Forum Discussion

Motherly39's avatar
Motherly39
Member
1 month ago

Electing to have double mastectomy?

I apologise in advance for not necessarily knowing all the correct terms when I am asking this question! I was diagnosed three weeks ago with invasive lobular cancer in my right breast. I also had one lymph node that the biopsy showed as being inconclusive. I was told the tumour was very slow growing and was hormone receptor positive. All PET/CT/MRI scans etc showed everything else as clear.  I had a right sided mastectomy last week with a breast expander put in and 6 lymph nodes removed, two came from under the arm. The pathology post surgery said the tumour was removed with clear margins and also that the lymph nodes were all completely clear with no cancer in them either. I have been told that I don’t need chemo or radiation but will need to start the hormone blocking tablets soon as well. We are now looking at the reconstruction options and I do want to do a reconstruction. My surgeon and plastic surgeon have said I am an excellent candidate for a DIEP and it has been suggested I could do the left breast at the same time if I wanted to. I am quite keen to never go through this again and am thinking of doing the other breast. My husband has said it’s up to me and is supportive of whatever I choose.  

Has anyone else had the second breast removed despite there being no indication that it’s necessary? If I do have the double mastectomy do I still need to take the hormone blocking tablets?

thanks in advance (and I have requested to join the reconstruction group).

diep
double mastectomy

3 Replies

  • M0nP's avatar
    M0nP
    Member
    19 days ago

    HiMotherly39​ 

    I am so sorry to hear of your diagnosis, it’s such an overwhelming time. I have just come out of a double mastectomy with DIEP surgery and I’m currently day 14 post-op.

     I was diagnosed with TNBC in my right breast with 3 nodes involved on my right as well. My left side was and is completely clear. I chose to do a double mastectomy because TNBC is aggressive and at 43 years old I’m considered young in the cancer world. Plus I have 2 young daughters to look after. I balked at the idea of a single mastectomy let alone a double. I wanted a lumpectomy but it wasn’t an option for me. Eventually I decided on a double as I never want to go through this journey again if I can help it. So off I went and did 6 months of chemotherapy and have just now finished my surgery. I was lucky I was a perfect candidate for a DIEP. When my surgeon first opened up my gown post surgery my husband and I did an audible “woah” 😂 that’s because the breasts looked so natural you couldn’t tell my new boobs from my old (besides the obvious swelling).

    Happy to answer any other questions you may have! It’s a very personal decision but for me I just knew I want this thing out of me and never want it back ever and I was willing to go through a double of that’s what it took. 

     

    • Motherly39's avatar
      Motherly39
      Member
      17 days ago

      Thanks MonP,

      I too am sorry you have ended up on the Forum, who ever thought we would get here. BC always seemed like something that other people got! Being younger and with younger children must be terribly confronting but the amazing scientific advances being made almost daily in this area are wonderful. 

      Do you mind me asking if you had a tissue expander put in?  I had one put in just over 4 weeks ago when they did the mastectomy on the right side - it was put there as they were unsure if I would need radiation treatment - so said they wanted to buy time. I have to say that I am unsure if I would have pushed harder for an immediate reconstruction had I known how painful and uncomfortable the tissue expander is! If you did have one, did your incision site look quite ugly (for want of a better term)? And based on your comments, I am assuming the finished product is far more visually appealing :) Did you do the nipple reconstruction at the same time?

      Also wondering how you are going at 14 days - my reconstruction is now booked for the end of 2026 as my youngest daughter is about to do year 12 and I don’t want to add any extra stress to the year for her. This Christmas has been hard enough, to write off another one next year is kind of depressing! 

      Like you I never want to go through this again so am doing anything and everything I can to minimise my risk so am happy to go through the double - it’s more that I feel that I was in denial a bit before my surgery and am now wanting to be a bit more prepared.

      • M0nP's avatar
        M0nP
        Member
        17 days ago

        HiMotherly39​ no I never had a tissue expander put in. It’s good your surgeons thought about the possibility of needing radiation if I’m guessing your margins were not clear? 
         I was sure from the start I didn’t want implants and since DIEP was on the cards for me we didn’t discuss tissue expanders. I’m sorry it’s so painful for you, I’ve heard they are quite uncomfortable but have also heard that it gets more bearable with time and I certainly hope that’s the case for you 🙏

        At just a little over 14 days post-op now I’m really surprised at how far I’ve come. The first 10 days were definitely hard, especially learning to walk after surgery. The stomach is extremely tight so you kind of do a banana walk. But my physio at the hospital was amazing and she made sure I got a few laps in every day to help my body loosen up. I don’t have full functionality of my right arm due to node removal and that’s been more of a bugger for me. But again I’m positive physio and patience will help me through this. Every day I am able to get in and out of bed more easily and just today I was resolved to get in 5000 steps and I did it 😊 no way I could do that last week! 

        I was lucky to have a skin and nipple sparing DIEP so no tattoo required in the future etc. I even got to keep my belly button only it’s been repositioned a bit. Honestly my “foobs” look like my old ones. The scar across my lower abdomen is big but very neat and I think my surgeon did an amazing job. It will over the years lighten up. 

        I hope this next year brings you nothing but joy and good health. And may your daughters Year 12 go smoothly 😊

        If you have a year to prep for your surgery try and build up your core strength (chest and shoulder as well) if you can and your thigh strength as well as you will rely on your legs to get you up and off chairs and toilets the first 10-12 days while your core is healing. I worked out regularly before my cancer diagnosis and continued whenever I could manage during chemo, my core strength certainly helped with my speedy recovery.

        Happy to answer any more questions. The DIEP is a big surgery but so far I haven’t a single regret. 

        P.S- don’t look at another year as a write off, think of it as prepping for a marathon. You have a year to get physically, emotionally and mentally strong for your surgery. We cancer peeps are made of titanium… we are strong. Lock in….You got this 😉