Going my way: Decided to stop cancer treatments

Posted by kitty1952 @kitty1952, Jan 18, 2018

To make a 18 yr long story short, I was diagnosed with stage 3 breast cancer in Nov. of 2000 at the age of 48. I was told it was a very slow progressing hormone receptor negative cancer that I'd had for years. After lumpectomy, chemo, and radiation I had no evidence of cancer for almost 10 years. But was diagnosed again in January 2011 with stage 2 breast cancer in the other breast. This time a hormone receptor positive type. After surgery and remaining on Arimidex for 5 years, In Sept 2016, I was told the cancer had metastasized to my thoracic spine and two ribs. I'm told this is connnected to my BRCA1 gene mutation and is the most agggressive breast cancer there is and all that could be offered is palliative care and hope for 3 more years avg. So more chemo which was much harder on me this time, and some radiation. I developed a lung toxicity in my left lung and ended up in the hospital, in and out out of ICU three times, for almost 3 weeks. I couldn't go home so I've been in assisted living on oxygen full time since July. The left lung was too damaged to get it back to normal but I did surprise all the doctors by actually pulling out of the respiratory failure and making it more than a couple months.

So we're in the new year now, 2018, and I'm still here in the assisted living. Doing pretty well except for the endless debilitating fatigue. I'm on hospice and they do an excellent job with pain control and nausea so far. I count my blessings every day for the extra years I was given to see the youngest of my four kids graduate, get married and has 3 little ones now. I'm sure I've seen all my 18 grandchildren. Well, maybe there's another possible one in the future, my son and his wife are still "discussing" having one more...lol And I've seen 5 great grandchildren, I'm sure there will be many more. I've also been blessed with all of their love and support.

I'm just wondering if anyone else has stopped all treatments like I have. I did have one more radiation treatment in November and was sick from it for about 6 weeks. I've decided it's not worth being so sick when I could be having fun visits with children and grandchildren. The cancer is just taking its course now and it seems I can feel it slowly taking over. New bone pains, new aches, sleeping longer and longer, more growths or tumors I can feel under the skin. I just don't know what to expect, it's kind of scary. I'm not afraid of death, I just hope and pray the pain stays under control and I can go peacefully in my sleep. We don't always get what we want but I hope I do this time.
Anyone else in my shoes?

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Profile picture for marygrannie @marygrannie

It’s important for all of us to do our research and not jump, but arrive, at our own decisions/conclusions. The beauty of having choice! I’ve heard some women go on a three times a week dose schedule with the Tamoxifen or Arimidex, but my oncologist didn’t even suggest that in my situation. I am glad that I took his initial suggestion to "at least give the Arimidex a try”, even with a low recurrence %. Now I know, I am one of those who cannot tolerate the side effects. Jealous of those who never have side effects! We are certainly all different in that regard. I have also heard that some meds/pills can be cut in half, but some say no, don’t do that. I think most prescriptions simply want the user to contact their doctor before cutting pills in half or micro-dosing on their own. Best wishes to everyone, to find our peace, and enjoy deep cleansing breaths!

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@marygrannie I understand where you’re coming from. I was originally put on Anastrazole and it took a few months to show side effects but finally after 9 months, he recognized the problems and said “you shouldn’t have to live in pain” and switched to exemestane. Started to see side effects at about the 4 month mark which progressed to major problems by about a year into it. I did suggest every other day therapy but he wouldn’t entertain that because it doesn’t meet standard of care. Did finally tell me to take 4 weeks off and call -I took 6 because it took me 4 weeks to just feel human again - but he wanted me to try it again, daily dose. I’m now off it again and ready to start letrozole because he feels I need to be on something and if this fails, will have to try Tamoxifen and I figure will have to argue the dose. The problem with all of this is it’s impossible to know the outcome. There are women who have declined everything and been clear for decades, others who get reoccurrences in a couple years. If you don’t take the meds, you just don’t know what the future holds and if it’s the second outcome, then you’re starting from scratch. I just keep plugging along following the recommendations but not blindly. I am on 3 forums and listen to what we all say on these forums - from the trenches as it were. And I research things that come up if they seem weird (they don’t recognize tinnitus as a side effect of exemestane but found 2 articles that show up to 56% of women get it while on the meds AND in my 6 weeks off, it improved about 60%). We just have to do what we can and what we are comfortable with.

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I support your decision. May get some help with pain from palliative care.
I've had two stage 4 cancers and am messed up from the treatments and can relate.
Hoping you can enjoy some time with those you love.

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