Single or double mastectomy?

Hi @JayMB. I had a BMX after a diagnosis of cancer in the right boob. I had a strong family history of BC so it was on the cards from the start. My breast surgeon actually initiated the discussion.

My mother had a mastectomy in 1986 and said she wished she'd been given the option to have the other one off. She's a worrier and loathed the anxiety she had to endure every year.

It was not an easy decision for me. Having chemo gave me time to think but it was months of agonising. Using the BRECONDA tool was useful.

It turned out I have a gene mutation so it was a very good thing I had lefty off. I have no regrets (sadness yes, but no regrets) and my relief at not having an annual mammogram knows no bounds.

There's no right or wrong, and the only surgeon I'd even DREAM of letting tell me I was silly would be one who's also had breast cancer. How rude and insensitive! No feelings are "silly" when it comes to cancer. There's no wrong or right. Undisturbed, flat or reconstructed, the only person who has to be comfortable with your decision is YOU. K xox

Hi @JayMB
sorry to hear your news - there's so much to take in and decide so quickly.  I was diagnosed in May last year - like you not everything was visible and after initial lumpectomy & auxiliary clearance, I had to return for a second wide excision a week later to try and get a margin.  That also failed so onto a mastectomy.  My surgeon supported my choice to remove both breasts as completely reasonable even though there was no changes to the right.  She was very clear that even though there was no scientific evidence for the removal of the second breast many women choose it and she could understand why and supportive of that.   After six moths of chemo I had bilateral mastectomy in December 2020.  I have no regrets and it is relieving that I won't have to have mammograms or breast surgeries etc going forward.  

Like you I was offered and intended to go with immediate DIEP flap reconstruction but after enquiring about complication/surgical return rates I decided against it.  I share this because I had post surgical complications from lumpectomies which were really tough to deal with and required further hospitalisation, medication and massive impact on my family as well as myself. I was the outlier in all of that so not at all likely in your situation but it left me feeling that did not want to have more surgery (s).   I found this website about aesthetic flat closure helpful in feeling at peace with my decision for double mastectomy with no recon.  https://notputtingonashirt.org  It's nearly six months from surgery now and I'm comfortable with my flat, no nipple chest.  
Best of luck with everything.  When I was trying to decide what to do my best friend said to me 'there's no wrong decision' and that was so helpful.  They are just decisions about what feels best to you at the time - you really can't get it wrong.  Warm wishes, Pru

@JayMB Im so sorry to hear of your whirlwind few months. Its an awful lot to take in. 

I had a single mastectomy diep flap recon in 2017 and its been great! the only thing I often think of now is Im too large, so that would be the only reason I wouldve chosen to have done a double. Otherwise my right breast is absolutely fine.

Ive been on this road since 2011, so happy to answer absolutely any question you may have :) I had it all done in the public system in Melbourne. I do have private health cover, however my Surgeon said he also worked in public together with the plastic surgeon and said it would save me alot of out of pocket. 

Don't hesitate to ask anything. Hugs M x

There is a lot of good information in everyone’s responses. It is a very individual decision, but it is such a good idea to get as much information as you can to help you. I used the ‘BRECONDA’ site to help get some clarity. My path was - ILC left breast, neoadjuvent chemo, BMX with expanders which were swapped out for implants in Dec, 2020. 

I talked it all through with a fabulous psychologist who helped me immensely. Pathology showed clear nodes, no LVI, but my right breast (the ‘good’ breast) showed some ‘abnormal cells’ - not cancer, but my doctor said that they would have needed monitoring. Turns out the BMX was a very good decision. My doctor supported my decision for the BMX from the start. My breasts were very large - DD and I no longer trusted them.

I want to add something which has taken me a while to make peace with. I had dense breasts and cysts so I was used to biopsies etc over many years (I am 54) and at my last check at a private breast clinic, the doctor referred my on to a breast specialist to chat about starting tamoxifen as a preventative measure and to start annual MRIs. I was shocked as it seemed like things had become a lot more serious. Little did I know what was looming. I spoke to my GP and he suggested a BMX as a preventative - something I thought about but had not articulated as I didn’t want to be ‘judged’ as overreacting and doing something extreme. As it turns out, if I did have a preventative BMX, I would have been diagnosed anyway. I try mot to get bogged down in the what could have been, but focus on what I can control moving forward.

My point is, do what you need to do for your ongoing health, both in the physical and mental sense. Take care x

Hi @MicheleR - yes, we are still us and when I look at my body I try to remember to say they are all just battle scars and are from something which tried to kill me but failed.  💖

I think thats a good point @June1952. 

Lots of people have reconstruction after surgery for mastectomy. My surgeon didnt do reconstruction either but could recommend someone else. He told me that he had a patient who 10 years after initial treatment decided to get reconstructed. 

The most important thing is to get the cancer dealt with. Everyone gets swept along quickly with mind reeling. How the hell are you supposed to know.

After my single mastectomy i peeked at the scar and it wasnt nearly as bad as i thought. Quite nice and tidy. Still a little confronting. In that momeny i decided to look kindly on my body which had been through so much - and yet to go through all the other chemo/rads stuff. 

Whatever you choose you are still you  there are still choices and opportunuties.

Thank you, @Pru for that link (above).
I had an emergency single mastectomy (non skin or nipple sparing) but as I am a 'worrier' I wish I'd been told of the possibility of a double as the annual checks make me anxious.
My surgeon does not do reconstruction and way after the event I was doing research and sort of decided to go back for DIEP and as that can only be done once I would have had both done.
Unfortunately life has got in the way so I remain lopsided.

Hi @AllyJay,

Noone needs to justify their decision. It is very personal. 

I guess my point might be it all happens so fast. You cant know the right thing. Only take advice. Mastectomy is a big operation, reconstruction is big. 

There are cosmetic concerns. 

Take your time. Look after yourself.

Michele x

Hi @JayMB,

Ive had a single mastectomy and large lobular cancer in that one. I had skin left if i wanted a reconstruction later. 

Im actually having a tidy up later in the year to go flat. 

Im only posting to give a different point of view. We all fear recurrence but it doesnt necessarily mean it will happen. 

I didnt know how i would feel. I have c cup breasts and i get around without a prosthetic. I dont think anyone gives me a second glance now. During chemo yes. 

Im not that keen on lots of surgery. It took a good while to recover from the mastectomy and i had to learn to wipe my bottom with the other arm. Noone tells you that stuff! Cant imagine how hard a double mastectomy is. 

Michele

@Keeping_positive1 I absolutely appreciate honest opinions, personal feelings and accounts. At first I thought I was being crazy for wanting to do it and I may still change my mind when given all of the facts. It has only been a few days since confirmation.