To remove or not to remove..... that is the question

MrsMac
MrsMac Member Posts: 3 ✭
in General discussion
Hi all,  I am 2 years post diagnosis.  Left Mastectomy, Chemo, Radiation, Oophorectomy and taking Exemestane.  I looking for advice from anyone who decided after treatment was finished instead of a reconstruction have the other breast removed for "evenness".  I believe that the reconstructive surgery would be a pretty long operation as I don't have enough skin to simply slip a implant in.  I just think it would be simpler to remove the other breast but any advice on either the pros or cons of this option would be greatly appreciated.
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  • FLClover
    FLClover Member Posts: 1,573 ✭
    Hello @MrsMac,
    Is your skin too thin for an implant? What about having an implant with some lipo? I’m not sure if that’s just for a more natural look, or if it would help the skin support the implant. 
    Heaps of ladies on here have had the flap (or similar) surgery with your own fat, and from what I’ve read none have regretted it, even though it is a long surgery with also long recovery. 
    I personally wouldn’t do the flap reconstruction as I don’t like surgery at all, let alone such a long one. I have expanders atm, had radiation 3 months ago and am just healing to see if my skin will also be strong enough for implants. If it’s not, then I will opt for simple mastectomies. I think con of a simple one is mostly just that you will be flat, but that’s not necessarily a con. 
    Anyway, I haven’t got much experience with it, this is just my opinion, so maybe someone who knows more can help you out. Good luck with your decision 🍀❤️
  • ddon
    ddon Member Posts: 349 ✭
    I had a right mastectomy 1 year ago, no reconstruction and am now two days post L mastectomy and I don’t intend to have reconstruction. I am just not interested in any more surgery, especially surgery that isn’t strictly necessary. My body and family have been through enough. Loving my even flat chest. 
  • Afraser
    Afraser Member Posts: 4,441 ✭
    I’ve been mono-boobed for eight years. I use a prosthesis as my remaining breast is fairly large and I don’t particularly want to look lop sided when dressed (totally OK about it otherwise). I’d probably need to change most of my wardrobe if I went flat! I live in Melbourne so haven’t had any problem regarding humidity, which may make a prosthesis less comfortable in tropical zones. I put it in my bra of a morning and forget about it. There is nothing to indicate any propensity for cancer in my other breast (more than the normal!) according to my oncologist and as I had a persistent, large seroma for 12 months, I am not keen to do further surgery unless really necessary. It’s a personal choice about what suits you. Always good to get other opinions but do what feels right for you. Best wishes. 
  • ddon
    ddon Member Posts: 349 ✭
    One thing I forgot to say - I feel that my prognosis isn’t great because of the extent of spread in my lymph nodes and so time feeling well and normal is important to me. If I hadn’t had lymph involvement and felt like I could have a normal life span in front of me ( I am an otherwise fit healthy 47 year old) then I might feel very differently and want reconstruction. Circumstances play a big role is decisions you will make. What are pros and cons for one person will be completely different for someone else. Best wishes with your decision making. 
  • Deanne
    Deanne Member Posts: 2,163 ✭
    edited October 2020
    Hi @MrsMac,
    I also had a left mastectomy, chemo and radiation 7 years ago and then had my ovaries removed 2 years later. I just had my right breast removed 2 months ago after a scare with mammogram/ultrasound this year. No cancer was found thank goodness.

    After I finished treatment back in 2013 I just did not want anymore surgery at that time. I managed very well for 7 years with the one but must say I am enjoying being ‘even’ now.

    It is all such an individual thing and the main thing is to do what’s right for you at the time. I enjoy feeling well, fit and healthy, so for me, minimizing the surgery has always been my aim. I am happy with my choices. If you want to know any further details I am happy to personal message.

    Best wishes with your decision.

  • MicheleR
    MicheleR Member Posts: 352 ✭
    Hi, im not up to reconstruction. I had skin saving surgery to allow for a reconstruction if I want. Right now I feel that I don't want to put myself through future surgeries and the idea of doing anything to my as best I know healthy breast is a bit abhorrent although I understand why others do. 

    Yesterday I got an amoena prosthetic to even up. I was pleasantly surprised how light it is. I also splashed out an extra 100 to get one with a pump which allows you to get a good fit against your chest wall and can adjust cup size with weight changes. As it sits in the bra pocket I think it will not be sweaty.  

    You are probably well past all this and know what you feel will work. Maybe have a consult with a surgeon and ask all those questions about skin. I am thinking when I am able I will do this. If they can some how do a key hole inflation (seems unlikely) I'd consider. If there is months of pain ahead I'd want to be able to compare to original mastectomy. 

    I joined the restructure group but im not ready to interact yet. 

    Michele
  • Glemmis
    Glemmis Member Posts: 343 ✭
    Hi @MrsMac, I had left mastectomy in 2016, followed by chemo & radiotherapy & Letrozole. In 2019 I had the right breast removed followed by double DIEP. I always wanted the other breast removed as was worrying about another cancer & decided recon at the same time was a good idea. It was a long surgery, 12 hours, but I am very happy with the results & it has helped me to move on. No more mammograms, just a yearly ultrasound. Good luck with your decision!
  • ddon
    ddon Member Posts: 349 ✭
    @Caz1 - thank you. Recovering well. I came home with my drain which will hopefully come out tomorrow. I dont have my pathology back yet which is anxiety- producing.  I think sometimes for our surgeons - mine anyway, they want to save our breasts or replace them thinking it is important for self esteem etc. And I understand that and am grateful that they feel that way, because I loved mine and wouldn’t have willingly given them up before. But they lost their appeal when they turned nasty and now my flat chest suits me fine. Never wearing a bra again, never having another mammogram 😀 excellent !!!
  • Caz1
    Caz1 Member Posts: 382 ✭
    edited October 2020
    @ddon good to hear you are doing so well  :) Yeah my breasts lost their appeal when they tried to kill me! My onco says you know you have made the right decision when you wake up every day and think the same way about it.  I’m almost there....Do you mind me asking, was it a medical or an aesthetic reason for you to go flat? ( both valid )

    PS I hate drains with the fire of a thousand suns :(

  • ddon
    ddon Member Posts: 349 ✭
    @Caz1 if I could have had mastectomies and immediate recon I maybe would have but because of disease being missed on scans, and extra surgery and the need for immediate chemo recon was going to be something down the track. As time has gone on I have just felt I have had enough. My surgeon tells me if I change my mind I can still get it done but I know I won’t. I am content with how my chest looks - it’s very neat and flat ( I struggled to fill an A cup before) and I just don’t want to put my body through anything else that’s not strictly necessary. 
    When I first got cancer, and for months during chemo, I didn’t want to stand out - I wore a wig, padded my missing breast area and tried to not look any different. Now, I have accepted that I have been through a trauma to mind and body and I no longer feel the need to hide it. This is me. Battered and bruised with body parts missing, always braced for the next blow of bad news. 
    And as a side note - I hated my drains with my first two surgeries. This one I have now is a breeze. I am sick of carting it around and sleeping with it but it’s not sore or causing me any problems. Hoping it goes out tomorrow - day 5. It’s all getting itchy. 
  • Gavroche
    Gavroche Member Posts: 31 ✭
    Hi @MrsMac,
    This is such a personal and difficult decision.
    My cancer was in my right breast only. However, after a lumpectomy and then re-excision, still couldn't get clear margins, so a mastectomy was needed. After the Endopredict test, it determined that I needed chemo as well and this was scheduled prior to surgery. So I had 5 months to consider all the issues and lot of nights sobbing into my pillow!
    I did an enormous amount of research. As @Caz1 i mentioned, there are several Facebook groups: Fabulously Flat - Unreconstructed Breast Cancer Survivors, Fantastic Flat Fashions, Flatties Unite.
    Although these groups started in the US (and sometimes a bit too "thank the Lord"), the membership seems to be pretty international. I found lots of excellent advice, lots of tips about dressing as a flat chested-person.- fashion is important to me. It was quite inspiring.
    I also changed breast surgeons. My initial surgeon pushed implants, which, given all the associated health issues, I didn't want. Both implants and diep flap seemed fraught with potential other issues and ongoing surgery. The option of being a uni-boober seemed inconvenient and uncomfortable.
    So I opted to go flat. As well as a breast surgeon, who did not try to talk me out of my decision, I also engaged a plastic surgeon to ensure an aesthetic flat closure. They worked together during the 4 hour surgery. The plastic surgeon, not covered by insurance, was $1200. My surgery was mid-April and I had 5 weeks of radiotherapy starting 1 June.
    I am very pleased with the results. In fact, in some clothes I look better than when I had my 34D breasts! Perhaps I was lucky that I live in the Blue Mountains and so had all of winter to get used to my new shape rugged up in jumpers. Of course I was initially self-conscious but then I realized that no one notices! People are caught up in their own life.
    Now it's summer and some clothes definitely look better with inserts in a bra. There are many alternatives to traditional prosthesis. I absolutely love Busted Tank bras. Brilliant designs, buttery soft fabrics and the inserts are just $15. There's also Fuuk Cancer, started by an Australian, flat chested woman. I have a couple of her bras and they are also great.
    One issue of going flat that women report is "Buddah Belly", i.e. after your breasts are removed, your tummy is more apparent! I am lucky that I am pretty athletic and have a small tummy. This isn't an issuer (However, I think it is absolutely crucial to exercise daily).
    I should also say that I haven't had an "emotional melt down". Perhaps because I had many months to consider and research plus I had a supportive medical team. This doesn't mean I don't miss my breasts - I do. But I feel healthy and comfortable and look good in whatever I chose to wear. As another person wrote, breasts do not define a woman and being flat has not compromised my femininity.
    Happy to discuss more if you want to send me a private message.
    I wish you all the best.

  • Caz1
    Caz1 Member Posts: 382 ✭
    @ddon I so know that feeling of having had enough.  It’s really taken 4 months to get back to feeling normal after my surgeries and cellulitis. And I’m on oral chemo now too as an insurance for six months too. Bit sick of the endless hurdles. I think I just want to get the boob off and be done.
    I can’t even even do it till middle of next year till I’m off the chemo.  :(

    And I was like you -hiding my baldness, then new grey regrowth and I’m still a bit conscious of my one boob but not as much now , ( I’m working on this ).
    I’m proud of my body ;it’s got me this far.I’m a survivor, and ready and hopefully ready for what life throws at me!  If other people can’t deal with that , it’s their problem. 


    Its so nice to talk to someone with the same perspectives and feelings.  Thankyou. 
    Caz xx
  • Caz1
    Caz1 Member Posts: 382 ✭
    @Gavroche, will have to look up those groups too.  Fashion is important to me too! I am doing way too much research and often go down insta rabbit holes , eeeeek! So much inspiration out there.
    Its interesting that you had a plastic surgeon at the same time.  Hmmmm, another thing to consider!!!!

    Caz xx

  • Gavroche
    Gavroche Member Posts: 31 ✭
    Hi @Caz1  - thanks for your message. I'm finding halter necks, ruffled shoulders and patterns work a treat.  In the past I've been a solid colour person, but I'm really enjoying trying out these new styles. I've found fab pieces on eBay.
    About the plastic surgeon - this is pretty common in France and the USA. Both my breast surgeon and the plastic surgeon were surprised at this request. (Perhaps the breast surgeon was a tad offended even. And the plastic surgeon hadn't worked with a breast surgeon before on a DMX). However, they knew each other - they share rooms at St Vincent's Private Clinic in Sydney.
    Having seen images of truly ghastly mastectomies - lots of flesh left behind and dog ears - I wanted piece of mind, knowing 2 experts were "working on me". The breast surgeon bulk-billed for the entire operation and I thought that $1200 was a reasonable price to pay for that piece of mind. My scars look good - from the beginning I haven't been scared to look in the  mirror.
    xx

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