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

The Oncotype and Mammaprint are used when pathology is first done after surgery. The Breast Cancer Index is for deciding on continuing meds for years 5-10. They told me studies only covered that period of time but that since it showed no benefit for me from AI's for those years, I could maybe assume the same was true for years 1-5. However, after writing you before, I think it might be hard to get the Breast Cancer Index at this stage for you. The Oncotype is standard of care and in all the guidelines. I felt comfortable relying on it. The company reps are very informative and reassuring.

If I were you, I would try the aromatase inhibitor (I did Femara) and work with oncologist and endocrinologist on monitoring and possibly treating your bones.

I am sorry if I complicated things for you. AI's are very tolerable or even without side effects for many of us and with your scenario I am sure they will be very helpful.

@windyshores My onco ordered the OncotypeDX. The hospital sent the tissue directly to Oncotype after the surgery in October. The Breast Cancer Index test would have been helpful too. I wish I'd known about the various tests earlier. Looking back to the diagnosis last fall...well I was in shock. No one in my family has had cancer other than father who died of prostate cancer the second time he got it. I was blindsided by the bad biopsy and only now realizing how much more I'll need to consider going forward in order to feel some confidence in a personal decision tree. I just keep adding to the list of questions I plan to ask the oncologist this week.

Has anyone taken raloxifine (Evista) instead of an AI? It's a SERM and is used to prevent or treat osteoporosis.

@ vivi1 I found the article you cited very informative. Thanks for sharing it

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!

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.

@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

@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.

@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.

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.