Please help with reconstruction

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Bubblybubbles_1
Bubblybubbles_1 Member Posts: 38
edited September 2018 in Breast Reconstruction

I am going through my 7th round of chemo. 1 more to go and i will have surgery in early November. I have had genetic testing done tbat came inconclusive and no one knows that with my gene , what is the rate of cancer coming back. After very long amd careful research, i had a chat with my oncologist yesterday and i choose to go ahead with bilateral mastectomy eith immediate reconstruction. I still have 2 appointments(with surgeon amd radiologist) before i make the final decision which surgery options are right for me.

Here is what is bothering me. I am not sure whether to go for deip flap surgery or have implants. I know this is a personal decision but i have 4 month old baby( and a 7 year old) and she will be 6 months in november. I have no one to take care of me (except my husband) in this country. So my sister and sil are flying from overseas to help out for 1 month. Considering this and the physical recovery, my family is pushing me for deip flap surgery as they do not want me to have silicone implants. Honestly, i know nothing in details about implants. I have seen a youtube video of deip flap suegery but thats it. So both surgeries, no real knowledge. I really need your inputs. I have been going through lots of posts here to get me idea but its time i need some of your experiences for both. I respect your choice of surgery and will not judge. Any help is appreciated.

Comments

  • WC3
    WC3 Member Posts: 1,540
    edited September 2018

    Bubblybubbles_1:

    I will be having surgery soon as well. I am leaning towards DIEP flap even though it is more invasive because, and no offense to any women here who have implants, but foreign objects in my own body weird me out (not that tissue grafting doesn't) implants may require removal years down and I may not have the means to have them removed by then, and I do want at least some sensation if possible.

    However I am single and have no children and I think if I had children I would lean more towards implants if I did any reconstruction at all because the surgery is less invasive and my priority would lean more towards being there for my children.

  • Vermonster
    Vermonster Member Posts: 44
    edited September 2018

    Hi Bubbly - I am new to implants - I am 7 weeks post-surgery (bmx with dti reconstruction with tearshaped gummies) and I had my ovaries & fallopian tubes out (laparascopically) that same day. Obviously I can't compare firsthand to a flap surgery, but factors that informed my personal decision not to do a flap reconstruction were my aunt and a cousin's experiences and how long the flap surgery would take compared to implants. Being under anesthesia for the estimated 18-20 hours for my total surgery was just too much. My aunt continues to have problems from the muscles cut for her tram flap (balance, strength) and she's 16 years out from surgery. My cousin just curses and was really happy when I chose implants. For me, I decided that the shorter surgery, quicker recovery and less cutting of my body was preferable. So far, I'm ok with how the implants have turned out (cosmetically, in a blouse they're great - naked, I'm still adjusting). They still feel foreign much of the time, but I already have regained a lot of range of motion and am cleared to resume normal activity. I'm sure others will chime in with their experience and hopefully you will have enough to make the choice that's right for you. Good luck!

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

    My choice for implants was basically because it was the quicker option. I was a candidate for skin and nipple sparing, direct to implant. It was a four hour surgery to do the BMX and recon. I have not had any further surgery and am pretty happy with the results. Nothing is perfect and sensation will be lost with either surgery. I've regained some feeling, however.

    My thought was to do what I could do most easily and if I ended up unhappy with it - then I could do something else later. I was 50 at the time with three kids in three levels of school. It was important to me to be present for them, especially after missing out on some stuff during chemo.


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

    DIEP flap uses no muscle so not the same as TRAM flap-don’t let anyone do TRAM on you. I did immediate DIEP at same time as mx. I have soft, warm, natural looking and feeling breasts that feel like part of me (because they are!) I’ve been able to look in the mirror since day 1 without having to adjust and today (18 months from stagecoach 1, 9 month some our first ftom stage 2) you can’t even tell I had anything done. I’d have to show you where to look for the scars. With all that being said you need to do your research on the docs that do DIEP and pick the one with the outcomes you want to have for yourself not just the closest or the least amount out of pocket or one that’s in network. I traveled to NOLA for it and have 0 regrets.

    Here's a link to their website (keeping in mind very few PSs have results like theirs)band a link to a YouTube video called 'I wish I'd Known' that's very informative (it's all the good stuff the docs tell you before surgery but more importantly it includes the not so good stuff they don't tell you). It can help you make an informed/educated decision.

    www.breastcenter.com

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

  • Runrcrb
    Runrcrb Member Posts: 577
    edited September 2018

    what Lula said regarding tram flap.

    I have friends who had bilateral mastectomy with implants and are happy as can be years later. I have friends who did the same and wish they’d jusy gone flat. I had single mastectomy with DIEP 15 months later. My DIEP recovery was easier than the mastectomy.

    Things to think about

    How active are you? Otherwise healthy and active usually results in fewer complications and faster recovery

    If you work out- swim, strength, yoga etc and your implants are under the pec muscle you will feel it every time you use your pecs. I felt my pec crushing my tissue expander every time i used my right arm

    Try not to make a decision that lasts a lifetime based on your short term situation (young children for example).


  • star2017
    star2017 Member Posts: 827
    edited September 2018

    I was pregnant and had small children when diagnosed and my ps recommended implants over diep for that reason, because the diep would have a longer recovery time. He could tell too that I was on the fence. If I felt strongly one way or another he would've gone with it

  • Bubblybubbles_1
    Bubblybubbles_1 Member Posts: 38
    edited September 2018

    Thank you everyone.

    Wc3 : i think my reconstruction decision is because of i dont wake up with breast of some sort, i will loose self confidence all together. Plus, i am 35 years old and imo its too early to go flat. If i were like 55 or something, i would proudly just go flat. I am on a verge of loosing my mind with treatment and sleep deprivation with new born and i do not want to loose something permanently.

    Runcrb : so true about making decisions based on long-term effects.

    Star2017: aah, such a hard time you had with pregnancy and newborn. My diagnosis was after 10 days post csection when i had blood in breastfeeding. My doctor looked at the lump (which i thought was a Milk duct) and immediately said to get further testing done. 1 month post partum and i was getting my first chemo. I know what you went through and it is never a good time to get cancer in your life. It makes it harder to have it with newborn.

    One question to everyone with implants? Did you giys go ahead with radiation? How did it effect the shape? Mine is saying that they dont recommend due to bad cosmetic results of the breast

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2018

    I will tell you my physical health other than cancer was excellent. I was 53 with no one to take care of my DIEP on left side was easy to recover from. I really wasn't uncomfortable but my mother was doing all the work making food everything. All I did was eat, sleep, talk on the phone and watch movies. She would yell at me if she saw me reach for anything.

    No complications healing fine, started driving 1 month after surgery no problems at all. I looked good. Joined LA fitness 6 weeks after surgery started swimming. I also was doing treadmill before diagnosis. After maybe 6 weeks back on the treadmill.

    My plastic surgeon said I was on the top of his list as excellent results with no problems. I thought an implant would drive me crazy especially if I could feel or move it. My DIEP breast feels and looks like my real one. I will say there is loss of sensation in the reconstruction but it is still coming back after 7 years.

  • WC3
    WC3 Member Posts: 1,540
    edited September 2018

    Bubblybubbles_1:

    That's similar to the reason I am doing reconstruction. I'm 38 and single and I would like some potential for a relationship.

  • star2017
    star2017 Member Posts: 827
    edited September 2018

    I had my implant placed before radiation. So I had mx with te, then chemo. 4 weeks later I had the exchange surgery ( plus prophylactic mx on the other side). Another 4 weeks and I started radiation. My ps said if the timing was ok with the oncologists he preferred not to operate on radiated skin due to healing complications. The radiation does not seem to have affected my implant in any noticeable way, tho the risk of capsular contracture is there.


    I’m glad you were able to discover the tumor. I was diagnosed a year ago, around 30weeks.It’s so hard with young kids, but it also helps to distract and keep me focused on the future.

  • Bubblybubbles_1
    Bubblybubbles_1 Member Posts: 38
    edited September 2018

    UPDATE

    I had a chat with my surgeon yesterday. With my brca1 gene testing being inconclusive, he is suggesting either lumpectomy or mx (depending on what i choose) + full node dissection + radiation.

    I told him that i want to have double mx with immediate breast implants done instead, he said the plastic surgeon will not agree as it is a very risky procedure with radiation coming up. I am so devastated but relieved to have lumpectomy.

    What should i do? He mentioned to talk to PS for me this week and see if he agrees. If not, i am scheduled for lumpectomy on Oct 18th.

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

    that may be your sign to maybe go DIEP flap instead of implants...

  • Bubblybubbles_1
    Bubblybubbles_1 Member Posts: 38
    edited September 2018

    lula : thanks for your quick reply. I asked that to my doctor and he said that PS will say no to immediate reconstruction overall (implants or tissue recon) I wish though that you were right. I would have gone with diep flap recon.

    I just don't understand why doctor is saying no when i am ready for the big suegery. After reading different posts here, it seems like people do that often.

  • WC3
    WC3 Member Posts: 1,540
    edited September 2018

    Bubblybubbles_1:

    I think the radiation will impair healing of any reconstruction.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited September 2018

    i was a candidate for any reconstruction i chose but knowing radiation was on my treatment plan my PS wouldn’t have done anything other than tissue expander with my mastectomy (had mastectomy prior to chemo and radiation). Radiation did a number on my breast (happy to pm pictures) and with diep i was able to address the damage. I would have been pissed to do full reconstruction and then have radiation ruin it

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

    BS does not make that decision, PS does. If there is one thing I've learned from this journey is that no one except the microsurgeon who does DIEP can tell you if you you're a candidate and in what order they prefer to do the recon. Many microsurgeons prefer to do DIEP prior to rads as the tissue is damaged by rads and tends to have healing issues. They do the big surgery first then you have rads then they fix anything rads damages (which is a much easier surgery). Have you called NOLA by chance? They have hands down the most experience with DIEP pre and post rads and they do an all in one surgery. www.breastcenter.com

  • DATNY
    DATNY Member Posts: 358
    edited September 2018

    My heart goes to you. This should be a time of pure joy....but you'll get out much stronger from this experience.

    I don't have much to say about reconstruction, but wanted to throw in a flat opinion. I went flat (44 at diagnosis). I think that people don't really notice (I had a D cup prior surgery). My husband still sees me, for who I am. I don't wear prosthesis, just a regular sports bra. I had BMX, so things are symmetric.

    Why don't you delay the reconstruction, see how you feel and later do it do it in a way that works best for you. Mastectomy and reconstruction so soon after delivery is a lot to deal with.

    Interestingly enough, turns out that younger women appear to have a higher rate of going flat than older ones. I think is a mind set, sort of a "girl power" thing, or "I am more than just a breast".

    Whatever you chose, may you be happily ever after and soon forget this ordeal. God bless!

    Edited to add that I think you will need radiation. In this case, many surgeons will refuse putting implants, because the failure rate due to radiation is high.

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

    Bubbly - Why do they think they need to do full dissection of lymph nodes? Most surgeons start with SNB first and do anything further only if needed.

    I had two suspicious nodes upon diagnosis. One was biopsied and found to be negative. The radiologist termed it as "discordant" at the time. But the pathology from the surgery showed no cancer in the SNB nodes and I didn't require radiation with a BMX.


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