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Opting out of radiation or chemo
Breast Cancer | Last Active: Dec 31, 2023 | Replies (98)Comment receiving replies
Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the BRCA2 mutation. (We later discovered I also have the CHEK2 mutation.) My cancer was stage 1, medium grade, DCIS, LVI, 7 mm, clear margins, HR/ER+ HER2-. Radiation and chemo were not recommended due to the mastectomy and stage 1. My surgeon told me 1-3% chance of recurrence. Then my oncologist (her partner) told me I had a 99.6% survival rate with a hormone blocker and 99.2% without so he recommended I didn't take it. Ultimately, I only did the surgery.
In 2020, I found a lump in my chest and pectoral muscle. It was now highly aggressive cancer. Removed by surgery, but I had a positive margin. 37 radiation treatments. Now on Kisqali and Letrozole for over 2 years and for as long as they keep working. I'm 64 now, the meds have side effects, but nothing to make me stop taking them.
My original surgeon acted shocked I didn't take a hormone blocker originally and said it would have reduced my risk of recurrence by 50%. I saw her the entire 7 years for follow-ups and she knew I wasn't taking one. CYA
Bottom line - my current oncologist completely disagrees with what I was told back in 2013 both about risk and meds. You may want to consider getting a second opinion for peace of mind. Also remember that you can always stop taking the hormone blocker if you can't tolerate the side effects. I hope this is helpful. Blessings to you!
Replies to "Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the..."
So sorry to hear your story. Is the recurring cancer estrogen positive? Wonder why you are taking estrogen blocker. I read that when estrogen positive cancer recur, normally they won’t be estrogen positive anymore. Wish you all the best and can tolerate the drugs for a very long time. Try ground flaxseeds daily (2 table spoons) if the recurring cancer is still estrogen positive. God bless you!
What does CYA mean? Ask your surgeon why she didn't say anything earlier.
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Agree! I never even thought of getting a second opinion until all my active treatment was done. In my case, I had no choice about whether to do dose dense chemo and full blown radiation therapy. I just did it. Then after it was done, the oncologist said "we'll do 5 yrs Tamoxifen" I said "wait, what??!! I'm way past menopause" That sounded too cookie cutter to me, and sure enough (after seeking a second opinion at an actual cancer center), it was. I am now on Anastrozole (as well as having done 3 years Zometa) not without cost. My treatment decisions at this point are based on information from medical professionals not engaged in a past generation's thinking AND fear. The fear part is not debilitating, but for me, keeps it real.