Seeking Alternatives to Hormone Blockers

I have stopped taking the pill for almost 3 months . I can sleep better, my joint pains are better but not completely gone . Lost weight and feeling more active . Not going back no matter what happens

Thanks for sharing Hedy. Are you doing any alternative treatment (nutrition, acupuncture, etc)?

Hi Lia… I took Exemestane for 3 years . I did no chemo or radiation after my mastectomy to remove my right breast. The pill was attacking my joints while I did walks, played tennis and did my stretches . In the beginning I tried to manage it with all of what I mentioned above but as time went on instead of getting better got worst to the point which it was preventing me to be active thats when I decided to stop the pill . To answer your question , I’m taking the vitamins, eat healthy and stay active . To stay positive is the most important part.I much rather have a quality life than longer life :

Thanks, Hedy Wishing you all the best💜

Bak in 2016 I was on one AI for 3 months and another for 1 month before declining/stopping AIs. I didn’t fully understand at the time that the ONCOtype DX score was reliant on AI… but even so, I had done the math and my score of 2 TWO — if doubled by not taking AIs and doubled again for good measure out me at 8%, or in the gen pop area. Both Onco and Dr were on board… I was moving between Ireland and the USA (living in both places) and might have tried a 3rd AI or even anti-depressants had I been consistently in one place. I was 60 then, and chose quality of life (the AIs made me wiggy). 8 years later (last year, I am nearly 70) we found metastatic breast cancer (bones, lymph nodes) entirely by accident (new Dr suggested an ultrasound as a baseline — in the end I had 2 mastectomies) where we discovered one of my implants had ruptured, but was held in check by my body. In 2016 I looked at the other data that showed AIs stopping working in 50% of cases, and also only being 50% effective…. check out the stats for yourself. Stats have limited use as shown by my Oncotype DX score of 2 and where I ended up. What I know now, that I didn’t really process, is that cancer can exist/return regionally (remaining breast tissue and lymph nodes) and even though I did everything suggested: manual exam by Dr — that didn’t catch the ruptured implant, just saying — and what I would push for now are to start with an MRI of your chest/lymph nodes and even see if they would do a full body CT or even bone scan… every few years. Don’t know if this would be covered by insurance, but this is what I would push for. As for where I am now — on the third AI letrozole, along with 600mg Kisqali — 10 months treatment, both bone scans show reduction of lymph nodes to more than half (4mm) and healing activity in bone (sacrum and T4). Managing side effects well (no nausea, but hair thinning and skin affected). Drs are ecstatic. I soldier on, but more tired than I want to be. Need to start lifting weights. I do prioritize protein at breakfast and again at lunch and dinner, with lots LOTS of veg, and beans and greens. have been using a CGM to keep my blood glucose level, and I think that has helped more than anything. I didn’t start using the CGM for the cancer but for another trajectory I was on to make better choices — have lost 50lb and only have another 20lb to go but am on hold for now. Sadly I had to give up any supplements I was taking (that contained mushrooms or dandelion) as the Oncology pharmacist nixed them, but the upside is that my life is simpler. I now try to get all my nutrients from whole foods. Best of luck to you on your journey. There is no crystal ball. 😬

p.s. as my weird luck would have it — I seem to be that person who makes up the numbers, as in 2-3% failure for DIEP flaps (yep), 10% chance of cancer at first cancer in 1996 (yep) or Oncotype DX of an unheard of score of 2 (yep, me again)… we found I was metastatic MUCH EARLIER than if we hadn’t looked, and I had waited for my lymph nodes to grow to the size of a citrus fruit!!! I try to remain grateful even as taking a targeted therapy is a pain in the puss.

Jenny, thank you so much for sharing your story. I appreciate your recommendation to have an MRI or even a full body scan. I actually thought an oncologist would do that after recovery from surgery- it seemed logical to me. But doctors consider the stats and proceed accordingly. I get it. I feel like there’s this epidemic of bc they are just trying to stay ahead of. My more cynical side sees us on a conveyor belt being sorted in to different bins according to our oncotype numbers. I have to say based on score of 2, I would not have done the hormone blockers and probably would not have agonized much about it either. Sending you healing thoughts and wishes.

Good luck Jenny… All I have to say whether you take the AI or not the chances are the cancer might come back . From readings that I’ve done and the research, taking AI decrease the reoccurrence by 5% . Could be that my research is outdated may be . I believe if you try to have a healthy life less stress about reoccurrence which I think is very difficult to do you can bit i t even if its for few years But if talking the pill gives you some kind of relief you should definitely take it . My side effects were bad & I’m an active person . Mind you I tried different pills until finally my oncologist told me they’re all the same . I wish you all the best Jenny… If I can live another few years pain free I’ll be very happy .

Why would you? I guess you could have an oophorectomy (removal of your ovaries). But, I would still do the AI. I'm speaking from experience. I did AI for 5 years after my chemo, 14 years after my BC diagnosis, I have MBC with extensive bone metastasis (too many to count) and lymph nodes. Now, I've been on AIs and CDK4/6 for 8 years. QoL is important, but so is longevity. I'm running out of AIs, chemo is next. Best of luck!

Good luck Virginia…. Longevity with quality is my mojo . Wish you the best

Treatment decisions can feel overwhelming, and it's completely understandable to explore all available options with your healthcare team. Many people in this community have navigated similar questions about hormone therapy alternatives, and sharing experiences here can provide valuable perspectives as you discuss the best path forward with your oncologist.