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

Thanks for being my new friend

@katrina123
Since you are starting out in your exploration on this very complex subject, I hope that you will allow me to give you some hints on how to proceed. Firstly, learn everything you can about your particular diagnosis (there are many types of breast cancers and people have individual pathology characteristics like whether or not the tumor was hormone receptor positive/negative/both or HER2 positive or negative, whether there is a genetic link involved through family history, etc. When you are ready to read various studies on your particular situation, look for current articles (the science changes rapidly), and studies based on large cohorts. (I particularly like what they call meta-analyses where similar studies are combined.) Learn the lingo used. For example, a lot of what is written about aromatase inhibitors and selective estrogen receptor modulators discusses their use in terms of the risk of recurrence and overall mortality. You want to focus on the former. The notes on overall survival have a gzillion factors (like age, whether the patient has diabetes or heart disease or other comorbidities, etc.), and our survival depends more on those factors than anything else. The reason we take AIs or SERMs is basically to prevent recurrence of our cancer (somewhere in our bodies), and AIs and SERMs have a good track record of preventing recurrence while we are taking them, despite the side effects we may encounter. (Another bonus of AIs is that researchers now believe that they may have somewhat of a protective effect up to five years after we stop our 5-7 year program of taking them!) Make copies of the studies which interest or trouble you and discuss them with your oncologist, asking about why your current treatment is appropriate in light of the studies you are reading. In the end, the decision ultimately will be yours once you feel that you are sufficiently informed.

The five-year old article which you cited is focused on a specific subgroup of high-risk patients in a particular Swiss study, and discusses whether there is a way to use AIs and SERMs as a preventive tool in healthy women versus a treatment tool for those with breast cancer... not something which is going to be helpful in your exploration in my view.

Ladies so nice to meet you all! First I can say I feel blessed to have been treated by mayo and all the science they put into choosing my treatment plan. I am from 10 hours away and I couldn’t sort my best breast cancer treatment there. I have had the works, chemo, mastectomy, radiation and I am on tamoxifen.. so far so good! I choose to do as much as I can to learn and contribute to a healthy outcome. I walk most days for 30 minutes because it lowers return risk by up to 30-40%, I eat mostly healthy cuz I like to.. I am in pt with mayo now so I can learn how to love my joints when I start an AI. Which one should I seek out first? I want to be wildly alive yet and able to help others.. I think I have been blessed with more time just want to do my best with it. 🙏🏼 Thank you for any suggestions

Hi @yahomich, welcome to Mayo Clinic Connect. What a lovely introduction to get to know a bit about you. After having had chemo, mastectomy, radiation, and now tamoxifen, I see you are considering and researching aromatase inhibitors. For that reason, I moved your message to this existing discussion called, "Aromatase Inhihibitors: Did you decide to go on them or not?" If you click VIEW & REPLY, you can scroll through all the fabulously informative posts by fellow members.

Good for you for taking control and walking and eating well.

Yahomich, I'd be curious to know, what have you been told by your oncologist so far about the different AI options? Is one being suggested over the others? Or is the choice completely yours?

Hello, I do not have cancer but have a family history of breast, mother and sister, father lymphoma ect. I had a complete genetic testing done and showed a mutation of unknown significance for breast and melanoma. I had melanoma . I was sent to an oncologist who wants to put me on Aromatase as a preventive. I'm 68, healthy active and still working and last thing I need are all these side effects I've read about just in case I get it. Not sure I want to go that route but I do get 2 mammograms and ultrasounds a year and have regular spot checks for my skin. It's been a tough decision but writing to hear from someone who has used it to prevent. Thanks for your info.

I’m not taking any of these horrible drugs.

Something like 60% of people have NO Side effects. You need to weigh that factor in with all the other information.

And of course people with no side effects don't post here. 🙂 I've met a few BC survivors that never had any side effects even after 5 years. Made me jealous. LOL

I’m suppose to start the terrible pill in two weeks and have decided not to. All the bone issues and other complications. Quality of life will be forever changed. The pill is only 50 percent effective anyway. If you get bone issues which everyone does they put you on another pill like Boniva which affects your long bones and turns them to Swiss cheese. My friend was in that junk and she was just walking along and broke her femur and the surgeon immediately took her off that pill. If you get high cholesterol then they put you on that pill. Pill after pill after pill. Even after the five years there are lasting affects

@crazydaisy I'm with you. I started anastrozole and took it for 6 months. The bone pain made me feel like I was 90 years old. After consulting with my doctor she told me I should have never taken it for that long with the pain I was in. I was changed to tamoxifen took it for 3 months and again started to feel more pain. I have decided to not take anything. My quality of life is more important than these drugs that make you feel worse. The last straw was when my new doctor suggested that I take the tamoxifen again. When I questioned him about my concerns with blood clots and ovarian cancer he said no big deal about the ovarian cancer you just get a hysterectomy. Needless to say I need a new doctor. My chances of recurrence are low and taking tamoxifen would cut it in half. We all have to do what we feel works for us good luck in you decision I know it's a tough one.