Stopping Treatment

Hi Cathyg

I am in the same position as you, and haven't had any treatment since July 23. I haven't been living with my diagnosis anywhere near as long as you have....you have done incredibly well to cope with everything for so long!

I did ask the forum team if we could have a separate forum for people in our situation, but it hasn't happened. Maybe we could jointly ask them again?

This forum is the 'best fit' for me, though I do read posts in other forums.

Please 'friend' me if you want to have discussions privately!

My motto is 'quality over quantity'...that's how I describe my situation. I hope you are currently feeling well, and enjoying your time with your family and grandchildren.

best wishes

Kate

Hi 

I decided to stop treatment in June 2024, after a period of 2.5 years, but for different reasons than you.  It was with the full support of my onco.  Three reasons: (a) stop before the undesirable side effect (b) I got fed up with the traipse to the hospital (c) I believed I had got the full benefit from the treatment.  

I think there's quite a few people in this group who are no longer receiving treatment.  

I totally understand and respect your decision.  

I haven't yet reached the point of ceasing all treatment but that time will come.  I'm transfusion dependent, which means I currently need platelet transfusions at least three times a week and red blood cell transfusions at least once a week.  They don't affect the cancer directly but are classed as "best supportive care" aimed at improving my quality of life.

The downside is that it's a quite disrupting schedule which limits the time available for doing other things.  If the frequency of the transfusions needs to increase, I will probably stop them, even though doing so would reduce my life expectancy to weeks.

My consultant is very much onboard with my plan to say "enough" when I no longer feel the upsides outweigh they downsides.  I already had an advance care directive in place before I was diagnosed and I asked for a palliative care consult the moment I got a confirmed diagnosis.  I'm as much in control of what happens next as I can be at the moment and I intend to keep it that way.  When the time comes, I will seek approval for voluntary assisted dying.

I do get annoyed with being told "you're strong/a fighter" etc and with ceasing treatment being viewed as "giving up", so I've only told one person outside my family about my diagnosis and prognosis.  I don't want people pressuring me to justify me choices in my life at this time.

Most of us here will face that choice eventually. I think the decision to stop treatment is a very brave one and not giving up at all. It's all very well for outsiders to judge but they have no idea what disruptive treatment can do to us mentally. It's not just the physical side effects but our overall quality of life. When someone decides to end treatment it is a decision that everyone should accept and tespect.

Hi Cathy

I think it’s something most of us with incurable cancer will have to contemplate at some point. Our bodies tell us when enough is enough, when the downside of treatment isn’t worth the upside. I am lucky to be in a stable remission, not on treatment, following immunotherapy. I live with some health issues thanks to the downsides of that immunotherapy and the treatment I received to recover from it. My next line of treatment, when (hopefully if) my remission ends, is by all accounts pretty nasty and doesn’t give many months of benefit. I am not at all sure I will accept it when the time comes. 

If we can't have discussions about ceasing treatment and people's feelings about their end of life care, then this isn't really a safe space for those of us with incurable cancer.

Either we need a separate space for those discussions or we need a way to flag discussions which may upset others - either way, it needs to be easy for people to find those discussions.

I think it is very courageous of you to decide what is best for you and be in control. It is so much better in Australia that you have the choice of voluntary assisted dying. 

Hi everyone,

My name is Dylan, and I’m part of the Online Community team here at Macmillan. Thank you for creating this discussion, Cathyg .

I just wanted to leave a quick reply and let everyone know that the Living with incurable cancer forum is a safe space for members to talk about any part of their experience, including thoughts and feelings about stopping treatment. This forum was created after members asked about a separate space only for members living with incurable cancer.

We do our best to make sure all forums remain safe and supportive for everyone. The Online Community is moderated in line with our Community Guidelines. Our team is also here, seven days a week if something ever feels concerning or upsetting. You can let us know by clicking the ‘flag’ button under the post or reply, or by emailing us directly at community@macmillan.org.

If you have feedback or ideas about how we can make the forums easier to navigate or more supportive, we’d really like to hear from you. The Online Community is shaped by its members, and your suggestions help us improve it for everyone.

Hi Cathyg  I am sorry I have only just seen your post.  Thank you for being so honest and coming here to talk about you stopping your treatment. There are far more people here in the incurables that are in the same situation as you, many of which you probably are not aware of because there are many more members of the group that only come here to read posts and not post themselves. People find support in so many ways, some feel able to be honest and write posts, some feel they need to talk in person to other people, and some find support by just reading posts from other people that they can relate too. 

Patrick is right, we will all probably have to make this decision ourselves at some point, and for some they may not feel comfortable speaking about that right now, but that’s ok. They don’t have to join in the conversation, or even read the post if they don’t want too, they have the choice to scroll past it, but please do not feel that you cannot come here to talk about the serious topics connected to incurable cancer. Yes we have some light hearted threads as well, and some may say that they shouldn’t be in the incurable group. Like Dylan said, it’s the members that make this group, but we are all here for the same reason, and this really should be the best place for you to feel able to talk and feel safe to do so.