Refusing AI Treatment

I had to stop taking endocrine therapy after trying hard to deal with it for a year. I'm 4 1/2 years out from my diagnosis so don't know how things will shake out for me ultimately.

Hi! So glad I found you folks. I was diagnosed with Invasive lobular breast cancer (2.9 cm; HR+, HER-; Stage 2, grade 2; node negative) I had a lumpectomy and 20 sessions of proton radiation. I have an Oncotype Dx of 17, indicating a 5% chance of recurrence within 9 years on AIs, 10% without. I also had a Ki67 if 3, indicating a slow growing tumor.
I visited a medical oncologist who immediately prescribed Anastrazile, and got a second opinion with the same outcome, actually being scolded for even considering non-treatment. I am 69 y/o, very active, and have some pre-existing conditions including clinical depression, osteopenia, extensive tooth issues including a total mouth restoration necessary from a previous unrelated cancer. For me, I think it is reasonable to make life-style changes and live my life to the fullest without side effects (some of which may be late occurring and non-reversible. I understand the 5% difference in calculated recurrence risk and am willing to accept it. This cancer can recur up to 20 years later, and even with the AIs, there is no assurance of no recurrence. I am so saddened that I am unable to have a reasonable discussion regarding this option with two highly recommended and regarded medical oncologists. I expected more in terms of patient preferences. I am hoping someone here might be able to share their experiences in this matter. Thank you and wishing you all the best!

Hi! So glad I found you folks. I was diagnosed with Invasive lobular breast cancer (2.9 cm; HR+, HER-; Stage 2, grade 2; node negative) I had a lumpectomy and 20 sessions of proton radiation. I have an Oncotype Dx of 17, indicating a 5% chance of recurrence within 9 years on AIs, 10% without. I also had a Ki67 if 3, indicating a slow growing tumor. I visited a medical oncologist who immediately prescribed Anastrazile, and got a second opinion with the same outcome, actually being scolded for even considering non-treatment. I am 69 y/o, very active, and have some pre-existing conditions including clinical depression, osteopenia, extensive tooth issues including a total mouth restoration necessary from a previous unrelated cancer. For me, I think it is reasonable to make life-style changes and live my life to the fullest without side effects (some of which may be late occurring and non-reversible. I understand the 5% difference in calculated recurrence risk and am willing to accept it. This cancer can recur up to 20 years later, and even with the AIs, there is no assurance of no recurrence. I am so saddened that I am unable to have a reasonable discussion regarding this option with two highly recommended and regarded medical oncologists. I expected more in terms of patient preferences. I am hoping someone here might be able to share their experiences in this matter. Thank you and wishing you all the best!

My breast cancer oncologist wanted to put me on Tamoxifen after my double mastectomy in 2017, but I refused. My risk of cancer returning was very low. I wasn't menopausal yet so he wanted to put me on Tamoxifen. I read up about the drug and its risks for blood clots and causing endometrial cancer. I have been at high risk of blood clots since my early 20s and already suffered from numerous joint and muscle issues so I declined to take the Tamoxifen. In 2019 I was diagnosed with endometrial cancer which confirmed for me that it was good I hadn't taken the Tamoxifen. I made it to the 5 year mark and remained breast cancer free. Sadly I was diagnosed with a new breast cancer in 2024 when I was 7 years out. I'm still glad I never took the Tamoxifen, however I am pissed off that my OBG oncologist didn't even suggest I take an AI for post menopausal women after I had the radical hysterectomy for the ovarian cancer and tested positive for a gene defect that causes cancer. My ovarian cancer has returned 3 times since the hysterectomy and now I'm dealing with breast cancer again. I'm having chemo now and will follow up with 4 weeks of radiation later this summer. Once those are all finished I will be going on an AI because at this point it's my best chance of keeping any of my cancers from coming back, or at least stalling any returns. The lesson I've learned here is to research everything and be very vocal with your doctors. You have to be knowledgeable about your cancer(s) and treatment options and you need to advocate for yourself because doctors are only human and they do make mistakes. I won't go into the nitty gritty details, but 2 of my 3 oncologists have both made mistakes with my care and if I hadn't researched and learned about the particulars of my cancers I would be dead now. When in doubt research and get a second or even a third opinion. I am in the midst of researching new doctors now because I no longer trust or respect the 2 doctors that made potentially life ending mistakes with my care. Good luck to you. I hope you find doctors that you can trust and respect and find the right treatment plan for you.

If you have gone over everything possible with you MO and do your follow up which may be more now for now at least. I know the fear never goes totally away once diagnosed no matter what. Best wishes to you.

That fear does not seem to leave you but trying to eat healthier and getting a little exercise even going for a walk is helpful. We would take our dog for a walk even if was a short one it is something and we do low fat and low sodium all the time. DH is diabetic anyway so we were kind of used to being healthier for him already when I got dx.

I still have a place they are a bit concerned on my 'non cancer' side I had to do mamo and US on both about every 6 months for the last 3 years. Last year they decided it had not grown yet so let me go until August. At this point after a few years of dealing with more worry tried not to focus on it as much. Figure did not know the last time and could not feel it either first before needed a mx and all can do is trying to keep going.

If you have a good hobby or like to read try to distract your brain to something else when those thoughts come in. Hang in there.

@cosmocathy I was in a similar situation - diagnosed in January 2020 at age 62 (after taking HRT for over 10 years which could very well have been a contributing factor to the BC) which was strongly ER+/weakly PR+, HER2- ILC on one side and IDC on the other, KI67 was just shown on post-surgery pathology report as "<5%", oncotypes of 6 on ILC side, 11 on the IDC side. Surgery was BMX with immediate DIEP flap recon in June 2020 after taking Anastrozole for a little over 3 hellish months of side effects due to surgery delays during the initial COVID outbreak. After the surgery (no radiation or chemo was recommended) I declined to restart the AIs immediately since the surgery was major and it took me quite a while to heal from it. I saw the MO to whom I'd been assigned and who had prescribed the AI prior to surgery about 3 months afterwards and asked her what my recurrence/mets risk was with the AI vs. without the AI and she told me 3% with it, 6% without it. I asked her what testing would be done to monitor and identify any recurrence/mets. She told me the 'standard of care' was NONE unless I identified symptoms that sounded like recurrence/mets. I told her that I would not be going back on the AI which didn't please her at all and she was really pushy about trying to find one whose side effects I could tolerate - I'd already researched the side effects of the other AIs and decided that I would play the odds of not taking them given my stats. I also decided that there really wasn't any point in seeing her at all since I wasn't going to need a prescription, no testing/monitoring would be done and I didn't need the judgmental/pushy attitude. I thought about trying to find a more amenable MO but I have a good GP/internist and a good gyn at least so haven't prioritized that absent any symptoms and the fact that the majority of doctors follow 'standard of care' guidelines. When I had a lump (it occurred once on each side, first time around 18 months post-surgery and second time around 3 years after and was in both cases just fat necrosis) my gyn wrote the script for a bi-lateral diagnostic mammo and sono to make sure it was just fat necrosis. @maggie15 if you are in the NYC area I would appreciate it if you could PM me the name of your MO.

@vlnrph not clear what you mean by genetic counseling. They did run tests for BRCA and I believe other genetic mutations and I was told those were all negative. Although others in my family had other cancers I’m the only one who had BC. Yeah, you’re totally right that imaging can find all sorts of things that are largely benign. I was thinking more along the lines of blood-based tests rather than imaging but I understand those can also lead down a rabbit hole.

With regard to having both ILC and IDC I’m pretty sure I’ve seen it in a few other profiles over the years but it’s pretty rare. Lucky us 🙄

I had researched a lot prior to my diagnosis as I walked the road with my sister who ended up succumbing to Metastisis after in remission for 7 years. She was 1st diagnosed with St 3, had a lumpectomy with rads and chemo and was put on AI's. It decimated her health and immune system and she was never the same, always weak, never again vibrant. When the cancer came back full force, the chemo and drugs they put her on killed her almost immediately.d I am sorry this is long, but I really care about you and your decision moving forward.

In January 2024, I sustained a complete tear of my right shoulder muscle. I was in severe pain for months enduring PT to strengthen the other shoulder muscles damaged in the fall in order to endure the operation set for May 24, 2024. Just 2 weeks prior, I found the lump in my left breast. What a whirlwind. It was IDC w/DCIS. Stage 1, and appeared to have no lymph node involvement. For the next 3 weeks I took my time, shut myself in alone from but a few confidants, and poured over all the literature and books, and research and determined a path forward: Total mastectomy, with NO reconstruction, NO radiation, NO chemo (no matter what they recommended), and definitely NO AIs.

It was ER/PR+, I understood that when they both presented together (91-100% ER/PR) the better the prognosis and outcome. I knew about reconstruction and the complications they downplay regarding rejection, lifelong autoimmune damage, necrosis, and so many other complications. I knew about how many doctors are leaving the reconstruction field and are now calling themselves "deconstructionists" due to the vast majority of patients who years later after many health issues and scares need them taken out. I knew the prognosis of a lumpectomy and receiving radiation which can render irreversible damage to the heart and lung (left side), and that as a carcinogen itself can strengthen CSC for recurrence sometimes 10+ years later if not sooner. I knew chemo, a carcinogen itself likewise strengthen CSC's. Both of these are NOT always contraindicated but neccessary, however; I would have only conceded to their use by way of TRUE Integrative Naturopathic Oncologist, not this paliative stuff offered by most conventional oncologists and their centers who offer pain management and psycho therapies, but ones that know about metabolic, nutrition, off-label drugs, therapies, supplements, toxic load, lifestyle, etc.

I saw my mother, at 84, diagnosed with the exact same BC. She had a mastectomy like me, but they put an old women on AI's. AI's do long term damage to your eyes, brain, bones, heart, and vascular health as well damages your pelvic health rendering many women, even at young ages wearing depends. Because AI's are residual, the damage is permanent in the eyes, in particular the macula. She was on them for 5 years and in that time, she began to go blind. Estrogen is much needed for all these bodily process. There is wide recognition that "estrogen" does not cause Breast Cancer. Yet, they have everyone fearful that they got to take AI's to decimate their much needed estrogen in order to not get BC again. It is the type of estrogen that unmodulated gets onto the receptors that crowd out the estrogene that is much needed by the body that is the problem. At 84, a woman has nearly 0 estrogen.

My Functional Medicine Dr. immediately ran pertinent and valuable tests to help develop a protocol. I threw away all my cleaning products, plasticware, makeup, I had my mercury fillings replaced with compatible material to my body, I started to intermittent fast and still do so till today, I started a daily habit of aerobic and strength training, and resistent training exercise program, I started a boatload up supplements, plus a nutrition plan, I stayed active, yet learned to meditate and dug into my faith in Jesus Christ, and I removed myself from toxic relationships, and grew in others. I retained my PCP and Breast Cancer Surgeon. To both I gave them the book by Dr. Jenn Simmons, "A Smart Woman's Guide to Breast Cancer". I appealed to them to read it and asked if they would be willing to walk with me through this and try to understand the reason in "why" is am choosing this direction. Both have chosen to do so and they receive all the tests and protocols by my Functional Medicine Dr. My PCP was on board from the beginning and told me she would be doing exactly what I am doing if the shoe were on her feet. My Breast Surgeon is willingly following me, but it is much harder for her to accept fully the direction I am taking. Her biggest complaint is that I will no longer get a mammogram. They too are known carcinogens. It doesn't make sense to me that I would, in my body now weakened by cancer and healing from it with possibly CSC's just waiting to be strengthened to give them that energy from radiation. Instead, I get a QT Scan, FDA approved which can be learned about in Dr. Jenn Simmons book, or you can go on line. NO radiation involved. Gets a clearer picture than MRI and can distinquish between benign and cancerous findings.

I know this is a lot to read, but I feel often, women diagnosed with Breast Cancer hear these words "you have cancer", one of the hardest slaps in the face immaginable and all of a sudden you have to become an expert in cancer and its treatments because your life depends on it. You will be pushed into chemo, radiation and surgery. Yet, you do not feel confident that only these conventional therapies would take care of it. Many are stuck in that "deer in the headlights" moment of fear and simply do NO research or reading and find it more easy to just do as they say. For me, that would have been harder I suppose having seen both my sister and mother suffer greatly from these harsh treatments. My mom, fully blind at 94, of sound mind and body, wishes she could die. That is the effect becoming blind has been on her.

The tests my doctor ran were extensive and telling. My estrogen levels were low-below normal for my age but my pathways were near perfect. My progestorone levels were low too. However, tests revealed some important facts….MTHFR heter. which rendered my methylation of B12/folate/B6/and Biotin critically insufficient. My A1C was above normal. Copper and Zinc way below normal and ratio was also. But, here is what they found that seems to be THE THING that led to diagnosis. High Mercury and Aluminum in my body. Since then, after being on detoxification for nearly a year, the Mercury is gone (as are my cracked mercury fillings that I had been unknowingly grinding). Still detoxing slowly aluminum. While this is being addressed, I am discovery, through tests, not guesses, things that I am slowly correcting in my lifestyle choices….things that go in me, on me, and are around me. I don't know what the future holds. At 69, I feel I am becoming healthier than I have ever been.

So, going off AI's is something I would have no qualms about saying "yeh". But I would highly recommend you read "A Smart Woman's Guide to Breast Cancer". There is more to the story than what conventional oncology offers. There is so much more you can and probably should be doing to prevent recurrence.

I wish you well.

@mary9999, Ask your oncologist what the likelihood of recurrence would be with and without hormone blockers. If an Oncotype DX test was done to see whether chemo would be recommended for you that information would be included in the report.

Aromatase inhibitors statistically cut the rate of recurrence by 50%. For example, if the chance of recurrence were 10% then an AI would reduce it to 5%.. Looking at it another way there would be a 90% chance of no recurrence without and a 95% chance of no recurrence while taking AIs. These are numbers which apply to large groups rather than individuals. Some people who take AIs have a recurrence anyway.

Often people who take AIs just have minor side effects but many of us in our 70s are already dealing with bone loss, arthritis and other conditions which can be made worse by them. Quality of life often becomes more important. It is a personal decision that each of us has to make.

Oncologists push anything that might reduce cancer recurrence since that is their job. Ultimately it is up to us to choose. Good luck with your decision.

First of all, there's no such thing as "grade 4." Grades are 1, 2 or 3, describing the relative aggressiveness vs. indolence of the cells sampled from the biopsy and then confirmed post-surgery—depending on mitotic rate (how fast cells divide), tubule formation (more is better), and differentiation. They do not change. Stages (designated in Roman numerals I through IV) are determined by tumor size, lymph node involvement and evidence of spread if any.

Second, if it's not "in situ" (DCIS or LCIS) it's "invasive." Most breast cancers are invasive carcinomas, either ductal or lobular.

All the literature I've read about Kisqali in early stage ER+/PR+/HER2- breast cancer indicates it's given only to Stage II or III patients—not I (and certainly not IA, i.e., smaller than 2cm with no nodal involvement). Why are they even talking about Kisqali in your case? Might your path report have said "Stage II," rather than "Grade 2?" (Or both)?

@mary9999 - It’s completely understandable to feel confused, as these reports can be really overwhelming to read. Grade and stage are often mixed up, but they mean different things. Here are two articles from our main site that may help clear things up:

https://www.breastcancer.org/pathology-report/breast-cancer-grades

https://www.breastcancer.org/pathology-report/breast-cancer-stages

Hope this helps. We're all here for you!

The Mods

Hi @mary9999, I’m glad you got your recurrence statistics from the oncologist. A DEXA scan would provide additional information about the strength of your bones. The direction in which you are leaning sounds acceptable to me but others might disagree. Make a decision you would not regret no matter what happens.

I don't have my crystal ball and of course none of us wants to die of beast cancer but it may not happen again

thanks Maggie