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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 While I stand corrected because of the headline which was not written by Dr Emanuel, he did write the article that was published in The Atlantic magazine in October 2014. Dr Emanuel has since had to multiple times defend himself because of the misinterpretation of the false headline. Read the entire article and decide for yourself why I agree with him.
To find the article you usually need the author and headline —misconstrued or not— to find the original.
Don’t jump to conclusions too soon. Hugs to you on your journey. I am also going to be treated on my own terms at age 80.
Currently I’m fighting to be given 5mg Tamoxifen but will settle for 10mg. Definitely not taking 20!!
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!
@nannybb Yes, I tried going on Tamoxifen for a while, but wouldn't go on 20 mg; started with 10 mg. in October. After 2 weeks that started giving me bad headaches at night & joint pain, especially in shoulders & hands. Labile hypertension high spikes persisted with it. So I cut it down to 5 mg for a while, which my Doc says wouldn't work. I told her it's commonly the dose after European studies tested it, & she admitted there's a trial going on now in the US for 5 mg. Anyway, I had a LOT of things going on med-wise that could be interactions with the Tamoxifen, like heavy antibiotics for a root canal (due to my hip replacement last August). I also have another complicating factor: I'm on a monthly shot for another type of cancer, Neuroendocrine tumors. That drug doesn't cause me problems, but maybe in combo with the hormone blockers? No Doc can tell me.
All told, I stayed on Tamoxifen for 2 months pretty steady, then started using it about half the time for 2 months depending on how my labile hypertension was going. Every time I started back on the 5 mg I got neck & head aches and very painful joints. So, I decided that all 4 of the hormone blockers had given me harmful side effects, & I'd just stop a while & enjoy my Spring and gardening! I feel great and my labile hypertension is improving a bit, with walking and I need less BP meds all day. I still get hot flashes at night. My body just doesn't like every last drip of Estrogen taken out of it. I've tried many drugs since mid 2023 and I'm done with hormone blockers for now. I know some folks can tolerate it without the side effects, but I can't.
@mimi09 My Doc wouldn't reply when I asked for a 10mg-sized pill of Tamoxifen (rude), so that I could cut it. So I just did my own cutting of the 20 mg with a really good pill-splitter, keeping only the well-split ones. It felt great to get to make that decision for myself, at age 76.
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1 Reaction@mir123 I am so glad you mentioned your experience with NET tumors! This is the first time I've seen anyone write about having breast cancer along with Neuroendocrine Tumors, & had "conflicting pathologies." I was found to have NET tumors after 10 years of facial flushing that no doctor diagnosed when asked about it. So I went in for a PET Dotatate scan in early 2023 which showed numerous NETS in various places; but it also showed a "shadow" in my rib cage, which a breast MRI said was a recurrence of BC from when I was 43. Not small, 9cm, but it hasn't metastasized elsewhere. So I've been getting Octreotide shots since then to stop any new NETS. I've tried 4 different hormone blockers, & it seems one of them shrunk it to 7cm, but side effects from them were too much to bear. I cannot have radiation unless it shrinks to about 3 cm., and chemo sounds horrible (again.....had it at 43). I'm now wondering if that tumor could really be a NET tumor! If so, I could skip the H-blockers, that have totally messed up my blood pressure & leg circulation. Anyway, I'd love to know if you also are on Octreotide or other NET drugs? Also, I see @nannybb has a similar story with lung NETS, so would love to hear from her.
Thanks to you both for adding these details to your BC story! ~ Patty
@jardinera25 May I ask what shot you are taking for NETs?
@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, 💕
@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.
@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 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!!