Positive DCIS margins: Concerned about treatment

Posted by auksst @auksst, Jun 28 10:53am

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.

Hi @auksst, I can understand your concern. When we hear "cancer," we want to throw everything possible at it to eradicate it. Sometimes treatments can be worse than the disease. Luckily, oncology medicine is getting better at pinpointing diagnoses and tailoring treatment to the individual. For women age 50 and younger and Oncotype Dx "Recurrence Score of 0-15, the cancer has a low risk of recurrence. The benefits of chemotherapy likely will not outweigh the risks of side effects." https://www.breastcancer.org/symptoms/testing/types/oncotype_dx

It's a great sign that there is no lymph node involvement. However, your concern stems specifically from the fact that the surgical margins were positive and that the cancer is threatening to spread. Right?

I think that you're asking the right questions and that they warrant a frank talk with your daughter's cancer care team. They can more precisely discuss the risks and benefits of additional treatment or allay your concerns by describing the effectiveness of tamoxifen and Lupron. Does your daughter share your concerns? Is she able to contact her oncology team?

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Yes, my daughter can contact her oncology team at any time. She doesn't ask as many questions as I do, probably because I am a RN and she isn't.

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@auksst

Yes, my daughter can contact her oncology team at any time. She doesn't ask as many questions as I do, probably because I am a RN and she isn't.

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Thank you for your reply. I appreciate it.

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@auksst

Yes, my daughter can contact her oncology team at any time. She doesn't ask as many questions as I do, probably because I am a RN and she isn't.

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Would she be comfortable with your accompanying her to appointments? As you know, when you’re the patient one tends to focus on the information and one can forget to ask questions or even think of the questions to ask. It might be helpful to have you with her.

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Oh yes, I go to most of them with her. I'm thinking maybe a 2nd opinion is in order.

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@auksst

Oh yes, I go to most of them with her. I'm thinking maybe a 2nd opinion is in order.

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A second opinion could be a good idea at this point. She must be so grateful to have you with her for appointments.

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It is great you daughter has you there for support. My breast cancer had clear margins but lymph node involvement so my treatment was very different (chemo and radiation)

My sister's diagnosis is similar to your daughter and after lumpectomy she is on tamoxifen but not tolerating side effects so plans on discussing with her provider about changing dosage or switching medication.

My sister is a RN, but when I went to an appointment with her I had list of questions. Maybe because I had been through the process already.

I suggest writing down your questions before going to her next appointment and there is no harm in getting a 2nd opinion. I did not get a 2nd opinion, I was comfortable with the treatment plan I had at Mayo.

Specifically I would ask the what are the chances of reoccurrence. My oncologist was able to explain how each treatment option affected reoccurrence. As an example, because I had chemo and radiation, my chance of reoccurrence is less than my sister whose cancer was caught earlier and just had surgery and tamoxifen. Every patient reoccurrence rate is going to be different based on diagnosis and treatment plan.

The other important question to ask the oncologist about is how they plan to monitor your daughter in future. How often and what kind of test are recommended.

I hope everything goes well,
Laurie

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I had the same prognosis and didn't have any treatments. My onco score was a 9

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@a06742sl

I had the same prognosis and didn't have any treatments. My onco score was a 9

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When you say same prognosis, what do you mean? Are you not on any hormone suppression meds? Do you also have positive margins? Thanks…

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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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@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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