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

You might want to do a Breast Cancer Index test which tests the effectiveness of aromatase inhibitors for you. It actually is used to help with the decision whether to continue after 5 years but still it might help you. The various tests, Oncotype Dx, Mammaprint, Breast Cancer Index and Prosigna all seem to have different results for the same individual. I have had all but Mammaprint. Oncotype Dx had me at low risk (lower than you) but the others had me at high risk. However the BCI showed no benefit from AI's, specifically after 5 years but presumably earlier (I completed 5 years of Femara).

I already had osteoporosis when I started Femara and yes it got worse. The first year there was a dip in bone density then bone loss went back to the normal rate. I should have been on a med but for various reasons docs didn't put me on anything for bones. I am now on Tymlos.

The side effects of AI's are overblown by the Internet because people who don't have them tend not to post. I think it is distressing that so many are discouraged. I found that as long as I walked 45 minutes, the joint pain was fine. Clearly reducing estrogen has effects over time. Hot flashes happen at first but for me faded. For me they really were not bad at all.

The BCI folks told me that their test measures things differently from Oncotype. They compared it to counting number of cars versus speed. I do think that the Oncotype is useful in showing that an AI can nearly halve risk. With a low Oncotype that may not seem like a huge benefit but I felt 3% was well worth it, and in fact, the other tests consider lower scores to be high risk.

I am very familiar with this discussion. I was diagnosed with Luminal A (Stage 1A) IDC last summer, had a lumpectomy followed by whole breast radiation. The radiation brought my same breast recurrence rate down to 1.7%, improved slightly to 1.3% with hormone adjuvant therapy. My Oncotype score is 8, estimating distant recurrence to 3% with an AI or Tamox, or 5-6% without. Because I have progressive osteopenia, I opted for tamoxifen. After taking a lesser dose for 4 months I started to experience very debilitating joint pain, which affected my gait and my yoga practice, as well as horrible night-time leg cramps and depression. I also feared both DVT and endometrial thickening. I stopped the tamox last week. As a very active and trim 71 year old, I wonder if the benefit of taking an anti-estrogen drug for 5 years outweighs its toxic side effects. I also understand that estrogen positive BC recurrence stretches beyond 5 years. Here's a good article: https://www.verywellhealth.com/late-recurrence-of-breast-cancer-4766608 I have an appointment with my by-the-book oncologist and another one for a second opinion with a breast cancer specialist to discuss my options. Will I take tamox again, this time in the a.m. as opposed to the p.m., or try Armidex/anastrozole? Very possibly. In the meantime I am changing my diet to support my immune system. Anti-Cancer: A New Way of Life is an inspiring book on how diet can reduce cancer risk.

For a BC diagnosis everyone should consider a change in diet. The diet I chose is from drmcdougall.com. Search for his articles and videos on cancer, breast cancer and women’s health. I am also using mycotherapy which is mushroom supplements. The diet and mushrooms strengthen the immune system which is very important. Also doing exercise and sunshine to keep bones strong. Good luck.

Thanks for the thought-provoking replies. I may, stress may, reconsider my decision not to take hormone therapy. I reread the biopsy done after surgery in October, '21 and see the word micropapillary. I did get a second opinion from a different oncologist who suggested trying AIs and, if the aide effects are too uncomfortable, discontinue them. Will see original onco this Thursday and get more info about the carcinoma. [He never really discussed it, just rushed into which AI he wad prescribing. We have communication issues..meaning he has an agenda and probably not best doctor for a proactive patient who wants to know options and variables to make the right decision that she has to live with. The surgeon is referring me to another onco, a younger female.]

For what it's worth, I learned a lot an endocrinologist about both breast cancer and the drug choices. Better yet, he has dozens of patients who came belatedly to him for osteoporosis. IF I do end up taking AIs, I'll work with him to try to prevent or slow down osteoporosis which truly scares me a lot. I don't have local support team (cancer was discovered 2 years after I'd moved to Asheville where I knew no one, after leaving a decades-long relationship. Just in time for Covid lockdown and the related virus scares. I wish I'd known a genuine psychic to tell me what was coming, lol.] Sailing and physical independence are critical to my life and; probably mental health in subtle ways, so the osteoporosis worry is a big deal. For what it's worth, the endocrinologist suggested I ask the onco about raloxifine as it's a SERM and doesn't deplete estrogen. I realize that this is all a work-in-progress and we are probably all taking the best path at each step of the way. Everyone's experiences here have helped more than I can explain so thanks to you all.

@windyshores I'm rethinking how much I can/should rely on the OncotypeDX 3% risk of recurrence if other genetic test providers come to different risk analysis results using the same tumor tissue. The big issue, in a sense, is that whatever my risk was before the tumor, it clearly wasn't zero as the tumor found some way past my immune or genetic systems. I also have the genetic marker for heart disease and stroke (runs in the family) and cannot take statins to reduce my high cholesterol so the coronary issue and DVT issues were/are a concern with the SERMs and AIs. I hope diet and exercise help as I've been working hard on that since the 'big surprise' of the biopsy result.

@callalloo the numbers on the various tests weren't drastically different but one test will say a 5% risk is low and one will say it is high. Just to be clear, Oncotype DX is for years 1-5, and says whether chemo is needed, and Breast Cancer Index was studied for years 5-10 and says whether extended anti-estrogen meds are of benefit.

AI's aren't known to cause DVT's and my cholesterol did not go up. At all. I had osteoporosis already when I started Femara. Seven years later I had a fracture and am on Tymlos but if I had started a year earlier I would be fine, and if I had been taking Reclast with Femara I would have been even better. In fact, Reclast and Femara together are strong protection because Reclast is used to keep cancer out of bones or for treatment when cancer is in the bones.

People seem to go through so much angst about starting aromatase inhibitors. I think this is where the Internet really does a lot of harm. Of course some people have bad side effects- every med causes side effects for some. I did fine and so did the 4 friends I know who were on them. Some had no complaints at all. I would go ahead and try one. You can start alternate days if you prefer, per my doc.

That difference in risk, basically 3% versus 6% is actually the difference between low and high risk on some of the other tests. But yes, every woman has a one in 8 chance of getting breast cancer in the first place. That is different from the risk now that we already have it, because now stage 4 spread is a possibility.

@callalloo
The decision to take an AI is a very individual and stressful decision.

Similar to you, I was est.+, prog.+, HER2-, but Stage II. I had two positive lymph nodes. Treatment plan was 6 months AI first (research study), lumpectomy, chemo, radiation. and back on AIs.

The AIs (multiple types) gave me side effects and it came down to quality of life vs cancer reoccurrence.

My oncologist wanted me to stay on AIs, but we had multiple discussion on pro and cons and it was my decision what to do.

The things I discussed with him:
- reoccurrence rates based on my cancer and treatment.
- Genetic tests were negative for any genetic markers

My sister who also had breast cancer, but caught early only had lumpectomy and then started taking AIs. Her reoccurrence rate is higher then mine because even though caught very early, she did not have chemo or radiation.

There are many studies, but each person is an individual. So many things go into final decision, type of cancer, treatment you have received, age, life style and other medical conditions, That is why research and studies and only guidelines (in my opinion).

After I made decision not to take AIs, the oncologist made statement that if it does come back, we will treat it again. I was OK with that. I am 66 and willing to take a slight risk of reoccurrence vs side effects. My reoccurrence rate is only around 5%. I am 4 years out from original diagnosis and see oncologist every 6 months and have mammograms' and MRIs once a year.

Good luck with what ever your decision is.
Laurie

I'll admit that at Stage IIIc (5 tumors and 10 out of 16 nodes positive) I didn't have much choice. Nevertheless, I was extremely fortunate throughout heavy chemo and full radiation -- I found all of it extremely tolerable (except for losing my hair, of course) Once that course of treatment was over, I sought guidance at a nearby cancer center. They prescribed 2 year Tamoxifen (I was 69 at the time) and then 8 years AI (currently doing). I also was prescribed 3 yrs. Zometa infusions every 6 months. That's probably the worst decision, as I have dental problems and have to live with them for the moment. I am not aware of any side effects from the AI (Anastrozole) My feeling is I will do whatever I can to fight off distant mets. I would add that I consider the maintenance part of the treatment to be the most important decision to make. Get second opinions (and third) if you feel your oncologist is offering a "cookie cutter" regimen. Every person is different; why we all have to do our own solid research based on our type of cancer and our general health situation. Such a personal decision: all of this. Blessings and peace to everyone faced with making these maintenance treatment decisions. They are important.

I miss my Femara. It made me feel safe. Breast Cancer Index showed no benefit to extending it years 5-10 but I would have continued anyway, except my osteoporosis had gotten really severe. Now that I am on Tymlos I am going to look into a couple more years of Femara. One doc said that might be possible. I have read that 7 years is as good as 10. A combo of AI and biphosphonate should be about as protective as we can get- but terrible that you had dental issues. Good luck!