Elective mastectomy, no reconstruction - anyone regret the decision?

[Na123]

Best decision I made, had WLE for grade 2/3 invasive BC, but no clear margins full of high grade DCIS, therefore needed 2nd WLE - opted for mastectomy, as the DCIS and BC was not visible on mammo, didn't trust what was going on in the other breast
Made the surgeon do a sentinel node biopsy on the risk reducing side at the op as well, as did not want any more surprises
Happily node negative, the recon is getting there, but decision for bilat mx for certainly right one for me
N x

[FizzB]

I had an elective bilateral mx. Consultant had said prior that I would need an assessment from the clinical psycologist before they could authorise surgery however, the reality was that the surgery was scheduled so quickly that there was no time for the psycologist to fit me in. Therefore I ended up having the assessment post-op!!!! Quite bizarre ... fortunately I was, and still am, more than happy with my decision!!

[rosie14]

Jingo well,done on your decision and I hope all will.be well for you!
I elected,for db mx last July as I couldn't bear the thought of going all through the treatment again! I had tissue expanders inserted at the time of surgery which to be honest made my life a misery for the last 9 months! I had to,have the left one removed at the end of January due to repeated infections! Last week I,the other one taken out and silicone gel implants put in. Early days but I am hoping they will feel less tight.😁

[jingo_x]

Just wanted to return to this thread in case it's useful for others. I went ahead with a mastectomy on my other side. All my medical team were supportive and made it as easy as possible for me to decide. Had it done two weeks ago and instantly felt ok with my new look. So no regrets. Then to top it off my pathology report came back with another occult cancer in the tissue and an area of high grade DCIS.
I will never know if it was a new cancer or something that lurked there throughout my treatment, but I am now enormously pleased with my decision and my surgeon congratulated me on it.
Struggling a bit mentally as clearly it would have been better to be all clear, but hoping eventually I get peace of mind.

[southpool]

My right breast path was fine, but I had become obsessed with self exam & was convinced it was riddled with dodgy tissue!! I find being flat quite liberating, broadens my choice of clothes & less backache!! Sometimes I wear stick on prostheses, but mostly I go flat. bTW I am 51, so similar in age.

S x

[jingo_x]

Ah both my cancers occult too - was given the all clear in 2013 and 2014 and after pushing for a further look it turned out I had a 15cm lobular.  How the hell that stayed hidden I don't know, but I agree that is part of the issue for me because the breast I have left was clear on mammo and ultrasound, only spotted by accident on a breast mri for the other side.  Would rather get rid of it than keep looking at it and wondering.

Thank you ladies, I think my mind is made up -  onto the next decision...ovaries...

[southpool]

Hi

I had an occult breast cancer in 2012 & had a left mx, chemo & radiotherapy. I was always concerned that my right breast also had a tumour not picked up by imaging so asked for a right mx. It was the best thing I did, balanced me up & gave me some peace of mind. I am not planning a reconstruction and am happy being flat & fabulous. I am also on the Facebook page which is great. You can also ring the BCC someone like me service who can put you in touch with a volunteer who has had to make similar decisions to talk too. Also get a copy of this months Vita magazine as there is a great interview with a young woman who has the BRCA gene & has had a double mx. Good luck with your decision making.

S x

[JETS]

Anyone for archery?....lol

[jingo_x]

Thank you all so much - glad to hear that this seems to have been a positive decision for you - I felt very positive about my plan (I am also asking for an oophrectomy), but the counsellor seemed genuinely concerned that I might be faced with this 'regret' at some point so I thought the best way was to check with the BCC gurus that I now rely on so heavily!

Will check out the FB group too and think of all the new sports I can take up without my D cups getting in the way!

[Brewster]

Hi Jingo

I had bilateral mx in November. I had cancer in left boob but insisted they roof the right boob away too. I have triple negative caused through chest radiotherapy so there was a good chance it would develop on right side in later years and there was NO WAY I could live with that ticking time bomb. I also think that I preferred to be flat than lopsided

I am 5 weeks post op now and no regrets, dealing with it fine, getting movement back to normal.

Hope this helps xxx

[JETS]

Hi jingo - I'm 45 and having double mx next Monday ivd delayed reconstruction and am not sure if I will ever go through with it ... Not sure how I am going to be ( I'm single as husband of 20 years left at start of nov just before diagnosis) and every now andvthen I get a niggle " who will love me?..." But it's been a whirl wind psychologically and I am very confident that not having one as a reminder or to match up too will make things easier for me - I started expecting just one mx but was called back on xmas eve and have both now - to be quite honest I was slightly relieved as I decided I would be totally paranoid about my remaining Breast x I think it's the roll of the hosp to question to make sure you are confident and I do worry ( esp about post op recovery / sleep) but I totally understand why you are considering this decision and wish you every happiness xxx

[pedal999]

Hi jingo_x

I am one of many "Flat n Fabulous" women out here, who are very happy to be so.

I had cancer on one side (2 previous benign lumps on that side), but absolutely kew that I could not face another lump (i.e. no WLE), couldn't do reconstruction (felt like creating something false, which was not equivalent), and couldn't do prosthesis..   The thought of being lopsided was equally unthinkable for me, so I opted for bilateral mastectomy immediately, and was fortunate that my surgeon (though taking some persuading) listened and understood I just wanted to be flat, and did a great job,

There is a UK closed Facebook page  which "This group is for ladies who have had a single or double mastectomy and are living life flat, or with foobs" and which has 79 members, and also a similar international page  with 1400 members.

I get most of my cancer support from these amazing and uplifting groups.

Hope this helps

[jingo_x]

I was diagnosed with bilateral breast cancer in July/Aug 14 and ended up having a mastectomy with no reconstruction on one side (after a temporary implant had to be removed), and WLE on the other side.  I am nearing the end of chemo and waiting for a rads plan, but I am keen to have my other breast removed as well.  I am awaiting genetic BRCA tes results but these are going ot take 8 weeks and I am feeling sure that I want the other breast removed regardless.  I spoke to the counsellor at the hosptial today and she asked me to think about whether I might regret choosing an elective mastectomy in the future.  I wondered if there were any ladies out there who had made a similar decision and then found themsleves regretting the decision (or if it had been a positive decision for you it would also be good to hear).

I am nearly 50 and feel as though one boob is not much use.  Due to extensive scar tissue on my stomach I have limited options for reconstruction and would probably choose to stay flat rather than spend any more time on surgery.  I feel quite positive about the decision, but today's conversation with the counsellor has made me realise this is about to get real.