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Emotionally and mentally accepting mastectomy

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dogmomof2
dogmomof2 Member Posts: 7

Hi. Looking for some support and suggestions on accepting getting a mastectomy. I was recently diagnosed with DCIS after a biopsy. The plan at that point was lumpectomy and radiation. I had an MRI and received the results today. The MRI indicated a much larger area of DCIS (mammogram indicated 5cm; MRI indicated 14.5 x 4.1 x 6.9 cm). The treatment plan has moved from a lumpectomy to a mastectomy as of today. I am feeling pretty shocked and trying to move towards acceptance. It feels particularly difficult to be told that I have Stage 0 and then to be told I need a mastectomy. I have started reading about how to prepare for a mastectomy (including what to buy, preparing my home, getting support, etc). I am hoping to hear from some folks about how you prepared mentally and emotionally? I am working on accepting this and would love any ideas about things that you did, things you read, or other suggestions that were helpful in accepting this pathway forward. I am really grateful to get treatment and surgery now and I am also noticing a lot of grief.

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  • cookie54
    cookie54 Member Posts: 717
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    @dogmomof2 Sorry this has now turned into a mastectomy for you. I know it's a tough pill to swallow lets face it there's nothing like our own natural breast tissue. I think I was able to accept it a little easier because I had 8 breast biopsies over 9 years. I never wanted to ever have another mammo, MR or biopsy again! I feel like everyone grieves the loss differently. I told myself my life was more important than my breasts and hair when I lost that also during chemo. I didn't read any specific books I found lots of info on here.

    Allow yourself time to grieve you are going through a tough time. We are forced down this pathway so I think it just takes time to accept it all. Your life is worth fighting for just take it one step at a time.

    We are all here for you. Sending positive vibes and strength as you move forward in this process.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,946
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    I think having to shift gears from something less invasive, lx, to something bigger like a mx is a big mental switch that will take time to adjust to. Do let yourself grieve as cookie mentioned.

    My situation was different as I had IDC as well as DCIS and knew I needed a bmx from the start. I really liked my breasts and my ps even noted that I had “youthful breasts” on his initial exam notes. Cancer allowed me to put all vanity aside and focus on the most important thing, my health. I did however know that I wanted immediate reconstruction. That is a very individual decision but I did what was right for me.

    Don’t go overboard on purchasing too many specialized post mx items. Some are needed for very short periods of time and many of your needs may be accommodated by things you already have. But, if you want all that stuff, that’s fine too as once again, do what’s right for you. I should add that even though I had a bmx with one step implants, no te’s, recovery was less painful and far easier than I had imagined. However be prepared for whatever needs you might have as everyone’s recovery varies. One more thing, your insurance may cover some items. Mine covered a nice front button post surgery bra and a cami with drain holder pockets (which I used for only 10 days). Take care

  • flowergirl1975
    flowergirl1975 Member Posts: 57
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    @dogmomof2 - I went through something similar. I had two lumpectomy's, each time thinking ok this was it, my cancer would be out. After the second time my path results came back with positive margins and extensive DCIS. I was emotionally tired. I ended up deciding on a double mastectomy because my cancer did not show up on mamo's or MRI, I wasn't willing to go through this again. Since my surgery I have not once regretted the decision. I know I did what was right for me. My body looks different than before obviously but it's my new normal, my breasts do/did not define me. I cried the day of my surgery, in the operating room actually….it was sad for me but something I knew I needed to do. Wishing you strength as you go through this!!

  • iamnobird
    iamnobird Member Posts: 229
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    I am sorry. I think changing and shifting diagnoses is the hardest part of this process. I was stage 0 DCIS as well and the only thing seen on mammogram and ultrasound was two spots of calcification, 6mm and 8 mm. They biopsied them and confirmed pure, grade 3 DCIS. It had a high ki-67 and was HER2+ so I was already fearing the worse. My MRI found that it was 9cm of DCIS so I also made the switch immediately to mastectomy. They also clearly felt that it needed to be done asap so I immediately met with with the reconstruction plastic surgeon and plans were made for my DIEP. It was overwhelming and there was very little time to think. I am happy to say that my surgery went well as did the reconstruction. I really barely remember that one is newly created most of the time. And they legitimately look so similar to each other. I was so scared the day of the operation. They actually gave me something to calm me down a bit while we finished prep before I went back for surgery. The best thing about it all was that you literally fall asleep and wake and it is done. It is such a relief at that point. You can do this and you will be okay. ♥️

  • dogmomof2
    dogmomof2 Member Posts: 7
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    @cookie54 Thank you for your thoughts. I do appreciate your sharing your experience and I do not want to continue the cycle of breast biopsy, worry and stress, and all the waiting. It has been a lot, I can only imagine going through it 8 times. I appreciate the long term perspective.

  • dogmomof2
    dogmomof2 Member Posts: 7
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    @exbrnxgrl Yes, it is a big mental shift. I am trying, as you suggested, to focus on health versus appearance. I am trying to consider the long term outcomes here and how I do want to live a long life (my mom died at 53 from cancer and it is so tragic to think of how young she was and how much she has missed out on). Thank you also for the suggestions related to mx items. I started looking and who knew how many specialized things they have for mx and mx recovery.

  • dogmomof2
    dogmomof2 Member Posts: 7
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    @flowergirl1975 That was my exact worry before the dr recommended mx. The BS first said he would do lumpectomy and it might turn into a mx if he couldn't get good margins. As I am thinking about it more, I may have experienced more suffering if I went that route versus working to accept mx now. I am also considering a bmx – I am still waiting on genetic results which could influence my decision. Thank you for highlighting the importance of listening to what is right for you.

  • dogmomof2
    dogmomof2 Member Posts: 7
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    @iamnobird Your experience sounds really similar to mine as far as initial size and plan for lumpectomy to then an identified larger size and mx. I am also considering the DIEP reconstruction. Thank for sharing that you were afraid. I am noticing some fear as well – particularly about prognosis and if there may be an invasive cancer, and then how it will be to go through reconstruction. I’m wondering if you might be willing to share what recovery from DIEP was like?

  • iamnobird
    iamnobird Member Posts: 229
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    @dogmomof2 Yes. I am happy to share that my surgery and recovery went really smoothly. I am very happy with my results and really only found the first day or two tough. After day 3, it got better every day. It is a long surgery, but I am so happy that I did it. My body looks and feels like my own.

  • probablynot
    probablynot Member Posts: 2
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    @dogmomof2

    In 2018, I felt a small lump (about 10mm) in my left breast. The biopsy confirmed it was low grade DCIS, so I expected a lumpectomy. They gave me an MRI to verify there it was the only spot. Unfortunately, the MRI showed a second spot in a different quadrant of my breast. I had to have a mastectomy since the DCIS was in multiple quadrants and multi-focal (largest dimension about 8 cm).

    About once a month I wondered whether I should have insisted on a lumpectomy. When that occurred I reminded myself that:

    1. The mastectomy meant I did not have to have radiation. Having radiation on the left breast increases the risk of heart issues (e.g., heart attack), so I avoided that by having a mastectomy.

    2. One of the two spots was very close to my nipple, so I still would have lost my nipple even if I had a lumpectomy.

    3. Some of the women's stories I read on the internet were from women who regretted having a lumpectomy because the surgeon had to remove about half of their breast and they were unhappy with the appearance. This is more of an issue for women with smaller breasts. I likely would have had that issue since the DCIS spanned about 1/3 of my breast.

    4. I found a news article about a clinical trial. They interviewed medical researchers conducting clinical trials to see whether DCIS is over-treated. Even the medical researchers who think DCIS may be over-treated emphasized that women with multi-focal DCIS or DCIS in multiple quadrants should consider having a mastectomy.

    5. The breast health center changed the software for their patient portal the day before my MRI results were obtained. The initial settings allowed me to access not only my MRI report but the surgeon AND the radiologist notes about my MRI. The radiologist stated that a lumpectomy would be risky since the DCIS was so extensive. I was re-assured that multiple doctors thought a lumpectomy would be risky, it was not just my surgeon's professional opinion.

    6. About 15 years ago, I attended a women's music festival where some of the women were topless. One topless woman had a right-breast mastectomy without reconstruction. I thought she was very attractive and that she would not be any more attractive with two breasts instead of one. (I naively did not consider that I would be the one with the mastectomy!). That experience has helped me so much to NOT feel too self-conscious about my own mastectomy.

    I opted to not have reconstruction.

    It is my understanding that the risk of recurrence after a mastectomy is between 1% and 6%, depending on what assumptions are made. In 2021, I was diagnosed with invasive breast cancer on the mastectomy side. I stopped wondering whether I could have gotten by with a lumpectomy in 2018. :-)

  • recoveringbelle
    recoveringbelle Member Posts: 23
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    I know it's a shock, but these days w/ the reconstruction options it is so much easier, at least on the vanity front. The sensation part and the shock of the invasiveness of it is hard. I understand why you're going through that. I refused to even look at my L breast while I was in the hospital, after I woke up . . . I pretended that side of my body didn't exist, and smiled through it around relatives. I had bandages on (and drains), so ultimately I had to . . . but seriously, the implant reconstruction at 39 gave me Barbie breasts that, being a size 2, gave me more male attention than I'd had in 15 years. That shouldn't matter—but it means that it's not the horrific "unfeminine" dx it was 50 years ago, as so well captured by Barbara Bel Geddes on Dallas (she'd actually had a mastectomy, and had a role in getting that story line out to millions of viewers).

  • snm
    snm Member Posts: 95
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    Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange

  • snm
    snm Member Posts: 95
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  • softness1
    softness1 Member Posts: 100
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    i had a bilateral almost 11 yrs ago. I was terrified. I would suggest sleeping in a comfy recliner. I didn’t have one at the time so I rented one from Rent A Center for 3 weeks. It reduces the strain of pushing off the bed to get up. Hit the remote on the recliner & up you go. I rented an oversized fluffy recliners that i added a bunch of pillows and covers. Very comfortable. Get a robe or pajamas with pockets to put your drains in. Also get button up PJs so you’re not lifting shirts over your head. I popped a Xanax for my anxiety & stayed ahead of pain by taking my meds as prescribed. You got this!

  • bennybear
    bennybear Member Posts: 245
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    wishing you the best. I had a lumpectomy with radiation, then a local recurrence so had to have a mastectomy. Five years halfflat. This year another cancer and mastectomy. I think avoiding radiation is a good thing and somehow the symmetry is easier as I was large breasted.