Deciding when to end treatment

KatyK

Hi there. I have not posted for quite some time and I am curious how and when other people come to the difficult decision to end treatment. I was initially diagnosed July 2017 but I’m quite certain I had MBC for some time based on my symptoms. I started with Ibrance and letrozole and zometa and they were effective for about 38 months. I discovered I had piqray 3 gene so I began Piqray but sadly it almost killed me due to severe lung inflammation. I recovered from that and then just burned through different treatment but none were effective. My last ditch effort was taxol last winter but no luck there either. The tumor broad was not optimistic that any treatments would work after so many failed treatments. Last October the pulmonologist thought my scans looked so bad that my lungs would fail any day but a year later and that did not happen. So last February after taxol failed I made the difficult decision to quit treatment. It was not easy but I wanted QOL over quantity. Also some of these treatments only improve your life span by weeks or months, particularly if a lot of treatments have failed. I am in hospice care now, I’ve had some very good days and weeks but my health is deteriorating. And yes it is scary. I am fortunate to have loving family and friends to provide support. I haven’t seen this topic so I’ve been curious how others have approached this and made a decision.

Spookiesmom

My DH was similar. He had extensive bone mets. Did a lot of tx, didn’t tolerate any well. So he refused any more. It was a gradual slide down hill for about 6 months. Then it was like he flipped a switch. And 2 weeks later he was gone. He had hospice and it was wonderful

moth

the thread on death & dying has a lot about shen to stop & how people decide ( or the team decides- I mean some oncologists just say "there's nothing more I can do")

https://community.breastcancer.org/forum/8/topics/...

The activity there waxes and wanes ... I think it just depends how many boardies are near eol but it's a good thread

B-A-P

i think it’s a when you know you know. You said you want quality and not quantity. Both would be great but if QOL is the most important and you feel like more treatment would be a detriment to that , then that’s when I would end it. I think there’s only so much one can take before it’s all just too much.
For a while in the hospital I was told there was nothing else that could be done , but being on so few lines of treatment , I felt like there was still something left and I had actually turned around for the better and they allowed me to take Ibrance. I wasn’t ready to stop yet. I’m almost 34 with a 6 year old so I feel like I still have it in me. But I think I will know when enough is enough and to enjoy what time I have left.

It’s not an easy decision at all. I just think part of yoh would know deep down what you want for yourself.

KatyK

I did find another thread on stopping treatment, I searched a lot but never found it so I thought I’d reach out. I guess I was looking for support and feedback. The death and dying thread has not had a lot about ending treatment - maybe it does but I haven’t seen it. My perspective is that there is a lot that goes into that decision; prognosis, age, effectiveness of treatments, physical and mental health, etc. It may look like, “when you know you know” but I believe a lot of thinking, feeling, conversations have taken place to come to that decision. As I said I quit treatment in February and I’m in hospice care. I don’t regret my decision but I’m scared. I had hope for more effective treatments, I was surprised only the first one worked.

B-A-P

katyk- I’m scared too. I think a lot of us are. And you’re right. There are a lot of variables going into that decision.

But yea. Im scared too. Im not ready and unless I can be a miracle like they keep calling me (I almost died in hospital due to a varacie bleed -unexpectedly) I fear ibrance is my last shot.

I wish I had more useful things to say. I know for me that nothing anyone says to me would make me feel any better about it (again just me) it’s totally unfair.