Forum Discussion

Chestnut's avatar
Chestnut
Member
22 days ago

reconstruction or remain flat?

Hi everyone,

 

Back in March, I had an ultrasound and a 3D mammogram because I experienced bloody nipple discharge. The ultrasound showed an abnormality in one of my milk ducts, so I underwent a small surgery. The pathology came back as DCIS and florid LCIS.

 

Shortly afterward, I had a second breast-conserving surgery (lumpectomy). Unfortunately, the pathology still showed extensive florid LCIS and positive margins. At that time, my doctor suggested starting radiotherapy after about a month.

 

However, before I began radiation, I had another episode of bloody nipple discharge, so I had a breast MRI. The MRI showed abnormalities in both breasts, and I then underwent biopsies. The biopsy results showed that I still have florid LCIS in my right breast, while the lesion in my left breast turned out to be a benign papilloma.

 

I also underwent genetic testing and transferred my care to Peter Mac. My new surgeon told me that I need a right mastectomy, including removal of the nipple. As for the left breast, we're waiting for the genetic test results. If the results are negative, the current plan is to only remove the right breast.

 

I have a fairly small chest, and to be honest, I don't feel a strong desire to have reconstruction. At the same time, I'm worried that I might regret not doing it later.

 

I'd really like to hear from people who have had a mastectomy, both those who chose not to have reconstruction and those who did. What were your reasons for your decision, and how have you felt physically and emotionally after surgery?

 

For those who chose reconstruction, I'd also love to hear from people who had autologous (flap) reconstruction versus implant reconstruction. What has your experience been like, and are you happy with your decision?

 

This is such a difficult decision, and hearing about your real-life experiences would mean a lot to me. Thank you so much for taking the time to share.

diagnosis

5 Replies

  • arpie's avatar
    arpie
    Member
    15 days ago

     Golly Gosh, Chestnut​, you've been thru the ringer already  :(  

    BCNA has 2 x private groups for Reconstruction and those choosing No Reconstruction.   By joining both these groups, you will be able to chat with other women who went thru the same decision making that you are now going thru.    Click on each link & 'ask to join'.   I believe there may also be 'before' and 'after' pics too xx

    No Reconstruction:
    Group: Flat Chat - no breast reconstruction | BCNA Online NetworkGroup: Flat Chat - no breast reconstruction | BCNA Online Network

    Reconstruction:
    Group: Choosing breast reconstruction | BCNA Online Network

    You could also have a chat with the Mods on the Help Line too on 1800 500 258 (Mon-Fri, 9-5)

    Take care & all the best xx

  • Sunflower67's avatar
    Sunflower67
    Member
    16 days ago

    Hi Chestnut​ Welcome!  :)

    I was diagnosed with breast cancer in one breast in 2018. I chose to have a double mastectomy and no recon. I had larger breasts and honestly, I'd never felt comfortable with the attention I'd received from random men. My husband was happy for me to choose whatever I felt was best for me.

    I've never regretted my decision and have never worn prosthetics or anything. A couple of months after surgery, I had a build up of fluid (seroma) in one side and after being drained by the nurses  and returning a few times, I had to have surgery to remove it. But that was the only complication. 

    Talk with others who have had the different surgeries and then trust that you know what is best for you. I had my first surgeon try to talk me out of this so I changed surgeons and my 2nd one respected my reasons for choosing a DMX and staying flat.

    All the best, whatever you decide. Please let us know how you go. 🙂

    Mel xx

  • Sheila_'s avatar
    Sheila_
    Member
    21 days ago

    Hi Chestnut​ 

    I had a double mastectomy and DIEP flap reconstruction in February - my diagnosis was grade 2 DCIS on the left breast. I don't carry the BRCA gene. 

    During my decision process I did some research about the options available, including flat closure. I watched a documentary on ABC iView Compass - The Breast Decision, which I highly recommend.

    In the end I made the decision to remove both breasts and nipples as the one on the left could not be spared. I was a size 12B before surgery. The reconstruction DIEP flat was done during the same surgery - total of 7.5hrs and I stayed in hospital for 7 days. The drain tubes were removed from my breasts on day 5 and the negative pressure drain on my tummy was removed on the day I was discharged (this depends on your recovery, but thought to give you an indication of timings)

    From the moment I woke up and saw my breasts, I knew I made the right decision, no regrets. The recovery is slow, at times painful, I won't lie. I started physio straight away at the hospital then home followed by appointments with an Oncologist physio which I'm still seeing once a month. The tummy area was the most challenging one for me - you can walk straight for about 6-8 weeks but eventually with daily exercises at home it stretches and you see progress everyday. I went back to pilates by week 14.

    The numbness takes a while, I still don't have full sensation in my breast and some numbness in my tummy. The scars are still red but I can see it is starting to fade in some areas. I'm married and my husband looks at me the same way as before and despite not having much intimacy lately, he has been very complimentary of the 'new boobs'.

    I look myself in the mirror and I feel good most days - on occasion a have a bad day and looking at the scars it reminds me of how much my body has endured and how grateful I'm to be alive.

    I also had 4 x rounds of AC chemo, a decision I made with my medical team based on my Prosigna test results. I'm still recovering from it as my last session was 2 weeks ago. 

    I hope I haven't shared too much and remember, everyone's experience will be unique and your decision is yours and there is no right or wrong.

    Good luck and we will be here for you x

  • Afraser's avatar
    Afraser
    Member
    22 days ago

    Hi

    I had a mastectomy nearly 14 years ago and have remained mono-boobed ever since. Lots of women never have reconstruction, for all manner of reasons. I just didn’t fancy it - a fake boob on the outside was fine (I’m a 16 DD!) but not on the inside. I’ve never regretted it. Had I been small breasted my decision would have been even faster. I wear a prosthesis, don’t find it difficult or uncomfortable ( I accept that some women in very humid climes do) and I get almost the full cost of the prosthesis rebated every two years. 

    My surgeon was keen to do reconstruction and would do it now ( he’s long forgiven me) so worth checking - in many cases you can do it years later if you change your mind. 

    Neither I nor my partner have any issues about what it looks like (just lopsided) so all’s well. Many women feel much better after reconstruction, it’s normalising and if so, go for it. But the alternative is perfectly fine for me. Best wishes whatever you decide. 

    • Chestnut's avatar
      Chestnut
      Member
      22 days ago

      Thank you so much for your thoughtful reply. It means a lot to hear your personal experience, especially after so many years. I really appreciate that you shared both the practical side and how comfortable you feel with your decision. It’s encouraging to know that there isn’t just one "right" choice. Thank you again, and I wish you continued good health and happiness.