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Going my way: Decided to stop cancer treatments
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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@marygrannie of course, I lost all my hair with the chemo and starting the Anastrazole after just 2 months, difficult to assess that. I did get regrowth but question of it would be better without the meds. As to the exemestane, definite hair loss plus thinning, texture problems. It was interesting to see the difference in just 6 weeks off the medication. I could wash my hair, dry it and it actually had some texture and body. When I restarted, back to being able to pull clumps out, scalp more visible and hair seems thinner again. Actually to the point where it looks so,bad all the time, I may have it cut off. So yes, this is all from the ai, not the chemo at this point. My doctor comments that I “need” to be on something and isn’t willing to give up on trying whatever we can but also has admitted some women can’t tolerate any of the meds. I guess I have to be happy that I don’t have some of the more severe problems - have seen some women say they are incapacitated on these meds. I’m not to that point, more just aggravated at the constant lower level but multiple side effects that make life difficult.
Good luck and hope you had a wonderful holiday.
@jardinera25 I had too many side effects. But the DIPNECH symptoms are back. 😒
@nannybb Octreotide LAR , long acting shot once a month.
@mistymar Did you have hair shedding? Mine was awful. And only after 2 months. I’d be bald by now if I had stayed on it. I was very surprised when my oncologist said to simply stop
taking it. Caught me off guard, since he originally was pretty strong about asking me to “at least give it a try”. And I am glad that I did, but it was not something I could continue on, especially with only the 5% recurrence rate. Which I understand is not a “fact” but it is the
test they do to come up with the %. I will talk with him again later this year to see what might
be new but if side effects are the same, doubt he’ll suggest taking it. I am so jealous of those
who can take the pill and have no side effects. I’ve always been sensitive to any pills……if the pain pill says take 2, I take 1. I don’t take any daily medications for heart or bl pressure, etc.
Very lucky in that regard, just “sad” that I certainly had no luck in the world of going through cancer tears and fears. Best wishes and have a safe and Happy 4th!
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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3 Reactions@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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4 Reactions@jardinera25 I salute you for taking that decision into your own hands and I wish you well as we walk this journey in support of others who are also walking the same path! And Happy 4th!!
@jardinera25 Dear Patty, I posted about the type of BC that runs in my family. It is rare. It has been in two generations so far, so I've always paid for the best medical supplimental insurance I could find, just in case.
I never in my wildest dreams thought I would have lung cancer - NETs.
I found it interesting that (if I understood you correctly) you mentioned to your doctor your having flushing etc., and it was ignored. I also had that experience. Makes me wonder how long I may have had the actual cancer.
I saw my GP this last week after finding I now have a heart condition. Upon research, I read 50% of NETs pts. have cardio involvement at some point. That seems hugh to me, so I am going to bring it up to a cardiologist, as soon as I am given a new one.
If you are asking about the shots, I also posted some where in here, I was on the self-administered 3xs a day version. It relieved the flushing and the phlegm in my throat, but made me tired. My NETs specialist doc. said that could not be true. "Many many people on the shot with no complaints of fatigue." He is wrong. It is listed in the PDR as one of first side effects. He then put me on the once a month version. I could not tolerate what it did to my intestinal track, and it made me bed ridden with fatigue. I'm off of both right now until my oncologist can review my last PET scan. He was not convinced I had DIPNECH. I will say however, off the shots, the flushing and phlegm have returned...🤒
Also after asking a few questions, I have come to realize my GP knew absolutely nothing about NETs, DIPNECH, or the symptoms involved. It explains why she brushed off my initial symptoms, and did not send me to OSHU right here in Portland to begin with. It can be a very disheartening journey because of ignorance on some peoples part. She saw my initial biopsy. It would have been nice if she had done further research before referring me to "just any" surgeon.
@jardinera25 I'm sorry to hear of your difficult and complicated situation. No oncologist would treat the NET tumor as anything other than "ordinary breast cancer." I had hoped it could be treated as a NET, but it cannot. I was turned down as a NET patient at University of Utah and at UNM was referred back to breast cancer department. So this was a learning experience for me--NET in breast is not treated by NET specialist. The tumor was estrogen positive, so I have been on letrozole going on four years with no ill effects, thank goodness. It has been very confusing. Has the tumor in breast been biopsied? NET should show up on biopsy.
@marygrannie I have so much admiration for you and what you posted. We are almost the same age. I too want to live to continue to work and be a part of my grandchildren lives. I totally agree regarding yiur comment on God's word.
As far as your brother's take, it would appear he did not think it through as to what if it had been him with Polio. Life is a gift.
I too have had bb size lumps which needed further investigation. One even went as far as putting me on the table for the biopsy. They had to do ultrasound guided, and could no longer find the bump. I pray your outcome is all well. Blessings, 💕