Looking for a little support and connection 💗
Hello,
I’m hoping to seek some support from anyone who may have found themselves in a situation similar to mine, especially around the decision between re-excision and mastectomy/bilateral mastectomy. I’d really love to hear about your experiences and what helped you make your decision (if comfortable doing so, of-course).
Just some background: I’m 42 and was recently diagnosed with Stage IA invasive ductal carcinoma of the right breast (ER+/PR+, HER2−). I had a lumpectomy with sentinel lymph node biopsy on 8/6. Thankfully, all of my lymph nodes were negative, which was an enormous relief. The harder news was that my final pathology showed positive margins, so re-excision has been recommended.
I’ll be honest that I’ve felt a little naive about the possibility of needing a second surgery. I had understood that, given the relatively small size of my tumor (0.8 cm), the lumpectomy would likely be fairly straightforward and that achieving negative margins would be the expected outcome. I knew that positive margins were possible, of course, but I don’t think I fully appreciated what that could mean in terms of another surgery and potentially having to reconsider the overall surgical approach. Finding that out after surgery was harder than I anticipated, and I’m still processing it.
My current treatment plan—additional surgery followed by radiation and tamoxifen—is consistent with the standard of care, and I feel very grateful for and confident in my oncology team. I’ve reached out to Roswell Park Comprehensive Cancer Center in Buffalo for a second opinion (not because I’m unhappy with my care) but I just want to make sure I’m as informed and confident as possible before making what feels like a very significant surgical decision. I think I’m simply looking for another perspective, some reassurance, and perhaps the experiences of others who have walked a similar path.
I’m considering whether to proceed with re-excision, a unilateral mastectomy, or bilateral mastectomy. There are a few things making that decision especially complicated for me: I have extremely dense breast tissue, with multiple large, painful cysts in both breasts, a family history of breast cancer, and my tumor was not visible on mammogram or ultrasound—it was only detected on MRI. That has made me think a lot about what long-term surveillance would look like if I keep my breast(s) and whether I would always feel anxious about something being missed.
And I find myself going back and forth constantly. Some days I think, This is Stage IA breast cancer. Am I overreacting by even considering a mastectomy? Other days, I find myself thinking that if I’m already facing another surgery, perhaps I should consider a more definitive approach—especially given my age, breast density, family history, and the fact that my tumor was only visible on MRI. I’m struggling a little to separate what is a reasonable consideration from what might simply be fear and the desire to feel more certain and in control.
There’s also a very personal layer to all of this. Just before my diagnosis, my wife and I were actively planning for pregnancy. I know my cancer treatment has to come first, but having this happen so unexpectedly has brought a lot of emotions around the future we had been imagining together. I’m trying to take things one day at a time and give myself permission to feel all of it.
As a nurse practitioner, I’ve naturally approached much of this from my clinical brain—researching, asking questions, reading pathology reports, and trying to understand all of the data. But I’m realizing that sometimes I need to step out of that role and simply be Morgan, a 42-year-old woman who suddenly found herself navigating breast cancer. 💗
So I’m especially curious to connect with anyone who has faced positive margins after lumpectomy and had to choose between re-excision, mastectomy, or bilateral mastectomy. I’d love to hear from anyone who was younger, had dense breasts, an MRI-detected tumor, a family history, or similar concerns about long-term surveillance—but truly, I’d be grateful to hear from anyone who has been in a similar position.
If you were faced with this decision, what factors mattered most to you? How did you ultimately decide? And how do you feel about that decision now?
I’m not looking for anyone to tell me what I should do. I think I’m just hoping to hear from people who understand this particular crossroads and can share a little of their experience, wisdom, or reassurance. Sometimes it helps so much just to know that someone else has been there. 💗
Thank you so much for reading, and for your support. I feel deeply grateful to be a part of this community.
Kindly,
Morgan
Comments
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Hi @sunshine_imogene, Morgan, and welcome to the Breastcancer.org community. We’re really glad you found us, and we hope you’ll find the support and connection you’re looking for here.
The questions you ask are big, and we hope to hear from others who have faced similar issues and can share what helped them. In the meantime, please know that you’re not alone in figuring out what feels right for you.
While you’re considering your options, you may find these articles helpful:
We hope these give you some useful information as you talk with your doctors and hear from others in the community. We’re glad you’re here
The Mods
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Thank you so very much for your support, and for these helpful resources — I am very grateful to be a part of this amazing community 💝
Warmly,
Morgan
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Hi again, @sunshine_imogene! Just checking back in to see how you’re doing, Morgan. Have you had a chance to talk with your doctors about your surgical options? We’d love to hear how things are going when you’re ready to share. We're here for you!
The Mods
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My first BC was not detected by mammography but by a very experienced physician using ultrasound. And while I now have a BC recurrence, I am glad I had lumpectomies earlier and not a mastectomy. This time around the surgeon is recommending a mastectomy and the more I read about them, the more terrifying I find them. I will be left with no feeling in that area of my chest - this means I won't feel hugs from my grandchildren, friends or my partner on that side of my chest. I will be in danger of getting lymphoedema on that side of my body my entire life. The term, mastectomy, is a bit of a misnomer. A mastectomy is an amputation of an organ that has a vital role in many women's lives. Breast prostheses are not necessarily comfortable and may not stay in place all the time (I used one earlier to help "even out" my breasts).
But I don't have dense breasts as you mentioned. Did your surgeon explain why they did not get clear margins?
best of luck as you proceed.
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