How long can I wait between lumpectomy and mastectomy?

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dragonsnake
dragonsnake Member Posts: 159
edited June 2016 in DCIS (Ductal Carcinoma In Situ)

I need help to decide on treatment. I was originally diagnosed with 3 cm DCIS, high  grade, comedo necrosis. I did a left breast lumpectomy, The original extracted piece had two involved margins and 4cm DCIS. Surgeon cut around the piece , the originally bad margins were cut out, but the margin on the good side showed more DCIS. I did a second lumpectomy, the newer  4.5 cm DCIS was found and excised. I'm waiting for details about margins;  report is confusing. I was thinking on doing a left mastectomy or  a bilateral one after learning that my DCIS is multifocal, and was not picked up as such on the mammo. My surgeon did not want to do MRI because it's not very conclusive, according to him. I always had pain and burning in both of my breasts.  I do not want radiation due to my previous expose and long-term side effects. I cannot do hormonal treatment due to a big uterine fibroid + many small ones,  although I might consider a total hysterectomy.

How long can I wait between my lumpectomies and a mastectomy?

Thank you


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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    I also had two lumpectomies with involved margins, and had to have MX. I waited 6 weeks, but my breast surgeon advised not to wait too long. What is too long? No one really knows. I also had an MRI, and it showed suspicious spots in the other breast that ended up being false positives. I might have had a uni-MX had I known there was nothing there. I think my MRI may have been rushed so that it was not done at the right time in my cycle (should be roughly between days 5-14). An MRI might be helpful in your case since you have experienced burning in both breasts. I sort of thought of my breasts as a matched set -- if one goes, they both go -- but it's not that simple. Twice the opportunity for complications, and reconstruction is hard. These decisions are grueling! I wish you the best in finding the way forward that brings you the most peace.

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  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    Thank you, LA star. Why 14-28 day for MRI? Isn't it when the breast is most swollen?

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    I just scheduled an MRI for monitoring and that's what the person who scheduled me said. But I just read here that it should be done between days 6 and 12! Maybe I should call them back (since this is the same group that screwed it up before).

    This article (here) says: "Since the breasts are less likely to exhibit residual, hormonal activity between the seventh and 14th days of the menstrual cycle, MRI during this time tends to yield better results. Benign hormonal effect in the breasts can render images somewhat difficult to interpret, particularly in high-risk women with dense, fibrocystic breasts."

    If you are post-menopausal, it seems that you can have an MRI at any point.

    I'm glad you asked!

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    I edited my post above to reflect the appropriate days. I called to check on my appointment, and I had misunderstood. I'm scheduled for MRI on day 5 of my next cycle. Whew! OK, sorry to hijack your thread!

    How are your decisions coming? Do you think you might want an MRI? How are you feeling about uni-MX versus bilateral MX?

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  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    I will be meeting  with my surgeon today, who will tell me that we do not have clean margins. I will try requesting an MRI and discuss what to do next. I would like to have some time before the  next surgery to  figure out a reasonable treatment plan.

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    I hope you get some clarity today. I wouldn't worry about taking a few weeks to gather information and make a decision you feel comfortable with. Deciding to have uni-MX vs. bilateral & deciding if you will have reconstruction and what kind are really tough decisions and it all takes time to sink in. I took a few weeks to research and talk with people who'd been through this, and then I found that my decision brought me some level of relief. Of course, moving on with the treatment process has it's own stress but it's also nice to be moving in a direction finally. Big {{{hugs}}} through this tough process!

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  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    I saw my surgeon today, I requested an MRI and referrals to MO and RO. We'll see how much junk is in my boobs, and then decide how to proceed. As of now, it's still high grade  DCIS , one margin involved. I guess it goes high grade right away, without a slow evolution from low-med to high. If it's true that it grows at a rate of 0.7-1 cm per year, I've been having it for 10 years already. BS said it's OK to wait for 4 or even 8 weeks.

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    It's great that you have some time to process, gather info, and make a decision. I know it's hard, but if you can give yourself some cancer breaks here and there, it will help a lot. Sometimes even not thinking about it for 5 minutes feels like a vacation! Best wishes for the best outcome.

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  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    So far it doesn't feel like a break but rather like delaying a treatment. I'm in this whirlwind since April, and still no certainty. It's maddening.  I wish I would now the extend of my disease. I wish I had a reasonable plan of treatment by now.

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