Upcoming masectomy

Kell Member Posts: 8
edited February 2021 in General discussion
Hi all,

Second time around for me unfortunately.  Diagnosed 2016, Triple Negative breast cancer aged 37. Gene tested, negative result. Full treatment and got to almost 4 years cancer free.

Fast forward to November 2020, routine check up to discover an anomaly. 2 weeks later to find out its back and I had a 1.7cm tumour, Triple Negative again in the same breast. 

Different course of action this time. 12 weeks of chemo and immunotherapy (Carboplatin every 3rd dose and Taxol weekly, with immunotherapy every 3 weeks). I have 4 weeks left til I finish.

I will then be having a double mastecomy with immediate reconstruction. I opted for double mastecomy with skin and nipple sparing then direct implants. 

Plastic surgeon last week said great choice but talked me out of nipple sparing. So I mentally prepared myself for that change of plan. I saw my general surgeon today who says I'm a good candidate for nipple sparing and he's confident with the choice.

Now I'm confused about which way to go? Tumour is almost gone with 8 doses of chemo. It should pretty much (hopefully) be totally gone over the next 4 rounds. It was 2cm from my nipple which my surgeon says was far enough away to not be a risk yet plastic surgeon said it was too close. 

Any advice right now would be great! Who's advice do I go with? I'm leaning toward my general surgeon who's been there the last 4 years and who's job was and is to get rid of the cancer. This was the first time I'd met the plastic surgeon and really, his job is to make me look like me again. 

Any advice or similar experiences are welcome. 


  • FLClover
    FLClover Member Posts: 1,506
    edited February 2021
    All I can say is I also had a nipple and skin sparing DMX. Left breast tumour was 4cm from nipple. MRI showed changes leading to nipple. Post surgery pathology showed changes were DCIS, so eventually left nipple had to go too. Now I only have right one. I’ve been given a set of fake nipples and they’re great. Very realistic. I don’t mind that I only have one. If I want I can have a nipple recon later and have it tattooed. Up to you though. It’s about who you trust more. Gut feeling 💖
  • Mazbeth
    Mazbeth Member Posts: 194
    Hi @Kell these decisions are always hard when there are choices involved - both presented by highly skilled professionals. This is a very personal choice. I can only let you know what I did and why. I chose to have a BMX because I had years of monitoring my dense and complex breast tissue - sitting in the waiting zone when everyone had left because I needed a biopsy/cyst drained etc; waiting for results the next day; the relief and then of course the day came when it wasn’t relief, it was the diagnosis and everything that followed. 
    I also think that the pathology can sometimes change things as @FLClover has said. 
    I asked about saving the nipple of my good breast and was told there would be little to no sensitivity - there are no guarantees on the final outcome. I also had really large breasts, so surgery was always going to be pretty complex. There was also an issue of symmetry for me. My PS was very supportive of my decision. 
    I had expanders under the muscle and have switched to implants and I am extremely thrilled with my results. I will be having the nipples tattooed on later in the year. 
    As I said, it is a personal decision. I talked it all through with a psychologist to make sure I was at one with my choice. One of my fabulous medical team explained that each of them - the surgeons, the plastic surgeons etc have their own agendas but ultimately it is your choice. My surgeon and PS both were really encouraging to me to have what I wanted as while treatment can be hard, it is for a short time and the reconstruction is for many years to come - so it is important to have what you want. My PS was really a part of my recovery - putting me back together, listening to me and doing his absolute best to achieve the best outcome. Give your PS a call if you need more information and ask lots of questions as it all helps. All the best with your decision. Mx
  • Kell
    Kell Member Posts: 8
    Thank you guys. I have about 6 to 8 weeks to decide so will do some more thinking, reading and have a chat to my medical team. Appreciate the info from you both. 

    My gut says to go with what my general surgeon says. I'll be having another ultra sound after my chemo to see what sort of response chemo had. 2cm from my nipple pre chemo is still a good margin so if its even more or better still,  gone after chemo it'll make my decision easier.

    Not somewhere any of us wanted to be but I'm sure in a few months I'll be looking at my new boobs knowing I've made the right decision.  🤞
  • Sister
    Sister Member Posts: 4,960
    edited February 2021
    Tough decision @kell and one I did not have to make (complete mastectomy) so probably can't add too much.  However, I find with any of these types of decisions, as well as research and questions, it's helpful to sit down with a pen & paper (yes, I'm that old) and make a list of pros and cons, including how and why you think one way or another.  It can really help clarify your thoughts.  Of course, on a purely flippant note, you could go heads and tails and see how you feel about the answer but I've never done that except to decide on which movie to see :smile:

  • Kell
    Kell Member Posts: 8
    @Sister, I write things down myself (I'm 42) but haven't written down the pros and cons with this decision.  I shall though.  I still have 3 weeks of chemo to complete then 6 - 8 weeks before surgery. My breast care nurse is fantastic (4 yrs ago the McGrath nurse I had was awful and caused a lot of anxiety to the point she no longer works there). My current breast nurse is absolutely beautiful and she has also offered to organise others who've had these surgeries to have a chat to me. I'm lucky my partner is so supportive and comes to all of my appointments so anything I forget, he remembers.  

    Thankyou for your words of wisdom. 🙏
  • Reggie3
    Reggie3 Member Posts: 20
    Hi Kell 

    I've just had a NSM (left breast) on 10 Feb and I'm very happy with the result, psychologically I think this is a better option if it is possible for your circumstances. You have surgery and wake up with a new boob that looks similar so the shock factor isn't as bad.

    I still have nipple sensitivity not the same as before surgery but improving slowly.

    If you can keep the nipple I would try but in the end it comes down to your choice and the risks involved. It's good that you have the time to research your options you need to be confident with your decision.

    All the best.
  • TonyaM
    TonyaM Member Posts: 2,801
    Hi Kell,
    I was like you- a recurrence 7yrs later in the same spot/breast.I originally had a lumpectomy and radiation and because of that,I couldn’t have an implant.A lady in my bc group had an implant put in her previously radiated breast and it kept breaking down so after 7 operations in a year,she had it taken out.I know things are improving all the time and I certainly don’t want to worry you but has your ps got any concerns about previous radiation ?
    (I’m assuming you had that)
  • Kell
    Kell Member Posts: 8
    Hi Tonya, 

    My plastic surgeon checked out my skin from radiation and is happy to go ahead with the implant. He did talk about the risk because of previous radiation but said all looks good. Still weighing up my options as my general surgeon is happy to go with NSM so I decided as that was my original choice, I'd go with that. I asked my breast care nurse to let them know but the plastic surgeon replied back saying no. So still a bit confused. Surgery is looking like it'll be around April 8th so I still have a few weeks to suss it out. Finished chemo just over a week ago and found that tougher than going through it 4 yrs ago so am glad for a break for a few weeks. I'd be lying if I said I wasn't absolutely crapping myself about the surgery but knowing I'll be waking up with new boobs is making this a lot easier. I adopted a saying when I was diagnosed 4 years ago. "Nana Korobi Ya Oki" which is Japanese for "Fall down seven times and stand up eight". I just keep saying that over and it gets me through. I really appreciate everyone's comments and info, has helped a lot. Xx
  • NeG
    NeG Member Posts: 8
    Hi Kel, I've just had a single NSM.  My cancer was six cm from the nipple.  My surgeon said she ideally needed it to be 2cm clear from the nipple to save the nipple, so it sounds like you have enough margin there.   Why don't you get a third opinion from another respected oncoplastic surgeon - it's a perfectly reasonable thing.  You need to feel like you are making the right decision for you.  This is a mental challenge as much as a physical one.  Good luck with your decision
  • Kell
    Kell Member Posts: 8
    Hi NeG, I hope everything went well for your surgery. My tumour was around 3cm from my nipple. I'm having an ultrasound in a couple of weeks so although my oncologist and myself can't feel the tumour,  won't know for sure until the scan if it's gone. I think I'm going to get a 3rd opinion as it's really messing with my head at the moment.  My surgeon at the last visit said I can let him know my decision on the day of the surgery but given my plastic surgeon is saying he won't do NSM for me, I really need to know exactly what is happening.  If my general surgeon hadn't of contradicted what the plastic surgeon said,  I'd have been ok with it. But NSM was my initial first choice and I'd really like to go ahead with it. I.think a 3rd opinion is needed and then that way,  I'll know for sure the decision I make will be the right one. Then, I can mentally prepare. The emotions have been up and down this week and I've held myself together pretty well up until the last week. I wish they'd offered a mastecomy 4 yrs ago when I had it the first time. But I will get there, physically and mentally. Thanks for your support and all the best with your recovery.