Controlling my own journey

I hope some people are able to share with you soon. This is a very personal decision. I do not see your age, but i wondered if that is a factor. Your desire to speak with others like yourself, is what this site is all about.

Welcome to Connect and thank you for your post--which is both personal and important for others. I hope you get response that are helpful. My breast cancer situation is somewhat different, but I will share. I have a rare neuroendocrine tumor that was never staged but that is aggressive. I had to switch oncologists when my original one left practice. My approach has been for only minimal monitoring, because I don't necessarily expect to treat Stage 4 for numerous reasons--including co-morbidities and my positive experiences as a hospice volunteer. So I needed to write this all up, and was pleasantly surprised when the new oncologist was fine with this approach. I have, however, hired a palliative care doctor on a concierge basis. I know her socially, the cost is affordable, and I have an advocate in her. This is unusual though, and I'd recommend palliative care within the system as a better option most of the time. I hope you can get a referral without too much trouble. Personally, I tend to like to have support in place even before I absolutely need it. I gather that palliative care should automatically be available for Stage 4 patients. Please stay in touch when you feel like it, and will be thinking of you.

I very much identify with your post as we don't discuss when enough is enough. I am of the same quality of life state of mind after likely failing Truqap, my 5th line. I asked my oncologist what to expect if I stop further treatment in order to preserve (or improve) QoL. His immediate response was "you likely will have 3 to 6 months".
I don't believe him as like yours, he sells SOC and he had three options all of which will maybe give me a few months with poor QoL.
I have an appointment with my palliative doctor and will discuss this with her.

I have stage four metastatic breast cancer as well, I am still on treatment for now but at my recent appointment I mentioned considering stopping treatment. It's been over 3 years now on it and while it's "working" to keep my cancer at bay, I have no quality of life being on the treatment. Of course my family, friends, etc all don't understand that and want me to stay on it. They don't have to live with what I live with every single day, they just see me as alive and of course don't want to let go. For me though, I haven't felt "alive" since I began treatment. I actually regret ever starting treatment because I feel like it just altered me in only bad ways and I feel lost, like I don't even know who I am anymore. It's not a good way to feel and I am left just wondering, if I stop treatment right now... would I ever be able to even be "me" again before the cancer takes back over? How long would it take? Or is it all just too late for that anyway? No one can answer these questions and it's horrible living with all of this and feeling so alone with it all. My family just shut down and don't want to listen when I talk about stopping and ending this horrible journey. I wish they could support me and I wish they had supported me when I was first diagnosed and I said I didn't want treatment. Instead they pushed and pushed for it until I gave in.

I am sorry that you are going through this and facing this decision and the consequences. I hope you will hear from more people who have already made this decision. Hugs to you, I pray you will find good support and palliative care that puts your needs first.

Have you ever heard of Bio-Med research. If my cancer comes back I am going to camp at their door.

@coco46

I’m so sorry to hear this, my family thank goodness doesn’t push me I guess they know they are not the boss of me! Remember you are in control of your life not them, sounds harsh but its the truth. They probably just don’t want to lose you and they don’t know what to do for you and they’re scared too. I can’t imagine feeling that way for 3 years, I knew by month two I wasn’t going to continue with treatment my body showed me I wasn’t up for it and I listened but I did give it a try. As of right now I am off all meds only a couple of residual effects but they are slowly getting out of my system. Even if I get a few months or a couple of years I know I would rather be living my life and not going from bed to couch to chair. I wish you the best remember you are the boss of you!

@katgob

I’m 67 but in actuality I was in fairly good health until I started taking the meds.

@mir123

I am still looking for one, trying to get my insurance and the hospital to talk more, my Onco called the Palliative unit in his hospital Morgan’s (very out of character for him), they only have in hospital palliative care so he has to send his patients home without support and he and his team are so frustrated. I am pretty stubborn even if I don’t go through insurance I will get someone to help me and I will still get the system changed for others! It’s just crazy to me that this is a huge hospital all over the state and probably all over the country and they don't offer this care. If I was still on the meds I would have no fight but I do now and I am going to use it while I have it 🙂

@anjaq

Hope you have more time and don’t suffer too much please keep us posted

@pegtheleg

Hope you never have to see them!