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Aromatase Inhibitors: Did you decide to go on them or not?
Breast Cancer | Last Active: May 12, 2023 | Replies (1190)Comment receiving replies
I have invasive lobullar CA , ER/PR + HERS neg , had SX completed radiation. I am seriously considering not taking anastrozole due to my own health history (encephalitis) in my youth didn't leave me severly impaired but definitely work harder to be average? What is the actual percentage rate of preventing reoccurence ILC (I had total hysterectomy) how do I get this info?
Replies to "I have invasive lobullar CA , ER/PR + HERS neg , had SX completed radiation. I..."
I kept googling different sites. There are some in India that have great results. The drugs, All AIs, crippled me. I stopped after 6 months and I am still having problems. They caused me severe arthritis and weight gain, dizziness, severe mood swings, it was horrible. I was in bed the whole time, not able to walk. It took me 4 months to get those horrible side effects out of my body. I am 3 years cancer free, doing my 6 month checkups, and I have never felt better. I have lost 56 pounds and I walk 2 miles every day. I did it all by going whole food, plant based, no oils, and I am living my BEST life. I am 69 this year, and looking forward to many more good years. I dont have the sites anymore, but I remember the numbers being in the low 1 to 2 percents.....
@toepeekun, you'll notice that I moved your post about deciding whether or not to take an aromotase inhibitor or not to this existing discussion:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/
I did this so you can easily connect with others who have through this decision process. Keep in mind that everyone is different. What may cause side effects in one person, may not in another. You're right to consider carefully with your oncologist your own health history, age, your diagnosis, goals of treatment, and your specific risk of recurrence.
Have you discussed the percentage risk of recurrence specific to you with your oncologist?
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I can only say that the breast cancer 'industry' uses 50% as the presumed reduction of risk of recurrence of ER+ breast cancer if one takes either anti-hormone therapy for five years. The two oncologists whom I consulted say that the number is closer to 42-45%.
Your cancer issue might have very different statistics if a less common cancer. I calculated my decision about aromatase inhibitors by having the OncotypeDX test done with the tumor tissue. The test yielded a 3% risk of loco-regional 'recurrence at 9 years' if I took aromatase inhibitors. Arithmetical, that means my theoretical risk is approximately 5% if I didn't take them. [Chemo was ruled out as having x<1% risk/reward benefit and therefore not recommended.]
If you can get the genetic testing done, the data might help develop a plan of action. I saw my oncologist (first of two and still the main one) two weeks after surgery and he recommended the OncotypeDX at that time so it's possible to have a time lag between post-surgical biopsy and tissue submission to Oncotype.
I decided against the aromatase inhibitors because of the only-slight risk in reduction but everyone has a personal risk/reward level of comfort to consider. A high risk result would have made a different decision tree to ponder. Gene-testing for breast cancer issues is mentioned several times on other Mayo Connect threads so you can read about choices out there.