Hello everyone
I am 37 years old and a mother of 4 little ones. I had two lumpectomies 1 week ago and was just diagnosed today with DCIS Grade II, ER+/PR+. Unfortunately margins were not clear. My breast surgeon gave me two options
1- she is highly recommending a massectomy with reconstruction. She stated that due to my breast being very dense, and I have a lot going on in my breast. It will also lower the chances of recurrence.
2- Another lumpectomy to try to obtain a clear margin, 30 days of radiation, and Tamoxifen for 5 years.
I was shocked and I really didn’t ask questions. The nurse navigator made an appointment for me with a plastic surgeon January 12 and January 14th I will meet with my breast surgeon for surgical planning.
I am petrified regarding having a massectomy. I am scared of surgeries in general. The lumpectomies to me were extremely painful. I am 2 hours away from the hospital (I live in Naples, Florida and the hospital I am going to is in Miami.
My question is, has anyone gone through something similar? What did you choose? If I were to do the lumpectomy with radiation and tamoxifen what is the risk of recurrence or a new cancer developing?
Thank you for taking the time to read my message
Comments
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Hi @suzy2618, For DCIS a mastectomy has a local recurrence rate of almost 0% while a lumpectomy with radiation has a local recurrence rate of 2 to 8%. Since you have dense breasts mammograms would be more likely to miss a recurrence.
A mastectomy with reconstruction is more involved than a lumpectomy. However, radiation and tamoxifen can have side effects. You might want to read about these to help you make an informed decision. The surgeon might also be worried about the cosmetic result of a repeat lumpectomy.
You need to do what you are most comfortable with but it is good to research both options. Reconstruction could be done with an implant or autologous tissue flap, both of which have pros and cons, so that is something else to consider. It would be helpful to attend each appointment with a list of prepared questions so you get all the answers you need. All the best.
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@suzy2618, MRIs can help with detection but they also are more likely to give false positives and trigger biopsies with all that entails. Some women go with a mastectomy to avoid the worry of surveillance.
One other consideration is that about 10 - 20% of re-excisions still have bad margins and a mastectomy ends up being done eventually. You should ask the breast surgeon why she is highly recommending a mastectomy in your case. That might be something you could do via your patient portal. DCIS margins must be more than 2 mm which is harder to get than IDC margins which are no ink on tumor.
It is a tough decision to make since everyone’s situation is unique. Good luck figuring out how you want to proceed.
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@maggie15 I will definitely ask my doctor. I have appointment January 12 with plastic surgeon, and 14th with my breast surgeon for surgical planning. On my report it says distance from DCIS closest to margin less than 1mm and DCIS is present in 7 blocks and is less than 1mm away from the inferior margin. No idea what all that means
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@suzy2618, I’m not a doctor but being less than 1 mm from the inferior margin means it is too close to the bottom margin. Pathology blocks aren’t a standard size (often about 1 cm) but I’m surmising the DCIS is spread out. I’m guessing your surgeon is suggesting a mastectomy because given her experience she knows it will be difficult to get the required margins with another lumpectomy.
It’s a blow when you’re initially diagnosed and other disappointments sometimes pop up along the way. My surgery went as planned but my treatment changed when pathology found a positive lymph node that had not shown up on ultrasound. I then had rare serious side effects from radiation which led to new health issues. You just have to deal with whatever happens as best you can.
Even if you want to try the re-excision you should consider what your second choice would be (unilateral or bilateral mastectomy, no reconstruction, implant or flap.) At this point it would probably be impossible to find another breast surgeon to take over since surgeons “own” a surgery they started. If you want to go with the re-excision after hearing what the doctors have to say by all means go for it. It’s much harder to pivot with children at home since it disrupts everyone’s life.
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