Looking for support or some insights on my decision.

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QueenB44
QueenB44 Member Posts: 27

Hello to all of you amazing cancer warriors! I was diagnosed with DCIS low grade Comedonecrosis, Hormone positive Nov 2018. At the time I elected to have a lumpectomy. The lumpectomy pathology results gave clear margins with some LCIS. Doctor said no cancer and all good. I was also given the option (standard treatment protocol) to take hormone therapy and rads. My Oncologist was actually reluctant to push the hormone therapy which was good with me because I hate all medicine and would rather go holistic if possible and not deal with side effects. With that being said I bowed out to rads as well due to the stage zero and low grade I thought I could be clear.

Well now here I am back at it as my most recent mammogram/biopsy confirmed 3 new DCIS locations that are now High grade. My DRS don't seem to think that the high grade means that much other than yes surgery should happen with rads and hormone therapy this time. Quoting that DCIS high grade is way better than Invasive cancer. Yet, I know and they agree that the high grade will eventually become invasive. I'm thinking with all the new DCIC pop ups that my boob is just doomed with this.

So, here are my thoughts. I feel that what I've read on this site from others and tuning into my instinct, that I need to just have a mastectomy (Double while they are at it) and basically be done with it. If the DCIS can come back so quickly and at a higher grade I'm thinking more may be hiding somewhere and that I'll be a pin cushion forever and multiple surgeries and treatments if I just chose another lumpectomy. I know that the decision is so personal with everyone and each situation is different. I have had a few people tell me that a double mastectomy is extreme. I also worry that I could have some horrible complications that I may regret later. I'm actually thinking about reconstruction (boobs now are way too big) with fat transfer.

I would love to hear anyone's thoughts and experiences on this. I'm really feeling the double mastectomy is the best option but I'm starting to think about this a little harder. Also, with Covid running like crazy here in Texas I'm concerned with being down by Rads/Surgery and being vulnerable.


Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    I'll be honest. Sometimes I see women who have small areas of low grade DCIS who opt for a BMX, and I cringe a bit. It can be such a life changing surgery, in how it affects your body and your sex life and your relationships, and there can be complications and side effects that can linger on for years... it seems to me to be an over-reaction to an indolent tiny low grade non-invasive condition (many experts don't consider DCIS to be a cancer) that can be easily and fully treated with a small lumpectomy. Now, if there is a strong family history, if someone has a genetic predisposition to develop breast cancer (BRCA positive or something else), if someone has gone through years of biopsies... there are lots of reasons why it might make perfect sense for someone with a tiny low grade DCIS to have a BMX, but if none of these other conditions are there and it's just a 3mm grade 1 DCIS... yeah, I cringe a bit when I see that. But I keep that to myself because everyone needs to make the decision that is right for themselves.

    However when it comes to breast cancer (including DCIS - my preferred definition, particularly for high grade DCIS, is that it's a pre-invasive cancer), I'm a big believer in "two strikes and you're out". To me, being diagnosed a second time means that there is something in one's breasts or one's body that makes the breasts fertile ground for developing cancer cells. I've been hanging around here long enough to have seen more than a few people who started with DCIS come back a 3rd time or 4th time, and it seems that each time, the diagnosis is worse. So in your shoes, I'd make the same decision.

    I usually don't offer up my opinion on this subject because this is such a highly personal decision. Everyone needs to do what they feel is best and I don't want to influence someone to do something that isn't what they are most comfortable with. It's also so easy to offend those who've already made their choices, for example someone who did have a BMX for a small low grade DCIS, or someone who has opted for lumpectomies with a second or third diagnosis. But since you've said what you are thinking about doing, I thought I would offer up my thoughts - yeah, I'd do the same thing. I'd think, "Okay breasts, I gave you a fair shot, and you failed me. Time to go."

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2020

    Hi!

    I chose a lumpectomy, even though I had aggressive cancer (IDC, HER2+, Grade 3). A BMX is more serious surgery and more likely to involve complications, especially if you choose to get reconstruction. If it were to come back, however, I'd do a mastectomy (not sure on BMX). I get what Beesie is saying -- if your breast fails you twice, maybe it's trying to tell you something.....

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