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Pros and cons of endocrine therapy
Breast Cancer | Last Active: 4 days ago | Replies (16)Comment receiving replies
@kbradtke if you read posts on a forum like this, you are going to see a lot more negative experiences than positive, because most people who do fine are less likely to post.
I did letrozole for 5 years with few issues apart from bone density loss, which most people avoid by taking a bone med- but my doctor didn't prescribe a bone med due to a heart issue. Otherwise I would have been fine.
Any pain went away if I walked more than 20 minutes.
You can try different aromatase inhibitors, different manufacturers or even brand name to try to get the best fit for you.
The Oncotype may recommend against chemo. That is not so much about whether it is needed but whether it is of benefit. Some cancers don't benefit. So saying you might prefer chemo to an AI is not only surprising but concerning!
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Thanks for your input. Yes I understand that many who post on these forums (or on any information platforms) are likely to have had more negative experiences and or may be at the beginning of their learning curve, like me. While this is not my first rodeo, (I had stage 1 ILC 23 years ago with lumpectomy, chemo, and radiation), treatments and knowledge have evolved since then. Yes I understand that the onco dx test or mammaprint are correlated with recurrence and the benefits (or not) of chemo as treatment. I actually learned about the Lobular Breast Cancer Alliance website from someone’s post on here, and that was hugely helpful!! I’m glad you found letrozole therapeutic. All AIs can produce problems with bone density which concerns me given that I already have osteopenia and osteoporosis. Some AIs can mess with cholesterol as well and I have hi cholesterol already, so the AIs as a therapy option concern me. Yes I want effective cancer treatment but none of us wants to invite other health issues unnecessarily or unwittingly. So while I asked if anyone chose chemo over AIs, this is me in search of answers, and other people’s experiences. Obviously no treatment plan would be chosen without many factors considered. Truthfully, I’m only now learning about what a sub specialty ILC is. Seems that certain hospitals have designated programs for such (Sloan Kettering, MDAnderson, Cleveland?) and wish I were under the care of someone with that research interest. I’ve been to both MGH and Dana Farber here in Boston, yet none of the med oncs I saw bothered to tell me that 95% of ILC is ER positive… my CNB showed 1-10% ER positivity and I spent 2 months thinking mine was more like triple negative breast cancer, including being asked by researchers at DNA Farber to participate in triple negative surveys…wasn’t until the tumor was excised that it showed a much higher degree of ER positivity. Would have been nice to have a med onc tell me that most ILC is ER positive and to wait. Anyway, the point is is that I’m just trying to be as thorough a gatekeeper for my own health as I can be. And that personal advocacy relies on gathering information and talking to other patients as well as doctors.