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

Don’t be afraid to get a second opinion. I had a second opinion because I was getting the “run around” from my surgeons office. It was the BEST decision that I made. I saved my life and my sanity. I had people questioning my doctor’s and his nurses processes. I wanted someone else to take over and make those decisions for me, but ultimately, I had to make those decisions myself. They gave me the choice of 2 hospitals and I took the one who could get me in the soonest. That was UW Health in Madison. The minute I made that decision, I was contacted by the Nurse Navigator and immediately I felt like I was being treated as a patient and not an advocator for myself, which by the way, felt so much better. Going into UW Health also made me feel like a patient and that my life and my time was valuable. They showed me the imaging of my breasts and walked me through the process. The doctor I was seeing didn’t show me any imaging. I cried during my appointment and they comforted me. BEST decision I ever made. Trust your instincts! If it doesn’t sound right to you, tell them you want a second opinion!

I thought this was unclear:
"No consensus was reached on the clinical utility of these subtypes for selecting the most appropriate chemotherapy treatment — two thirds disagreed, while 13% agreed and 17% felt neutral."

The Oncotype Dx does tell you whether chemo is of benefit, just to clarify. In my experience some docs rely totally on the Oncotype and some (one out of 4 in my case) also took post-surgical pathology into account.

"Oncotype DX is a test that predicts how likely breast cancer is to come back after surgery and the likely benefit of having chemotherapy. The test gives a score between 0 and 100, and people who score above a certain number are more likely to be offered chemotherapy."

We've mentioned the OncotypeDX gene testing for breast cancer patients on this thread before (and how some doctors still are unaware of exactly what the test is designed to help with) and I saw this article that I found interesting. It shows that the test is increasingly shown to be helpful. I found it interesting that more doctors agreed on that test as reliably-valuable than patients' immunohistchemistry.

The reason I found that interesting is that OncotypeDX are sometimes very different from what doctors might assume including a high risk of recurrence for a patient with a grade 0 lumpectomy and negative lymph node biopsies. And a low risk of recurrence for a patient with tissue from a Stage 4 tumor and some positive lymph node biopsies.

I mentioned once before that Oncotype has, on several occasions, had to notify the submitting physician that a tumor classified as non-invasive looked invasive to Oncotype. [I was told that there are some telltale markers of cells very likely to be or become invasive that can be missed by biopsy.]

I hope that everyone with a newly-identified breast cancer that fits the genetic testing parameters can get the test(s) done. Note that physicians disagreed on the value of the test in selecting chemo....which is totally outside the scope of the OncotypeDX anyway. So clearly there needs to be more physician-education about which tests are available, to do what, for patients to be informed of options.

Here's excerpt and link to article:

"Misconceptions Remain on Gene Signature Use in Breast Cancer

'Overall, more than 70% of respondents agreed that identifying tumor intrinsic subtype via gene expression profiling was important in making prognostic and treatment decisions; however, a consensus was not reached on the use of immunohistochemistry.

In addition, most respondents (76%) agreed that identifying breast cancer molecular intrinsic subtypes had clinical utility for prognosis in early-stage HR-positive disease and for identifying patients for whom chemotherapy can be safely avoided (75%). However, in both cases, about one quarter of respondents either disagreed or felt neutral. No consensus was reached on the clinical utility of these subtypes for selecting the most appropriate chemotherapy treatment — two thirds disagreed, while 13% agreed and 17% felt neutral.'"
https://www.medscape.com/viewarticle/973465

My dermatologist suggests people on chemo add biotin and zinc to their regime to help prevent hair loss, or help it regrow healthy and faster, if shed. [I'm not on chemo but take Biotin Forte anyway as it's good for hair and skin. ] There is a plethora of new shampoos designed to help clean out hair-product build-up from hair follicles that give new hair growth a better start. There is the amazing Dry Brush which I wouldn't shampoo without as nothing is gentler. And some interesting new small ionic scalp massagers that are stimulating. Weleda makes some herbal shampoos that have a cult following for being good for hair and scalp. There are a lot of new peptide-based scalp lotions that look promising, building on the success of eyebrow and lash products. I totally get 'hair concern' so hope this helps.

I took tamoxifen for a number of months and felt its estrogenic effects almost immediately. Fear of possible resultant endometrial polyps or cancer or DVT scared me off the drug. I have been taking anastrozole for a few months and find the side effects less noticeable. For me it does seem to affect hair texture and may cause some insomnia and depression, although the latter may be more related to aging and having BC in the first place. I sometimes skip my dose and often contemplate quitting the drug, but for now I take the pill because I don't want to have to confront this disease ever again. Unfortunately it only reduces that probability by half. I would suggest that the younger you are the more important it is to take an estrogen blocking precaution if you are ER+ because BC is statistically more aggressive in young women and you have more years for possible recurrence.

There’s nothing wrong with acknowledging your feelings. You should have seen the look on my surgeon’s face when I told her I would miss my hair more than my breasts. I ultimately did not need chemo, but I did have hair loss with the AI. A Swiffer in every bathroom and cleanest rooms for the last 5 years…

I'll send by the private message option in a few days. Just have to find them again. I don't want to clutter this thread or inadvertently start a new topic.

None of my friends had trouble with anastrazole. Forums are creating what you call "terror," because people with side effects post. I sympathize with them because I am sensitive and even intolerant of many meds.

Keep in mind that with this hormonal drug, it takes 7 days to reach steady state. And because side effects are mainly from hormonal changes, which I believe have different effects over time, I observed that side effects did evolve. But over a long period of time.

There are options to take a partial dose by alternating days. The Femara insert says that 20% of the normal dose is effective. My doc said I could take it every other day to reduce side effects. However I don't really understand how that could be, since if the med is effective enough to eliminate estrogen, the side effects would be the same, regardless of dose!

Anyway, I would try to focus on the positive benefits of anastrazole and the fact that many many women tolerate it just fine- with all due sympathy for those who don't.

Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

Just for balance, I will again say that I took letrozole for 5 years with little joint pain and found it very tolerable. I miss it, because it made me feel secure!

I am sorry for those who suffered on these meds but for others reading this forum, many of my friends also did 5 years relatively comfortably.

We all have different risks and have had different cancers and treatments. And some of us do want quantity of life versus quality to be around for our kids! So motivation varies.

I tried generic anastrazole first and reacted immediately to the ingredients. This is a sensitivity and different from a side effect over time. I switched to letrozole and then to brand name and was fine. Exercising 45 minutes minimum helped what few pains I had, but exercising for less than that tended not to help.