Going my way: Decided to stop cancer treatments

Thank you so very much for posting link to this AI resistant cancer! I have not read this and it certainly makes sense - article is from Jan 2017 and I wonder if there have been updates? I see my onco in October for first mammo after lumpectomy and radiation for ILC. It will be a year since my last mammo that fortunately picked up ILC but MRI showed much more detail. The ultrasound did not help. I will report back! xo

Somehow I missed this thread until the recent posts--I'm finding it helpful. I have a rare NET in my breast--life expectancy maybe another year or two. I turned down chemo but did a lumpectomy, 3 weeks radiation, and take an AI. None of this was too stressful. When it spreads I've decided to not treat it, just as I decided to go for moderation the first time around. I have numerous co-morbities so nor a great life expectancy without cancer.
I took care of my first husband who died after surgery when he was 36. That experience really made me want to focus on the family as a unit and to not take my caregivers for granted. 10 months since diagnosis have been well spent seeing friends, weekly visits with my grand-daughter, a lot of communication with my husband, daughter, and best friend. I've worked to clarify fiscal things, my house, and possessions. It has been a beautiful opportunity. I've always planned/hoped to go into hospice as I was a hospice volunteer and also did direct care for a friend and my second mother-in-law. I've learned we're alive even when dying--and there is unlimited opportunity for connection, spiritual growth, and yes even autonomy. Regards to everyone.

@mir123 I helped my mother take care of my father while he was in hospice. I helped take care of my mother when her breast cancer came back. She chose to stay at home. I have always felt it an honor to care for both. Sometimes I look back and wish I had done a few things differently. It for me, was easier to see them go though, knowing all they had both endured. It is also easier to think of where they are together. You are so right about spiritual growth. There is joy to be found in the midst of pain. 💕

@nannybb Thank you for the note. When I look back I see this must have been written about 3 years ago, and I'm still alive! No one quite knows why, but I'll take it. It's touching to hear how you were able to care for your parents. There is so much uncertainty in life and yet love and connections do endure.

Not exactly in your shoes, more like in your sandals or maybe flip-flops. I’m 80 and have decided after DCIS in 2002 and now ILC almost 3 years ago, I’ll agree to the mastectomy. But certainly not a reconstruction.Contraindications with both types of meds after surgery.
I have absolutely no desire to live forever, nor do I want to live a degraded life! so I support your thoughtful process of wanting to be in charge of your own life.
Dig into the writings of Dr Zeke Emanuel, an oncologist and bioethicist ViceProvost at Univ Penn & Chair of Medical Ethics and Health Policy. Especially in the Atlantic, read his article “Why I Hope to Die at 75”, (NOT in support of euthanasia OR suicide). Just another piece of this process we are all going through beginning with birth!
Prayers for you to be strong…

@mir123 Three years ago? Amazing. Thank you for your response. It was not difficult to care for my parents, in that, I have a medical background and have been a professional nanny for years. It felt like with my mother, especially, we had switched roles. Not that I felt like I had become HER mother, but that I could feel the reversal happening slowly as her dependency increased. My older brother hated all things hospital. Which is funny, because he married a doctor. My sister I think just could not face the fact mom was dying. I am finding out how much it affected my son. Each person has their own way of moving through the process.
I would love to hear more about your original diagnosis if you don't mind sharing. Thanks again. Blessings.💕

@nannybb The original diagnosis was a neuroendocrine tumor in the breast. But there were four conflicting pathology reports. My oncologist and I both decided to go with Mayo's assessment of NET. It was aggressive, rated a 3, estrogen positive and human growth positive. A NET specialist said it could not be treated as a NET but as ordinary breast cancer (the general consensus). It was never staged. My oncologist had never seen this, but the radiologist had seen something similar so I did do radiation along with lumpectomy and now letrozole--which I find totally fine (many do not). I didn't do chemo or immunotherapy due to co-morbities and as my nephrologist would not sign off on most of the suggested infusions. It's been a great four years! I don't consider myself "cured" but am content for now.

@mir123 I'm with you on the "conflicting pathology reports." I had the same problem, but for lung NETs. Do you happen to know if your doctor ever mentioned the drug tamoxifen? I looked up the med. you are taking and it seems quite similar, at least in how it works and possible side effects. The breast cancer that runs in my family is rare but obviously in the family gene pool. (two generations so far) I am trying to stay current with information on all new protocols for breast cancer because of the obvious. Thank you for any information. Blessings 💕

@nannybb Tamoxifen wasn't the first drug suggested for my post-menopausal estrogen positive breast cancer--at least in my experience. Letrozole was the oncologist's first choice, and I've stayed on it without problems. I gather that if the class of AIs doesn't work Tamoxifen might be suggested, but no doubt cases vary.