opinion but he reckons I'm already under the best care nationally (in Edinburgh) so it looks like it may be the end of the road for conventional treatments for now. I haven't explored options outside of the UK and am unlikely to be able to pursue anything costly.

I don't want to use up too much time investigating alternative options - or giving myself false hope - but I don't have anything to lose by considering things that at least won't harm me so I guess I'm asking for suggestions you may be aware of through direct experience or something you've heard of from others.

I'm a 60 year old male in reasonable health. I hope to get more exercise through wild swimming and I would like to improve my diet to have more energy.

Thanks for reading.

mikel

eddiel 9 months ago

Hello mikel and a warm welcome to the forum, I am so sorry to hear of your diagnosis, like you my cancer is terminal with limited options and have had poor results from treatment but feeling pretty good and happy with life, mikel i am sorry but i know nothing about your cancer, the only thing i could suggest is to search for clinical trials of new drugs or procedures. good luck and take care, Eddie

Mmum 9 months ago

Hi Mike,

You could join the Living with incurable cancer forum - patients only group. It's a group of people with cancers that can't be cured and the aim is to manage them. Many people (like me) have treatable cancers and many have received a prognosis like yours, some years ago. A prognosis is not personal to you and usually based on generalised old statistics. Most of us don't ask for this info because it isn't helpful. The group is top notch at strategies for how to live with cancer. If you want to discuss the merits of treatment options, their benefits and potential side effects and subsequent quality of life, then I think the incurables is the place to go. Membership needs approval but it's just a tiny tick box, don't be put off because of that. I remember I ummed and ahhed and didn;t know what to put. I might have put something like "don't have a letter from my mum as I haven't told her yet" lol.

My treatment is based in Edi too. I'm at the Western, travel in from Fife.

You could also join specific groups for your cancer type and try and find someone in the same place? I guess you've done that because you have remarked how quiet some of them are. Another option is to use the search box to find people in a similar place.

mikel 9 months ago in reply to eddiel

Hi eddie - thanks for that and I'm sorry to hear that your cancer is terminal also. Great that you are feeling pretty good, I hope that continues for as long as possible. mikel

mikel 9 months ago in reply to Mmum

Thank you so much for the reply, really helpful. I will check the incurables group. mikel

eddiel 9 months ago in reply to mikel

Thanks mikel, I am on the living with incurable cancer forum too. take care, Eddie