Tamoxifen vs. Ovarian Suppression & AI
Hello! I am new here, newly diagnosed and trying to navigate all this.
I was diagnosed with ILC in June 2024 and opted for a bilateral mastectomy, right breast was healthy. Currently with tissue expanders, waiting for implants in a couple months.
Stage 1A, tumor was 1.7cm (grade 2), high ER+/high PR+, HER2-, Ki67 15%. Genetic testing was all negative. No chemo (oncotype was 13) and no radiation. No lymph node involvement.
I am almost 47 and on tamoxifen (no SE). I keep reading that AIs are better and debating if I should suppress ovarian function and go on AI instead of tamoxifen. Onc is amenable to that but wasn't overly excited about that course of tx. Onc does not rec ovary removal even though I am debating it. I keep reading about reoccurrence years down the road and that is scary especially I am/was early stage (seems like that does not mean much in this situation). I am not planning on having kids - just trying to figure out the best course of action for the best long term prognosis.
Comments
-
@myhatanner, welcome to the community! We're happy you found us, even though we know it's been hard.
It's great that you're actively looking into your treatment options and determining what's best for you, and we hope you'll hear from other members soon about their own experiences and sharing support. In the meantime, here are some articles from our main site that might be of help:
Hope this helps! We look forward to hearing from you again soon.
The Mods
0 -
Hi mayatanner,
Obviously everyone is unique in how they experience BC and the treatment, so my experience with BSO could be totally different than what you experience, but for what it's worth, I am 48 years old, had a left breast mastectomy, full breast and lymph proton radiation, and then a BSO on March 4th, with the intent to start Letrozole tomorrow. I have had very, very, very extreme side effects from the BSO, to the extent that the impact to quality of life (if it stays at the current level of misery) has made me regret the choice to have a BSO as a pre-menopausal woman.
We all have different metrics for measuring quality of life and pain/discomfort tolerance, so if it helps to contextualize my experience, I've finished five 100 mile races and they involve a lot of suffering. Radiation also has a fair amount of discomfort. I can honestly say that I feel better after a 100 mile race than I do right now and that I would rather repeat radiation than feel this way.
That being said, I think it's really important to do research on whatever treatments you are considering and look at statistics for reoccurrence, both relative risk and absolute risk, which your MO should be able to provide you with. Good luck with choosing a course of treatment!
1 -
Hi str0bela
Thanks for sharing your experience. I have been holding off, my frayed nerves have calmed a little, and I am processing a bit more and feeling a little less eager to just get rid of all my plumbing. I am sorry your experience has been so hard. I hope that you can find a little relief once things "normalize", hard enough to go thru BC and then to manage other severe side effects.
0 -
Thanks for this post. I was diagnosed with left breast ILC in 2023 and had bilat mastectomy and SLN. I had no positive nodes, 2 tumors on the left and none on right. I had +margins unfortunately, but they did not recommend RT. Oncotype was 10 I think, so no chemo. I planned to do BSO but MO recommended I hold off on it until I was on lupron for a year to see how I felt. She recommended Lupron and exemestane, saying that there was a “slight benefit” to that over tamoxifen (i think as per SOFT TEXT trials), but that if I had intolerable side effects we would switch to tamoxifen and it was an effective option. Like you, I have read so much about ILC camping out and then showing up in 10-20 years again, and so at first I just wanted to be really aggressive and throw everything at it. I didnt care about side effects. But it’s funny what has happened as time has gone on, as I’m sort of just adjusting to life and believing “maybe I really am going to live and be ok”. Hahah. Now all of the “luxury problems” that I didn’t care about before are starting to get into my thoughts- like wouldn’t it be nice to not have hot flashes like this (they really are very uncomfortable and interfering)? Or vaginal dryness- which takes a lot of fun out of my relationship? Or to not have to walk in pain like a 90-year-old woman for a few minutes every time I get up from a seated position? Also, my first bone density was perfect, but in just 18 months of this treatment, my bone density decreased 11% in one area and 7 in others. I am still within the normal range, but yesterday the MO said I will repeat the test in one year and then probably consider starting prolia if i fall into the osteopenia category. And I’m glad that they have something to help with this problem- but I really don’t want it to be honest! I just want my own bones. And my own vagina. And all of the other lovely things that estrogen used to give me like better focus. I just read an article in a medical journal this morning about prostate cancer that said there was some benefit to survival in shortening the testosterone suppression. Probably because it reduced other morbidity such as cardiovascular disease and dementia in the future (assuming prostate cancer is not the cause of death). I know there is concern about that for women on estrogen suppression- increased risk for heart disease later. And believe me, I have taken care of patients with advanced ILC. And I don’t want it. So I am thinking of switching to tamoxifen next year if the bone density is osteopenia- instead of starting prolia. I think she said I could do Lupron and tamoxifen. Or just tamox alone. So I guess we’ll have to see. In the meantime, I’m going to try to do all of the things to reduce the other nuisance symptoms. I am using vaginal estrogen. And she gave me a prescription for Veozah. Which I might try. Again, sorry to complain about luxury problems. I rarely post here for this very reason. But I was glad to see your message because I’ve really been thinking about the same things.
good luck to all of us. May the odds be ever in our favor
1 -
I also want to add that aside from the achiness when I first get up to standing, the hot flashes, and vaginal dryness, I have no other problems with AI. No severe joint pains, no weight gain, no moodiness, no hair loss. I know a lot of people have some very severe side effects. But I am grateful that I have not. Another reason I feel bad to even complain! .
0 -
Missace,
Reading your story was like reading my own. My margins were very, very close but they opted to not do RT. That makes me very nervous. I don't feel that you are complaining about "luxury problems" and I am sure everyone else would say the same. This is scary. Too many unknowns. Do this, do that and just hope and pray that this will be a one and done. I haven't had any crazy side effects from tam but I have had some that have been annoying (horrible leg cramps, hot flashes, face gets flush all the time, I lost quite a bit of weight on it and it has made me so hungry I can barely afford to feed myself). My 1st and 2nd MO both didn't think getting a BSO would be beneficial. I am giving myself a year and if I am still full of anxiety that my ovaries will betray me then I may try the chemical induction and see how I handle that. Now I worry on how would I know if this goes elsewhere? My MO said bloodwork is what they use to monitor, I hardly feel that is sufficuent as some cancers will not affect bw. Every ache and pain sends me into an anxiety spiral. Like you, and many others, I just hope that this will not creep up again decades from now. Positive thoughts...positive thoughts...positive thoughts.
1 -
Yes postive thoughts and vibes coming your way. We can come here to spin sometimes! But otherwise- lets just assume its all going to be just fine!
Keep in touch!1
