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Distant recurrence risk

Breast Cancer | Last Active: Aug 8, 2023 | Replies (23)

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@californiazebra

I didn't receive those scores in 2013 when I had my stage 1 cancer, BRCA2+, double mastectomy. Receiving two different percentages indicates to me that it's not an exact science, but an estimate. I didn't do chemo or radiation since it was stage 1 and I had a mastectomy. My oncologist at that time told me my chance of survival with endocrine therapy was 99.6% and without was 99.2% because we caught it so early and mastectomy. He advised me not to take the endocrine therapy that would cause side effects since it would make little difference for me. Fast forward 7 years and my breast cancer was back in my chest wall right behind where the breast tumor was only now 3x as aggressive. My new oncologist said he totally disagrees with the other oncologist's assessment and I should have been on endocrine therapy. Maybe they have better tests now than 10 years ago? My breast surgeon who saw me 15 times during those 7 years and knew I wasn't on endocrine therapy acted surprised I wasn't and said it would have lowered my risk of recurrence by 50%. If I could go back in time I'd take the endocrine therapy. I'm on it now along with kisqali and it's tolerable. Take all precautions. Keep up your self-exams even if you have a mastectomy because I found the recurrent tumor myself. If you have any concerns or confusion about what you're hearing, don't hesitate to get a second opinion from an outside breast oncologist. Prayers for you that you'll be one and done. Although varied, your percentages are very encouraging. Take all preventative measures you can and live your life without worrying about what may or may not happen. I've been stage 4 for 2.5 years now and still get up and look forward to every day. I'm enjoying life. I have a good friend who had stage 1 at 35 years old, had a double mastectomy, not sure what other treatment, but is now 69 with no recurrence. She's living a great life with so many blessings. You will too.

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Replies to "I didn't receive those scores in 2013 when I had my stage 1 cancer, BRCA2+, double..."

First of all, I am sorry to hear that you did not receive the best information from your original Oncologist. I am in total agreement with you on seeking second and even third opinions when it comes to BC.
I had my double mastectomy in October and will be doing reconstruction with implants in June. This was a very difficult decision and I am concerned about how I will check for reoccurrence with implants in place. Did you have implants when you discovered your reoccurrence? Appreciate any information you are comfortable sharing.

You get A+ for best attitude ever! (and we all are learning more and more every day that attitude makes a huge difference with this stuff) Thank you for your honesty regarding endrocrine therapy. I wouldn't consider giving it up at this point, but after only 1 1/2 years in, have sufficient side effects to be tempted to do so! (elevated blood pressure, vaginal dryness which has progressed to lichen sclerosus which is in and of itself, a pre-malignancy and glaucoma). The way I look at it though, these things can be managed. A second opinion helped this post-menopausal woman move to an AI rather than a 5 yr. cookie cutter Tamoxifen treatment offered by our cottage hospital here.

Amazing! Did you find out what treatments did your friend do?