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Mastectomy with close margins

loverly5
loverly5 Member Posts: 9

Hi,


I recently had a bilateral mastectomy to remove a large section of DCIS in my right breast. My surgeon said the margins were clear and that’s all that matters (the closest ones were the superior at 1mm clearance and the deep at 2mm clearance). He said the recurrence rate is less than 5%. However, I’m 35 and the dcis was grade 3, which is why I’m quite concerned about the close margins. I’m not meeting with the oncologist for another few months but want to be prepared with questions. I’ve read a lot online but the information seems quite confusing and at times contradictory. Does anyone have a better understanding of the statistics after mastectomy with close margins? Has anyone been in this situation? Thanks for any help :

Comments

  • tb90
    tb90 Member Posts: 279
    edited April 2023

    OMG, I have so been here. Ten years ago. I cannot believe it’s been ten years! But I actually had a positive margin. Microscopic. I researched everything extensively and have maintained the research over the ten years. Most studies suggest that any margin is safe. Even close margins. Looking back, I believe I overreacted to my dx. The word cancer scared me to death. DCIS has such great outcomes. But the fear is always a recurrence with invasive cancer. It is rare, but not nonexistent. I opted for radiation. I breezed through it. And do not regret my decision. But I just had a cardiac scare and studied cardiac affects from radiation. I had left side bc. I am not certain what side your DCIS was on. It turned out to be a false scare but it made me really look back on my decision. There is no answer for your question. I wanted science to tell me what was best. The studies were inconclusive, but my understanding was close margins with mastectomies for DCIS was still a predictor of great outcomes. Any further treatment presents other risks. Ask them for scientific outcomes for recurrence for your statistics. My Radiologist Oncologist had his intern research outcomes. I was proud to present with the same studies. Google can be useful. What he said to me was that it came down to my ability to deal with risk. And all decisions have risks. Your margins exist. Your future is very positive. If I was on the Voice, I would suggest no further treatment. But it is not my decision. Medication, like tamoxifen or AL’s, we’re never recommended for me. But would be another question to ask. Not sure this was helpful. You cannot really make a bad choice. Your future is so positive

  • loverly5
    loverly5 Member Posts: 9
    edited April 2023

    thank you so much for the reply — that is really encouraging news to hear you’ve been here but are doing so well 10 years out!! Those are good questions to ask which I will follow up with my oncologist. It seemed like some studies show with my age, dcis grade and close margins I’m at the much higher end of recurrence rate (but not sure how much radiation would reduce that risk). My dcis was on this right side — so maybe radiation wouldn’t be as bad? Sorry to hear about your heart scare, glad it was a false alarm. Did you have a large section of dcis

    Thanks again for the reply.

  • tb90
    tb90 Member Posts: 279
    edited April 2023

    Radiation reduces risk by 50%. My risk went from 1% to 13% due to positive margin. Radiation cut that in half. If your risk is already small, the benefit of 50% is smaller. I had 6cm of DCIS in a very tiny breast. These are questions I would ask. Good luck at your appointment.

  • loverly5
    loverly5 Member Posts: 9
    edited April 2023

    Thanks for letting me know — there are so many decisions to make. It’s a lot. Appreciate you taking the time to respond and give support

  • snm
    snm Member Posts: 54

    Yes I am in same situation! Had bilateral mastectomy in Feb 2023 for high grade DCIS (grade 3) 5.3 cm area in left breast and 1.3 mm microinvasion. DCIS Area involved went from my skin to pectoral muscle - ie margins were very close. My surgeon and oncologist said that risk for recurrence is very low (5%). From what I've read most recurrence happens at the 5year mark. It was not recommended that I receive chemo or radiation; only breast exams.

    I hope that helps.

  • loverly5
    loverly5 Member Posts: 9

    Hi Snm!

    Thanks for sharing! Do you need hormone blockers or just self exams? Truthfully, just self exams frightens me a bit, so worried about missing something. It’s hard to just move on without much monitoring.


    Hope you’re doing well since the mastectomy!

  • snm
    snm Member Posts: 54

    Hi loverly5,

    No hormone therapy. I was ER neg, PR neg, and HER2+. Yeah I'm also uneasy about monitoring with exams only but I tell myself that I need to trust the process and my body…and come what may.

    I am doing well since Bilateral mastectomy, but still with these tissue expanders which are very uncomfortable especially my left side. I go for implant exchange on May 23. I'm hoping for some relief!

  • loverly5
    loverly5 Member Posts: 9

    I’m ER pos (only slightly tho 11-33%), PR neg and don’t know her2 status. The oncologist is bringing my case up at the tumor board. Not quite sure what will be decided but will keep you posted!

    Hope you get relief at the end of May too!!

  • snm
    snm Member Posts: 54

    Good luck with your recovery as well! Just curious did u opt for reconstruction? I'm nervous about another surgery but have to take the plunge!

  • loverly5
    loverly5 Member Posts: 9

    I’m hoping to do reconstruction next winter — the wait times for both surgeons (plastic and breast) was much longer than only doing the mastectomy (and I was anxious to get the DCIS out). Not looking forward to more surgeries either! Sending positive vibes — and hope it’s a fast recovery!