Looking for research re: taking AI drugs vs not taking them

@peggydobbs Thanks for your info! I'm 72, newly diagnosed, stage 1a ILC. Clean lumpectomy & 5 day radiation starting next week. I would need to take tamoxifen due to my already weak bones, according to oncologist. My question is, even if I take tamoxifen & feel that I'm "tolerating" it ok, I could still end up with serious side effects like blood clots or endometrial cancer, right? But by then it would be too late & the damage would be done. So, it feels very unnerving at my age. Taking the meds or not taking them both feel risky.

I have been taking anastrozole for almost 2 weeks and, so far, have no side effects at all. I found other research that shows it also reduces the risk of several other cancers such as ovarian and lung cancer. I am guardedly optimistic that I will be able to tolerate it well and, hopefully, keep a recurrence away. If you’re on the fence, like I was, and don’t want to someday regret, not taking it, please go ahead and try it. I’m glad that I did, and will post if I have any issues with it in the future. It reduces my risk of recurrence from 6% to 3% in 10 years. Low risk, but it also reduces your risk of a new cancer in the other breast as well as other cancers.
Happy Thanksgiving to all!

I tried entering data on this web site - it was very interesting. https://breast.v3.predict.cam/tool They told me chemo would not affect my outcome & when I entered this data with & without chemo - it was the same. I don't know how accurate this is - but it sure made me feel better! I did finish my 5 years of AI. But turned down 10 years. I was 62 when diagnosed.

If your personal risk of recurrence is 1%, and if taking AIs reduced this risk by half, to 0.5%, then AIs might not be worth taking. However, if your risk is 18%, and AIs reduce this risk to 9%, to me, it makes sense to take AIs.
There are tests of the tumor itself that estimate risk of recurrence--e.g. Oncotype score plus others whose names I'm not familiar with.
I suggest asking Med. Onco. what your own risk of recurrence is--and then ask how s/he knows, i.e. what tests have been done. BTW, I'm over 80 but still my risk of recurrence was high enough that I was put on a 2nd anti-cancer medication.
You shouldn't assume that because of your age, your cancer isn't invasive.

I'm 84. I ended treatmentfor breast cancer4 years ago. I didn't take AI and blood work shows no reoccurance.

I have just been diagnosed with early stage BC. My tumor is 5 mm, ER+ 80% 2+, PR 90 3+, ki67 - 15 HER2 negative. MRI showed no lymph involvement. I just received a word that I am BRCA negative and now just waiting to schedule lumpectomy. My surgeon said she is not going to even do a lymph node sentinel check at this time because the “tumor is so small.” My question then is about endocrine therapy. I struggle daily with my physical and mental health already due to autoimmune and menopause. I already have very little energy, and depressed and have brain fog and I am extremely scared about what effect endocrine therapy is going to have on me. I understand the importance of it, but I’m weighing risk versus reward at this point. I’m 62 and neither of my parents lived past 67. If I had metastasis in 10-15 years I might actually be ok with that. Predict says my chance of metastasis are very low but it’s still really scary. I also understand I can try and then stop if I have bad side effects but I would like to hear some stories from people who opted out completely and are still doing well. Thank you!

Hello @sdbonniea123,

I combined your discussion with an existing discussion on whether to take medications or not, titled:

"Looking for research re: taking AI drugs vs not taking them"
- https://connect.mayoclinic.org/discussion/research-taking-ai-drugs-vs-not-taking-them/

Here, you can meet other members talking about when to take or not take medications and how to make an informed decision.

@kcalhoun So glad the weight issue cane up! I do a lots of research as well.
Two issues I can’t find enough definitive research on, is fat/weight, and, actual risk of dcis with a papilloma in the peripheral breast (my type) vs central nipple area. It seems papillomas in the outer areas of the breast tend to come in multiples whereas papillomas near the nipple are usually single. Papillomas are usually benign but often aligned with ADH, which can be a precursor for cancer. The oncologist agrees. But the answer seems to be, just keep getting scanned. I keep hoping new research will come out with better outcome info. But this is one reason I chose to do tamoxifen.

The fat/weight issue - it just seems odd that knowing that estrogen is present in fat that that wouldn’t be a super high risk for hormone positive cancer. And as you said, AIs tend to cause weight gain, with tamoxifen not far behind.
“Lower estrogen directly decreases Resting Energy Expenditure (REE) and total energy expenditure.
Estrogen deficiency causes fat to shift from the hips and thighs to the abdominal region (visceral fat), which is metabolically less active and linked to insulin resistance.”
3 1/2 years into low dose tamoxifen I’ve started gaining weight, partly stress eating over family medical/care issues. And having a terrible time losing it. I believe its becuase my metabolic rate has tanked. If fear of scans is scanxiety then I’m feeling bc pfatxiety! I haven’t put on enough weight yet to consider GLP-1 but I’ve got to stop this progression.

@celestebradham hi - I’m 62 also and just newly diagnosed. May I ask about your stats? (Size, type etc?). I’m considering skipping endocrine therapy. But also I think even two years on it (kudos to you!) has to have given you at least some more protection than you had before! ❤️

@triciaot Hi! I'm sending my positive waves of healing to you from afar! < 3 Just one finer point to put on this. It isn't just that the estrogen "is present in fat." The adipose (fat) tissue is PRODUCING the estrogen, making it the primary source once the ovaries stop. The enzyme in fat is aromatase, which is the thing you're trying to block with AIs. Significantly overweight women therefore have more circulating estrogen in their body, which then can stimulate the growth of hormone+ breast cancers. I'll repeat my warning that for those with a LOT of extra fat in the midst of a breast cancer battle, AIs may be the way to go to stop that process. I went the GLP-1 way because I couldn't tolerate any of the AIs. And that one more significant thing to know - how much is that AI going to reduce your risk specifically. I ain't living a life of misery in exchange for a 1-2% risk reduction. But for other women, the risk reduction is totally worth it. Not sure what yours is? Go back to those Predicts reports with your unique profile in there. You will see it clearly. Prayers for everybody!!! < 3