Aromatase Inhibitors: Did you decide to go on them or not?

I’m 60 and just diagnosed. I have such a huge family history of breast cancer on my mother’s side. For this reason, I am leaning towards a bilateral. Everything I have learned about LCIS, states that a mammogram can not detect it. It’s usually detected through a biopsy or surgery. If you had to make the decision again, would you have opted for a lumpectomy or bilateral?

Welcome, @kel6022. In addition to this question you directed to @cindylb, I think you may also appreciate joining these discussions:
- LCIS and double mastectomy https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/
- Bilateral Mastectomy or not https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

My doctor okayed alternating days but I ended up doing full dose anyway. The Femara insert states that 20% of the recommended dose may be effective. The half life would indicate alternate days would be effective.

The real question is, what side effects exist that are not caused by estrogen deprivation? Because no matter what the dose is, if it effectively removes estrogen produced by the adrenals, side effects would be the same.

I had lumpectomy plus lymph node removal for IDC. Margins & lymph nodes were clear of cancer cells. I’m undergoing radiation therapy now for 3 weeks. I was taking a low dose of hormone therapy before diagnosis, which I then stopped.
I’m 71 & don’t want to take hormone suppression drugs. My question is since I’m no longer getting the hormones from the hrt, is the chance of metastasis less likely? I appreciate the great information on this site. Thank you!

What was your Oncotype score? Stopping HRT does not reduce estrogen levels below detection level because adrenals continue to produce estrogen. Many of us have cancers that were fed by estrogen, and had never done HRT.

I would need more information on your tumor and tests to express an opinion but for me and many others I know, side effects were tolerable and changed over time, often for the better. Of course I respect the experience of those who did suffer significant side effects, but even then, after weeks or a few months, those side effects may (or may not) improve.

@cadunkin, I moved your message about "being on the fence" about hormone therapy to this existing discussion so you can review the previous posts and connect easily with other members talking about:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

@windyshores answers your specific question about stopping HRT and reducing the chance of metastasis.

A discussion with your oncologist can help to understand your personal risk of recurrence. Not all women experience difficult side effects from hormone deprivation therapy. You might also ask your oncologist about the differences between the drugs and the most common side effects, dosage, etc.

I received my Oncotype DX DCIS score. My Radiology Oncologist just called me & said my score was a 39. I asked for a copy of the results & when I received them it said my score was a 28??? My question is, was the doctor wrong in telling me it was a 39 OR do they add in something she didn’t mention, not on the report that would change the actual result giving you a different number? This isn’t the first conflict of info I’ve received from her so my trust is low but giving the benefit of doubt I thought I’d check to see if I’m missing something that would change the numbers. Does anyone have any helpful information?
I’ve requested an appointment with a different facility, for nothing less than a 2nd opinion & at most to change doctors entirely. I’m really not comfortable with conflicting information on something so serious that impacts decisions on treatments.

I am concerned about effects of Letrozole on the heart. Have any of you been told to have a CT scan of coronary arteries and get a CACScore prior to beginning an estrogen blocker? I heard this on a webinar I was watching but my doctor didnt mention it.

I’m also concerned about the effects on the heart with the AI’s. I proactively asked for a Calcium heart score CT scan before accepting any meds. It showed I do have some problems. Insurance doesn’t pay for this test. I paid 130.00 & well worth it! I have a horrible paternal family history of heart problems so I’m being very careful on deciding on which med to take. On top of that I also have Osteoporosis which can also be effected by the meds. Reading on others experience, research available & the listed side effects that are possible has me freaking out. What cures one issue can lead to other major problems. I have scheduled an appointment with a Cardiologist to get an opinion on which med may be best for me with the lowest risk to my heart. My appointment is next Tuesday so I’m hoping he can give me some recommendations on what is safer & what to absolutely avoid. My feelings are that to void future cancers by taking the AI’s doesn’t do you any good if your heart is damaged in the process leading to less “quality” of life. We can research & listen to the medical advice to help us make the best decisions for our healthcare. I’m trying to be proactive on checking everything else to decide & try to avoid future problems. At least I’ll feel like I did my best in making my decisions when all is said & done.

You are absolutely correct. That discrepancy is frightening. Go for that second opinion and good luck!