Positive DCIS margins: Concerned about treatment

Posted by auksst @auksst, Jun 28, 2021

My 42yr old daughter had mastectomy with reconstruction at the same time. She is HR/PR+ HER-, No radiation, no chemo (oncotype 15), She also had 2 IVDC tumors in the same breast.No lymph node involvement. Stage 1, grade 2. She is on tamoxifen. May be starting Lupron. Anyone else not have any particular treatment for the positive DCIS margins? Concerned.

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@a06742sl

Clear margins, I am on hormone meds because mine was er/pr+ and Her-. I will take med for 5 to 10 years. Onco score only a 9. No lympnodes involved stage 1 grade 2

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With the exception of the positive margins, you do have the same stage and grade tumor. My daughter had 2 tumors in the same breast. Because of this they want her on Lupron. May I ask if you had just 1 or 2 tumors? (Just trying to help her decide about taking the Lupron due to all the side effects). Thanks so much for sharing.

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I had one very small lump. I could not feel it. It was in right breast. I did not take Lupton. I take Letrozole for 5 to 10 years

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I had Invasive Ductal carcinoma. It was invasive because it did come out of duct a little.

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I was 55. This was last year in May. I am post menopause

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I am glad you are here, because there are quite a few breast cancer patients with different experiences to visit with. I did not take lupron, however I did have breast cancer in my thirties and the doctors tend be a little more aggressive with treatments with younger women. Although your daughter is 42, and I have mostly read that under 40 is considered “young for breast cancer”, under 40 is only 2 years away and I don’t think cancer cares. Women under 40 tend to have more aggressive breast cancers, added to the fact that she has multiple tumors at diagnosis might make the doctors more likely to want to treat her more aggressively. I definitely would encourage her to get a second opinion if that is reasonable for her. If you don’t mind me asking, did she have a bilateral or single mastectomy?

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@auntieoakley

I am glad you are here, because there are quite a few breast cancer patients with different experiences to visit with. I did not take lupron, however I did have breast cancer in my thirties and the doctors tend be a little more aggressive with treatments with younger women. Although your daughter is 42, and I have mostly read that under 40 is considered “young for breast cancer”, under 40 is only 2 years away and I don’t think cancer cares. Women under 40 tend to have more aggressive breast cancers, added to the fact that she has multiple tumors at diagnosis might make the doctors more likely to want to treat her more aggressively. I definitely would encourage her to get a second opinion if that is reasonable for her. If you don’t mind me asking, did she have a bilateral or single mastectomy?

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She had a bilateral mastectomy with reconstruction.

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@auksst

She had a bilateral mastectomy with reconstruction.

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You are a nurse so I won’t bore you with the details of lupron, you already know and that’s why you are concerned. I would be concerned too. There are a lot of things to consider, especially at such a young age. I honestly wish I had managed to get the full bilateral, I have never met a single patient who was truly sorry they did, and I have met more than a few that are sorry they didn’t. There are hopefully very many years to reap the benefits of the decisions she makes now. I agree with everyone about going with your daughter and asking tons of questions, and/or second opinions. But your questions are specifically about lupron. This is designed to give her a chemical hormone adjustment and there are side effects. It is a cost versus benefit question for her to make with your help. The Onco DX, would certainly be a help in that decision. When making these decisions, I always assume I probably will have some of the most common side effects and decide if I can live it. The big question is how much is it going to help? I really hope this helps. Just in case you want the details, here is a link.
https://medlineplus.gov/druginfo/meds/a685040.html
I hope that link works for you. My first time posting one. I know this all usually happens pretty quick, how soon is her next appointment?

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@auntieoakley

You are a nurse so I won’t bore you with the details of lupron, you already know and that’s why you are concerned. I would be concerned too. There are a lot of things to consider, especially at such a young age. I honestly wish I had managed to get the full bilateral, I have never met a single patient who was truly sorry they did, and I have met more than a few that are sorry they didn’t. There are hopefully very many years to reap the benefits of the decisions she makes now. I agree with everyone about going with your daughter and asking tons of questions, and/or second opinions. But your questions are specifically about lupron. This is designed to give her a chemical hormone adjustment and there are side effects. It is a cost versus benefit question for her to make with your help. The Onco DX, would certainly be a help in that decision. When making these decisions, I always assume I probably will have some of the most common side effects and decide if I can live it. The big question is how much is it going to help? I really hope this helps. Just in case you want the details, here is a link.
https://medlineplus.gov/druginfo/meds/a685040.html
I hope that link works for you. My first time posting one. I know this all usually happens pretty quick, how soon is her next appointment?

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Thanks for your comments. Her oncotype was 15 in one tumor and 16 in the other.

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@auksst

Thanks for your comments. Her oncotype was 15 in one tumor and 16 in the other.

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I am keeping her and you in my thoughts and I hope you feel welcome to visit here anytime.

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Hi, did your daughter end up getting radiation? I’m in a very similar boat as her. I’m 41 and just had a bilateral mastectomy with reconstruction. I had ER/PR+ HER2- IDC/DCIS stage 1/grade 2 no lymph node involvement and low oncotype. I need to decide if I want radiation since I had a positive margin for the DCIS. I’m planning on taking Tamoxifen for the next 5 years. I’m leaning on not getting radiation because I worry about all the damage it can cause internally.

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