Stopping Treatment - Update

Cathyg 26 days ago

2 replies
22 subscribers
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Hi Everyone

I wanted to update on my previous posts. My anxiety seems to have resolved itself, I think something was interfering with my anti depressants and once I changed my medication routine I seemed to have settled down a lot. The anxiety has disappeared, thank goodness.

Following some discussions with my therapist I revisited my decision concerning treatment and did a pros and cons list and it helped to reaffirm why I had made the decision I did. The reason I was questioning myself was because my CNS keeps saying that I can change my mind and it’s not too late, which is nice of her, but it made me question my decision. I think this was also affecting me mentally.

I also thought about my guilt over not doing more with my time but I realised that I am spending my time the way I want to and am happy with, and if that means I am sat at home playing with my granddaughter then so be it.

So what next? Well I have just had a blood test and my tumour marker continues to climb, now 122. I have no idea if this is high or not. One of my liver tests is also slightly high but nothing to panic about. I have a scan in the next couple of weeks to see how the tumour in my liver is growing. I am torn between wanting to know or is it better to be oblivious. I am guessing that I have another two months of feeling relatively normal at least.

SO my question is to people who have stopped treatment but have secondaries that are not stable. What checkups do you have and how long has it been since you stopped treatment.

Thank you to everyone who has replied so far, it means a lot and hugs to everyone.

Cathy

Mmum 25 days ago

Really interesting post and issues raised. I think I would fall into the "stopped treatment and stable" group. But I think I'd want to know any significant change, as there might be something that could be offered? My approach is to "read the room" rather than ask for a prognosis so I need info to do that. But case-by-case basis.

Coddfish 20 days ago

I am not on treatment but am stable and still under oncology’s care with regular scans as it’s their decision that I only need monitoring rather than treatment at the moment. I think one of the downsides of stopping treatment when they still want you to continue is that oncology will discharge you back to your GP and you are left to piece together whatever you need. Checkups and scans also stop at that point. My brother in law died of pancreatic cancer a few years ago. It was very messy. Having decided he wasn’t getting benefit from treatment, he stopped, and the family were in a right mess between GP, district nurse and hospice services as he deteriorated. It made me form the view that when I feel I have reached the end of the road, I will ask for a treatment break rather than say definitively that I want to stop.