Hi,
I’m after advice of anyone who has had double mastectomy with no reconstruction. I was diagnosed with grade 3 invasive ductal cancer, oestrogen positive and her2 positive in December, I am having chemo first and started in January, I have chemo 4 this Friday. My surgery is pencilled in for 19th May but I haven’t met with surgeon yet to discuss what surgery they recommend. I have decided though that I would like a double mastectomy with no reconstruction. There are several reasons for my decision, I don’t want to be lopsided, I want minimal surgery and reconstruction involves a lot more surgery, i worry cancer might come back or I might miss it on my healthy breast, being flat does not bother me. I have 3 small children and I feel that this option is my best but not sure my surgeon will agree.
I would love to hear others experiences with this request. I’m going to speak to my BCN this week as I don’t want my surgery getting delayed.
Debbie x
Hi Debbie,
I am sure users will be along soon to share their experiences on having a double mastectomy and show their support.
If you would like to talk, you can call our helplineat 0808 800 6000 who will be able to talk to you about your options and offer a friendly ear. The helpline opening times are below.
Monday-Friday, 9am-5pm
Late opening Monday and Wednesday 5pm-7pm,
Saturday, 9am-1pm
Best wishes,
Lizzy
I had a double mastectomy a week ago and have not had reconstruction due to other health issues. I decided to have my good breast taken off too because I couldn’t cope with worrying about getting cancer again. I had cancer 5 years ago and had a lumpectomy so I have been using a prosthesis since . This just looked normal under my clothes so I am not worried about wearing two . My little boy who is now 9 named it Bobby the boob and unknown to me he drew a face using the nipple as its nose in red permanent marker which made us all laugh and broke the tension. I wish we all could learn from children and their acceptance of things. I am very sore but know I made the right decision for me !
Hi Sunset50,
Thank you for your reply, so sorry to hear you have had to go through all this c*** again. What did your surgeon and BCN say when you said you wanted a double mastectomy? From what I gather they automatically expect you to want reconstruction and double mastectomy just isn’t an option!
Have you had to have chemo too? I hope you are feeling less sore soon, are you coping ok looking after your little boy? I would like to have both removed at the same time so I don’t have to have more surgery but I have 4 year old twins and a 6 year old so hope it wouldn’t be too much, but then it would save going through it twice.
Take care and get lots of rest.
Debbie x
I require a right side mastectomy and lymph node clearance and have always said that I would like a double mastectomy. My surgeon was initially reluctant to remove a healthy breast and said that I would have to wait for at least one year to discuss it. On the advice of my oncologist (I had chemo first) I wrote her a letter in which I set out my reasons clearly and demonstrated that I had researched the topic, had met with people who’d had single and double mastectomies with and without reconstruction, had read forums like this one. After that we met and she has agreed in principle to do the double. However, post chemo I am not well enough for the double so she is doing the single mastectomy and axillary clear out on Monday 21st March (wish me luck) and has suggested that I have the second mastectomy 3 months after the end of radiotherapy. She says that a lot of women ask for a double and she feels that they have not considered all of the risks. By doing some research and writing the letter I demonstrated that I had considered all factors. Although I am not happy about having to wait until later in the year it is a no-brainer if I’m not strong enough for the whole surgery. Also I feel that this is an acceptable compromise. My letter is on their file now and I can refer back to it whenever I want. I hope that this helps.
Hi Eddiegoodwin,
Thank you for your reply. It sounds like you have had a good outcome/compromise. I’ve have written to my BCN to let her know my thoughts about surgery, then hopefully my appointment with surgeon can be brought forward.
Good luck for your operation tomorrow, I’m sending you positive vides and big hugs. It’s your next step to recovery and you will tackle it. I look forward to hearing how you get on.
Take care
Debbie X
I am due to have a double mastectomy with no reconstruction on 19th April. I was diagnosed with invasive ductal cancer grade 3 last Aug (2015) had a lumpectomy in Septomber followed by 6 cycles of T-FEC chemotherapy. Three weeks after my lumpectomy I developed oedema of the breast which still remains and because of its similarities in symptoms had biopsies in January 2016 for inflammatory cancer which were negative. My oncologist decided that with the oedema it wasn’t appropriate for me to proceed with radiotherapy and following discussions with multi disciplinary team and my self with breast surgeon it was agreed for a double mastectomy owing to my triple negative status and the prophylactic benefit to the current healthy breast as well as the cosmetic/health benefits in balancing and symmetry as a large breasted lady.
4 weeks to go ? would love to hear from anyone whose gone through this who was on the ‘larger’ side with any advice and info in terms of recovery and return to work timescales
Hi, you might have met with your surgeon and made your final decision but thought I’d post. You might want to have a look at Flat Friends which is a site set up by a lady who couldn’t find any support for people who had chosen not to have reconstruction. (I had recon, something I regret to a point as I’ve had lots of problems but not something I can do much about now, so just get on with it. ) A lovely friend I met through BCC forum has had a double mastectomy (one elective surgery) and she is really pleased with her choice. She has modelled at the BCC fashion show and sometimes chooses to be flat, sometimes wears her prothseses ( not sure if that’s spelt right!) If you have a look at the Flat Friends site you’ll see an article from Sally Anne on their home page, it’s worth a read, she’s a very inspirational lady. Do stick to your guns if that’s what you want. Good luck with what ever you decide.
Gaynor
I had mastectomy and immediate reconstruction but eight years later had capsular problems and was fitted with permanent recon three months ago. this is causing me great problems as it is so heavy and has destroyed my posture and given me constant backache and depression - feeling I can’t go on like this. went for check up appt and said I wanted to have mastectomy as I can’t cope. Said I wanted other breast removed and he said - not that simple - they would have to plead a special case to the board to remove a healthy breast. I have to wait three months for another appointment for “thinking” time- I just know I want double mastectomy to get my life back - would welcome any advice-please!
Hi- this is why I have joined the form -I would like my other breast removed so that I can be symmetrical but do not wish to have reconstruction…
I would love to hear from anyone who has an understanding surgeon to perform the second mastectomy as my sugeon, and the one I was sent to in Leicester both said NO but were happy to do the much more invasive resconstructin surgery.
…Good luck with your requests - I’d love to hear how you get on,
I asked for this after poor results with implant and my surgeon said no.