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Nov 19, 2009 10:17am PatMom wrote:
I am somewhat surprised that both chemo and radiation are being recommended for you with stage 1, grade 1, ER+, no node involvement and you having had a bilateral mastectomy.
Has your doctor ordered an Oncotype DX test to see if chemo would be effective for you? Chemo is usually most effective against more aggressive (higher grade) tumors. It is unusual to have grade 1 and HER2+, and Herceptin is usually only given with chemo, but some people have gotten just the Herceptin. With a slow growing ER+ cancer, and grade 1 is slow growing, hormone treatment like Tamoxifen is usually the far more important part of treatment than chemo.
There are some chemos not usually used for breast cancer (but sometimes used with Herceptin) that cause hair thinning, but not total hair loss, and if that is a big concern for you, you should ask your oncologist about that. The way your oncologist answers will speak volumes about how the whole chemo situation will be handled. If your concerns are dismissed, please, please find another oncologist because every oncologist is asked about hair loss on a regular basis, and if they haven't figured out how to help you deal with that, they won't have figured out how to handle the other side effects that you are likely going to have to deal with.
I chose not to do chemo. The hair loss was a part of it, but not the biggest part. I was far more concerned about cardiac damage, nerve damage, and the other potentially long term side effects. I am a year and a half into taking Tamoxifen, and while I'd love to not have any side effects with that, the ones I have are things I can live with.
This is one of those times in life where you need to take charge, gather all the information you can, and make the decisions that are right for you and your life, and not just accept whatever a doctor recommends because they are a doctor.
Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive.