Since being diagnosed with Stage 3 Inflammatory Breast Cancer in March I have been pretty clear that I want “a double mastectomy, no reconstruction and fab tattoos”. My breast surgeon is actually the guy who first broke the news to me when I ended up in hospital thinking I had an infection and I have seen him twice since. He has always said that having a double didn’t make recurrence less likely (I have a tumor in my right breast and there were some cancer cells in my lymph nodes) but that we will take about it nearer the time. Well, I see him next Friday prior to finishing Chemo in 2 July and my oncology says surgery will be around three weeks after that so now it is time.I know I am the only one who can decide but would love to hear from others who had to make the same decision. Lumpectomy is absolutely not an option, it’s one or both off. I am also wondering if choosing a double will have cost implications, I have found out about gap fees in the private system the hard way so if he says it’s not medically necessary is that the choice taken away from me as I certainly can’t fund it? I would be very grateful to hear what others did.

Hi Belgrave14, I had a single mastectomy in 2010 so I’ve been lopsided since.To tell the truth,I’m sick of it.I’m compelled to wear a prosthesis which restricts clothing choices in summer eg.can’t wear halter necks,strapless or thin strap singlet tops or low necklines of any description. But I’m stuck with being unable to decide between taking the remaining one off,reconstruct one side or both. Because of previous radiation,I can’t have implants and could only have Diep where they construct boobs from your belly fat- HUGE surgery.My surgeon says I’m getting to an age where I only have a few more years to decide on such big surgery(I’m 64 next month).She also said that each year brings a slight increase to bc occurring in the remaining breast- I’m not sure if she meant the general aging population or just us poor bc buggers.My bc wasn’t aggressive just hormone +ve. I think every bc decision is awful and also very personal.Intimacywise,I have one breast with feeling which is something to consider but then I don’t do naked in bed because of my embarrassment of lopsidedness.YES,even infront of my husband of 40yrs! Would I also be like that with no breasts? Don’t know.So there you go- my personal take on the lopsided life. Ultimately,go with your gut and know that any bc decision is an awful one!

Hi @Belgrave14, I had a single mastectomy in 2016 & wanted a double but surgeon said it wasn’t necessary. I regretted that decision so in Feb this year had the other breast removed & double reconstruction and am very happy. I was always worried I would get cancer in the remaining breast & mammogram time was awful. I also have very dense breasts so that was a concern too. I hated being lopsided as well. Doctors always go on statistics but I think you need to go with your gut feeling. I went private & the mastectomy part was mostly covered by Medicare & private insurance but you would need to check with your health fund. Good luck with your surgery & any decision you make.

I chose both breast to be removed and had reconstruction. It was my choice but suggested by my surgeon. I had dense breast tissue and had a clear mammogrsm only 5 weeks before i found a lump. My sister and niece had breadt cancer. My Aunts on my father side had either fied of ovarian o breast cancer...the last one died following breat, ovarian then another breast cancer. In my mind was always the thought if she'd had both she might still be alive. Whilst I have no gene like my Aunts, they believe my sister myself and niece probably have a yet undetected gene. So yes...removing the other breast does not reduce the risk of metastases, just the risk of a new primary breast cancer forming in the other breast.. I've miss my breasts but have never regretted the decision.

My left had gone feral on me and the right had "abnormal geography" according to the ultrasound and other scans. I insisted that I wanted both off and was initially given all the "Not necessary, that's overkill, we'll monitor you very carefully "routine. I then told my surgeon that I felt that my right breast was a threat to my mental and emotional health, as well as potentially my future physical health. I asked her how she would feel if she knew that a convicted rapist lived next door to her...and that he had a duplicate key to her front door. No amount of reassurance such as "He has to report to his parole officer twice a week. He's completed a course in how to deal with his perverted behaviour, he's wearing an ankle monitor, so we know where he is at all times" and so on would ease her concern. After that, she said she understood completely my fear, real or imagined, and would remove both. Good move, as it turned out...the right side "abnormal geography" was an area of precancerous cells which apparently have a strong history of going bad. I wear my "fake titties" when going out (sometimes), but otherwise go F & F. My one big regret is that I no longer have a handy place to keep mt crochet hook or pen for marking off knitting patterns.

I opted to have a double mastectomy. My surgeon recommended single mastectomy but I insisted on having a double. They weren’t happy about doing it but I had to follow my gut and double mastectomy was the only option that made sense to me. Best decision I could have made for me. I have 2 small boys and I only plan on doing this once so threw everything at it. Chemo, radiation, herceptin etc... I’m not planning on going down the recon route at this stage. Couldn’t face another surgery at the moment and not sure why I would do it. My husband doesn’t care so not sure who I would be doing it for? I just want a healthy body and padded bras work a treat for me as was only an A cup before cancer! Good luck with your decision and just follow your gut! Xxx

Single or double mastectomy | BCNA Online Network

36 Replies

Sister
Member
7 years ago
Good to hear @Belgrave14
kmakm
Member
7 years ago
Excellent! :)
Belgrave14
Member
7 years ago
Just an update, had my double mastectomy on Thursday. All went well so fingers crossed for the pathology results. My surgeon said he will have the preliminary results on Tuesday so he will call me, he seemed very happy with how things have gone and my recovery. I have a bit of discomfort from the drains but no real pain so will be going home from hospital on Monday. I feel so much better now surgery is over 😊
margabra
Member
7 years ago
I appreciate all your comments and they have been helpful to me. I see the Surgeon on Thursday and will be told my outcomes but I suspect its a Mastectomy. I too would prefer bilateral removal but I guess its wait and see! I have Grade 3 with hormonal receptor and stage 2a or that's what the Clinic nurse told me when she rang to make the app. Waiting to see Surgeon to confirm. Thanks again, you all sound very brave. x
JennyD78
Member
7 years ago
I've been in contact with an artist who works in a private studio here in Newcastle. She tattoo'ed her mum after her mastectomy so she's had a bit of experience :)
Belgrave14
Member
7 years ago
Thanks for all the responses. Have you found somewhere for your tattoos @JennD78? That is my long term plan too so I would love to hear how you go.
JennyD78
Member
7 years ago
Congrats on your decision @Belgrave14 (and I'm glad the surgeon didn't hassle you). I too had both removed even though the cancer was only in one, and decided on no reconstruction. I'll also be getting fully tatted up at the end of the year B) . The drainage tubes weren't that bad for me, you'll just be sleeping on your back for a fair while. All the best for your surgery xo
Anonymous
Not applicable
7 years ago
I had a mastectomy on the left. I was never offered a double. I had to wait 2 years before reconstruction. It was a long wait, but reconstruction has been the best decision I have made. I hate mammograms, but i love having some sensation in the right breast and the appearance of being myself again. It’s been about 4 years so far and i’m happy with the results. I can totally understand why some women have them both removed. The issue for me at the time was increased pain and looking back drainage tubes on both sides must be a nightmare.
Shellshocked201
Member
7 years ago
That’s great news, I always say go with your gut feeling.
Surgeons need to remember this is our body, we are not asking them to remove their tits......
I probably feel like most people that have or had BC , it’s almost as if your boobs become poison to you and you just want them gone to help, prevent this hideous disease coming back.
Choice to have reconstruction or leave flat is a personal decision and only you can make that choice.

Wishing you all the best for your surgery I’m sure it will run smoothly.
Keep is updated.
Sending hugs your way xoxo
BlackWidow
Member
7 years ago
Well done, @Belgrave14. The uncertainty is the worst but now you have made your decision you will breeze on through it. Al the best for the 1st August.