Struggling to make surgery/reconstruction decision

Question

Hi everyone I have been diagnosed with high grade DCIS with an MRI showing a potential small spot of invasive cancer in my right breast.

I have to have a mastectomy and I am booked in for surgery next Monday (8/9) but I am struggling to decide whether to have a bilateral mastectomy and what type of reconstruction to have. I have phone consultations with the plastic surgeon and the breast surgeon tomorrow and have to make the decision during these consultations.
I am conflicted with what to do as I am waiting on the results of genetic testing (I had a tumour that was borderline cancer removed in December last year, which included removing an ovary and a fallopian tube) so am extremely fearful of having to go through this again.

My initial reaction has been to get rid of both to be on the safe side which my surgeon was supporting but during a phone call with her yesterday she thinks my best option is to do only the affected breast and leave the other one. The reason she is recommending this is the left nipple can not be spared due to this breast being more saggy and the blood flow (don’t really understand it completely so that may not make too much sense) so at then end of the day if I choose to have the bilateral mastectomy I will have no nipples which she is worried I will regret.

if I only do the one breast I may have enough fat on my stomach to do the flap surgery and they should be able to spare the nipple. I do not have enough fat on my stomach to do two breasts so would need to also take fat from my thighs. I have decided against this due to the scars that would be left in my thighs so if I have the bilateral mastectomy I would opt for implants.

I would appreciate any input from anyone who has had a similar experience as I am at a loss what to do and only have tomorrow to decide. Specifically, if anyone has had to choose between a single or double mastectomy and has experience with nipple-sparing versus non-nipple-sparing procedures, or if anyone has had regrets about their choice, I would really value hearing your perspective. Any advice or experience would be a huge help right now.
Thanks.

suki · Answer

HiJamie350​&nbsp;
Sorry to hear of your diagnosis.
I was diagnosed with invasive IDC in my left breast after a previous diagnosis of LCIS (with calcifications in both breasts). &nbsp;My tumour was located close to my left nipple.
I went through the private system with an oncoplastic surgeon and chose bilateral skin-sparing mastectomy, direct to implants. Surgery was all in one go.
I would have preferred DIEP flap, but didn’t have enough flesh. &nbsp;My original breasts were small and are now slightly larger (with the minimum implant size😂). &nbsp;I don’t have to wear a bra unless exercising.
My surgeon recommended losing the left nipple (due to the tumour proximity) and I requested removal of the right also for peace of mind and symmetry. &nbsp;It was quite shocking at first, but now I don’t really notice not having nipples anymore (1 year, 3 months post surgery). &nbsp;You can get very realistic 3D nipple tattoos (I haven’t yet, as I think it will hurt and I’m a bit of a wimp!).
I am happy with my implants and have quite a lot of sensation. I will probably consider going flat when they need changing out in approx 10 years (I was 47 years old at diagnosis) - see how I feel at that point.
Shout out if you have any queries.

flatnina · Answer

Hi, I’m so sorry you are going through this awful process and I’m sending you hugs! &nbsp;I had a single side mastectomy 4 months ago. &nbsp;I’m very happy being flat, and frankly until I just read your note, I hadn’t even thought about being without a nipple. I’m surprised your surgeon is suggesting to you what might worry you. &nbsp;Surgeons do sometimes project on to their patients their own personal fears and unconscious biases. These suggestions can come dressed up as medical advice. You are on the right path, seeking advice from this community. I hope you join the flat chat group, because many of us are happy to share photos of our results and you could have a chance to see actual outcomes and decide what suits you most. I am holding you in my heart and hoping you land in the right place for you!&nbsp;

arpie · Answer

Hi Jamie350​&nbsp;
So sorry to see you here, joining our 'select little group' ....&nbsp;
You don't have much time to make your decision ... I'd suggest you call our Helpline tomorrow to have a confidential chat.
I'd also suggest you join both Reconstruction and Flat Chat private groups tonight , so you can be 'approved' tomorrow - so you can hopefully read through previous posts - and put up questions, tho chances are, you may not receive answers before you chat with the surgeon tomorrow.&nbsp; :(&nbsp;&nbsp;
More women are requesting bilateral mastectomies these days, as a preventative method, and are getting them - some with reconstruction, some choosing to go without. (Read Charlotte Tottman's story here - she is an eminent BC Psychologist who was diagnosed some years ago &amp; opted for no reconstruction.)

Ask your surgeon about having an 'aesthetic closure' ... where the scar is not too ugly.&nbsp; Sadly, sometimes, the scars can be quite confronting.&nbsp; :(&nbsp; My own surgeon takes great pride in having 'pleasing results' - as you'll be looking at it, every time you have a shower. xx. You are within your rights to get a 2nd opinion too.
Wishing you all the best for your decision making.

jamie350 · Answer

Thank youFlatNina​ hugs right back at you x I have decided to do the bilateral mastectomy with implants and &nbsp;I can always get nipples later if I choose to do so or decide to go flat down the track instead of getting them replaced.