What would you do?

urmysunshine17
urmysunshine17 Member Posts: 15

I’m sure this has been posted many times. I know the research, I’m just having a really hard time making a decision.


I get surgery after chemo. Tomorrow is my appointment with the surgeon to discuss lumpectomy vs mastectomy. I’m 32, no genetic involvement. Before me there was no family history. Now there are 3 women on my mothers side, myself included. The cancer is aggressive. But it is localized with no node involvement. My breasts are prone to growing things anyway (I had a giant fibroadenoma removed 2013). I’m leaning towards mastectomy with reconstruction... to hedge my bets and to not live in fear.


What have you all decided and why? What would do you? I’m having difficulty coming to grips with the loss of my breast(s), not having sensation there, etc. it’s causing me a lot of anxiety

Comments

  • basic_bee
    basic_bee Member Posts: 7
    edited August 2018

    Hello! This is a difficult decision to make, I agree. Initially, I felt like you, I wanted the bilateral mastectomy with reconstruction. However, once I learned that I had to get chemo no matter what my surgical choice was, I changed my mind. I, too, was scared by the total loss of sensation. I was also scared, not of the mastectomy itself, but the recovery process and the many steps it would take for the reconstruction to finish. Finally, what pushed me over the edge was the thought of having to live with the implants and the potential complications they could bring. Not to mention the need for replacement 10 to 15 years down the road.

    This was just my thought process though. And, I didn't have the option of the implants being placed on top of the pectoral muscle either, which I believe really changes the reconstruction process. I'm also HER2-, so in the end I decided to do a lumpectomy followed by radiation even though my nodes all appeared clean in my pre-surgical scans.

    Good luck to you!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    It is very individual but I didn't think twice. I won't go mastectomy unless/until it's my only option.

  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    I chose bilateral mx with immediate DIEP flap reconstruction. Like you, I already had a fibroadenoma removed and had micro calcifications in the other breast. Being able to avoid rads by doing mx was a big plus (not everyone can do that so check with your doc). I was able to do skin/nipple sparing mx. I went into surgery with breasts and came out with breasts and a flat tummy. I no longer have sensation in my nipples but they do react to touch and cold. I have feeling in the vast majority of my breast skin so I can feel when my husband touches me. I can feel pressure too. My scars are minimal and can't be seen unless I point out where to look (I'm 10 months out from last surgery). My breasts are warm and soft. They move with me and will age with me. They look and feel natural. They feel like me because they are a living part of me. I have no regrets whatsoever on choosing bmx with DIEP recon and would do it again in a heartbeat. It can be difficult to find a PS that not only does this recon but also does it well. I traveled to New Orleans to the center for Restorative Breast Surgery (one of the top centers worldwide for this type of surgery) for it and it was 100% worth it. Women have traveled there from all over the world to have their recon done/corrected there. Here's a link to the center's Website and to a 2 part video series called 'I wish I'd Known' that is great for anyone considering mx and recon no matter where you're having it done and what kind of recon you're having done. I hope this helps!Feel free to ask any questions!

    www.breastcenter.com

    https://www.breastcenter.com/2018/05/01/i-wish-id-known-dr-ordonye-speaks-to-ypo-about-modern-breast-cancer-care/

    '

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    I had a very similar diagnosis as you. I was leaning towards LX throughout chemo but ended up changing my mind. It's a super hard decision to make. There were many times that I wished that it wasn't mine to have to make!

    My biggest concerns that drove my decision - worries about the amount of breast left after LX, worries about the effects of radiation and "using up" that treatment, an area that they wanted to continue to "watch" in the other breast, concerns about symmetry - and - while not proven by research, a desire to do all I could in the hopes of never doing any of it again.

    I had negative genetic testing and had only had one great aunt with BC at an older age. But - I also had an aunt with ovarian cancer, a grandmother with pancreatic cancer, and several uncles with prostate cancer. I was diagnosed on the younger side at 50 and felt that I had many years ahead of me to possibly face it again.

    I don't know that I would have gone through with it if I would have had to have multiple surgeries, though. My second opinion BS recommended my PS and I was able to do a "one and done" surgery. In four hours, she removed the breast tissue and sentinel nodes and he placed implants above the muscle. I had two drains for six days.

    It was hard but not unbearable. There were times that I second guessed my decision. I did grieve the loss of my real breasts and I still miss nipple sensation. But - I look really very good without any further surgery and I regained some sensation (mostly around the edges). I was lucky to be a candidate for nipple and skin sparing.

    Implants don't have to be replaced unless there's a problem and they are lasting much longer than in the past. They also have many more options than before. I never considered using another part of my body to create a breast.

    These are very difficult decisions to make and each woman has her own nuances that she brings to the process. There really is no way to know how you'll feel later about it. It's strange to me how some people just "know" what they'll do right away - with confidence. That was not me at all. And yet, a decision has to be made.

    Good luck with making that decision. You just have to go with what you know right now and try to not look back.


  • urmysunshine17
    urmysunshine17 Member Posts: 15
    edited August 2018

    thank you for responding and sharing your story. I’m going through chemo now and am 2/3rds done with it. But as I am only 32 my chances of a recurrence or new cancer is fairly high. I envy the people who know exactly the type/ kind of surgery they will get

  • urmysunshine17
    urmysunshine17 Member Posts: 15
    edited August 2018

    @Ingerp, can you explain why you felt so strongly towards a lumpectomy vs mastectomy? I envy your decisiveness

  • urmysunshine17
    urmysunshine17 Member Posts: 15
    edited August 2018

    @NotVeryBrave, thank you for sharing your story and thoughts. Similar to you, they found something in my right breast as well and I had further workup... but as I also have extremely dense breast tissue, the MRI, mammogram, and ultrasound weren’t able to definitively tell me what it is. So it’s being watched.

  • urmysunshine17
    urmysunshine17 Member Posts: 15
    edited August 2018

    @Lula, thank you so much for sharing your story and thought process. It gave me quite a bit of peace of mind. I can only hope that if I do a mastectomy that I am a candidate for the same kind of reconstruction, as that was my hope. Thankfully I live very close to Boston where there is the Dana-Farber foundation, Brigham and Women’s,and great surgeons available

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    urmysunshine--I just didn't see taking any more tissue than was necessary. (Plus several friends have had reconstruction horror stories.) I'm sure you've been told that mx and lx+rads have the same recurrence probability. If I have a recurrence that makes mx necessary, I'm mentally prepared to go there, but so far I've always had lx as an option. I also don't think I'll have reconstruction if it comes to that. As one of my kids said this time around, I can just go through life as an Amazon. ;-)

  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    urmy- keep in mind that we’re (the ones who’ve replied so far) on the other side of the decision. We all started where you’re at on having to make a decision. Take your time and research your options for yourself. The video link I posted is a great place to start. I agree you’re young and have a lot of years left which may lean you more one way than the other. Some people look at longterm potentials and take action toward that now. Others look at short term, do the quickest option that handles the problem for today and figure they’ll tackle it again in the future if need be with more in depth treatment. There is no right or wrong answer. But there IS a right answer for YOU. An answer that leaves you with a feeling of peace. Do your own research on the options. Look at before/after photos including lumpectomy/rads and mx with implant and mx with natural tissue recon. Then once you figure out which option leaves you with a feeling of peace, stick to it (everyone second guesses themselves right before hand). You made it through chemo...no matter which decision you make, you got this!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Absolutely agree with Lula. I'm 60--definitely not terribly invested in look/shape of my hooters. It's most important to be comfortable with your decision and not second-guess yourself.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    Yes to many of the same things - dense breasts, concerns about the usefulness of imaging (I found the lump four months after a normal screening mammo), and stuff in other breast. There were three "things" found on pre-chemo MRI in the R breast. After chemo, only one remained. Did chemo cause them to disappear like the cancer? Was it lack of hormones? They did not appear concerning enough to biopsy before or after chemo, but I didn't want to continue to watch anything.


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