DCIS stage 0 grade 3 ER + Lumpectomy and Radiation, clean lymph nodes
The Dr. gave me the choice lumpectomy or mastectomy. As she said it was caught early and still inside the duct I picked lumpectomy. Surgery went well, no complications, clean margins, clean lymph nodes etc. Did Radiation and because of the grade AI drugs - Oncologist said 50% chance it will come back. She originally told me it would be a "blip" in my life. I will never forget that.
However these AI drugs have wrecked my brain, joints and body. Had I known that, I would have had a mastectomy. I still have not gotten a "clean" mammogram as they are following both breasts with calcifications in one and fatty necrosis in the surgical breast. I go for an MRI and then a mammogram after.
I would like to know if anyone else had such problems with AI drugs, Anastrazol, Letrazole that they then had a mastectomy ? This is what I am considering.
Not sure what % of return would be with a mastectomy be figure it has to be less than 50%
Anyone else do this? Any thoughts ? I assume I could stop AI drugs if I got rid of the breast tissue. I am 69 and if I have to lose my breasts and have quality of life - that's ok with me. My youngest has two children and I watch them - they make me want to be here. She is planning a wedding that I would like to participate in. Right now with all the side effects I cannot do as much as I would like.
I realize I am lucky that they found the cancer early and it's only this - I am thankful for that. But had I known what these drugs would do to me - including give me diabetes, cholesterol problems and low blood platelets, I never would have chosen this route.
Flowergal
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Hi @flowergal58 -
Welcome to this forum! We're sorry for you having to be here, but glad you have found us.
I doubt that the recommendation would have been different regarding AIs if you had a mastectomy or a lumpectomy. My guess is they would have recommended an AI either way. Even with a lower grade, they would likely recommended AIs for any ER+/PR+ dx.
50% sounds like a REALLY high recurrence rate. With it being DCIS, I am surprised to hear that, but I'm not your MO. I am grade 3 and IDC and even if I hadn't had chemo, my recurrence rate wasn't that high. Are you sure that you heard that correctly? Sometimes MOs don't explain themselves well. You may want to ask for a clarification of that?
Have you discussed your issues with your AI with your MO? Since there are at least 3 different ones to try, sometimes people find that one AI will give them less side effects than another one. Your MO may also be able to offer other solutions to the side effects you are having.
You might also like to read about other's experiences in this topic:
I'm sorry to hear that you are still doing more imaging tests and they are having a hard time getting a 'clean' one. It's really hard being on that roller coaster.
Please keep posting for support and reading about other's experiences. You have an audience here where we all 'get' what you are going through.
Hang in there.
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@flowergal58, welcome to our community here at BCO! We’re so sorry you’re going through such a difficult time with side effects, but we’re glad you’ve reached out. As you can see, you’ll find others here who understand you and can offer support and share their own experiences. Thank you, @mandy23 for such a supportive response. Flowergal, please keep us posted on how you're doing, and feel free to reach out anytime!
The Mods
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thank you for the response. Oncologist said 50/50 chance of reoccurrence without AI drugs.
I cannot tolerate these drugs so far. When I spoke to the oncologist about it she said all were probably going to have side effects.
I appreciate your support.
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Hi @flowergal58 , I wonder if your oncologist meant that AIs decrease your risk of recurrence by 50% which they do. That means if your risk of recurrence is 6% taking AIs will reduce it in half to 3%. If you know the actual percentages it can help you decide if the side effects are worth the benefit. Maybe you could call the doctor’s office and ask an advanced provider or nurse for clarification. A mastectomy and lumpectomy have the same recurrence risk since AIs work systemically throughout your body. Mandy23’s suggestion to discuss your side effects with your MO is a good one. Some people tolerate a different AI better and tamoxifen which decreases recurrence risk by 40% but works in a different way has different side effects. I hope you can find a solution.
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