Hi,
I’m 42 and booked in for a single mastectomy on 7 August, with no recon. I have a multi focal area total 6 tumours measuring 5cm, Er and pr+ her2-
I’m concerned about it coming back in my other breast. I asked the consultant what was the chance and he said 10-20% which is more than 0%!
Can I request a double, or do they only do this if medically required?
Anyone else been in this position?
Hi,
I recently had a similar conversation with my consultant ( IDC, Er+,HER -).
I’d decided on a Mastectomy without reconstruction. When I told her that I wasn’t likely to ask for a reconstruction in future and would be more likely to ask if I could have the other one removed, she said that was fine.
She said she wouldn’t have done a double mastectomy right away ( bigger op, no medical need), but that all reconstruction options were purely cosmetic and that if I wanted the other breast removed in future for cosmetic reasons and symmetry she’d have no problem with that.
I think every surgeon is different though!
Now I’ve had my mastectomy I’m not sure whether I’d want to go through more surgery to remove the other in future, but I’m glad it’s an option. I’ve found that I’m really not bothered about being flat on one side after all.
After my diagnosis (2 lumps in right breast), I was told mastectomy would be required and was asked to decide whether I wanted to remain flat, have immediate reconstruction with diep flap or wait for delayed reconstruction if I was unsure. I asked to have left breast removed at the same time and would remain flat both sides. I was advised they would prefer not to remove healthy tissue and I would need to speak to psychology first to discuss my reasoning and this would hold up surgery. Obviously at that point I just wanted the tumours removed as quickly as possible and ended up going with immediate diep reconstruction.
Hi 
You can absolutely request it, don’t feel bad asking for it either if this is what you need.
Yes you will probably be told you need to have a psychological assessment to have healthy tissue removed. I had mine a couple of weeks ago and it was fine, if you’d like more info on this let me know and I can send you a message. It is a long appointment so I don’t want overwhelm anyone!
I had a single mastectomy and node clearance in March. I didn’t want reconstruction and would rather have had the other breast removed at the same time. My surgeon said he would rather I lived with it for a while as it is healthy tissue and I might change my mind on reconstruction. I haven’t! I am seeing him later this week and hope to discuss my options. I will update with what he says!
Morning. Hope you are all doing okay - which area/s are based please? Just curious as I’m absolutely distraught and in a terrible state regarding the suggested surgery for me & am on a waiting list for psychological support which I’m finding difficult. I know time is of the essence with the surgery and the appointment isn’t until August. I’ve been waiting since June. Any suggestions? I’m pretty desperate.
I had a single mastectomy in February with no reconstruction. I wanted a double mastectomy but was informed that the NHS will not remove a healthy breast. I did a genetics test which, if it had come back positive, would have enabled me to have it removed. My BCN said that if I still felt the same at the end of my treatment, she would be my advocate. Your GP practice has to request additional funding and you have to see a pyschologist. They won’t discuss it until at least 6 months post radiotherapy so Feb’26 at the earliest for me, but tbh I’m not sure I want to put myself through surgery again. In fact I don’t want to set foot inside another hospital!!
I was diagnosed for the second time in Feb this year. First time round was in July 2006 & I opted for lumpectomy at that time. March tbis year I had a mastectomy. I did ask consultant to remove the other breast as I honestly don’t think I could cope if it comes back again. I was told that they don’t remove a healthy breast, but did advise breast reduction, which I had. Have been in just as much discomfort (initially it was more painful than the mastectomy side) having the reduction. Hasn’t eased my fears of it coming back in the other side.
I have 4 lumps on my left breast and a mastectomy was done. I requested to have my other breast removed but similar to you, it was rejected. Due to the possible need of radiation, my plastic surgeon recommended to reconstruct the breast using tissue expander.
My family has a long history of breast cancer. My oncologist has requested a generic test and at the end, the result is I’ve BRCA2. After a long wait, I have mastectomy done on my right side with bilateral d flap done 4 weeks ago.
I could have only had a single mastectomy, but I told my surgeon to ‘just it all’
Then chemo, and 5 yrs of Letrozole; the side effects are a combo of chemo and menopause, NOT fun. That was 2 yrs ago. TG it didn’t go into my armpits. I am numb under my arms and the upper sides of my chest. I’m told it will never go away.
I wanted a double; I didn’t want to take any chances. Also, I have blood work every 3 months and it’s sent to an oncology lab. Fortunately, They haven’t found any more cancer DNA running loose in my body. And, after a double, you can get prothesis that
the same size.
Sending you hugs & love!
Hi _jm
I was diagnosed with a different cancer in each breast, each quite small - 21mm and 11mm. The more serious was lobular and merited mastectomy. The other was mucinous and didn’t excite much concern. As I had strong family history (but BRCA genes not involved), I requested a double mastectomy with no reconstruction as the most surgically radical way of trying to protect myself from future recurrence. (I also opted for full axillary clearance on the lobular side, rather than blindly zapping with radiotherapy; I wanted the nodes physically examined in a lab to determine the extent of node involvement / spread.) My surgeon readily accepted my decisions. That was 3 years ago. I have no regrets.
(I tried the AI Anastrozole but was never keen and abandoned that protection after 10 months.)
Nanalander: Please tell me where you are geographically and how you secured frequent blood work. It is something I had wanted and mentioned but it was never taken seriously. My request for MRI screening has been rejected 4 times too. Thank you.
Hi, In March I had mastectomy with reconstruction unfortunately after 4 operations I had to take the tissue expander out and I am not with one flat breast. I totally understand why you woyld want double mastectomy however my advise would be to wait until after you’ve had your mastectomy as it’s an emotional roller coaster. Hope this helps. 
So I saw my surgeon today for a 4 month post surgery check up. I asked about the possibility of having the other breast removed. He said as a risk reduction it wasn’t really a consideration. He said chances of developing another cancer in the remaining breast are around 15% for someone who has already had breast cancer compared to an 8% risk for someone who hasn’t. To be honest those figures are still enough for me to want it gone! He did say that if it was for reasons of balance ie I was certain I didn’t want reconstruction and would rather be flat both sides then it would be a possibility in the future but advised not for 3 years. I am on Kadcyla at the moment and will be on hormone blockers and he would want me to have finished those treatments and be back to full fitness first. I am in the private system so may be different with the NHS.
Sorry for the late reply all, have been away for a few days. Thank you everyone for your replies
I’m based in Worcestershire in the Uk and having treatment on the NHS, so I guess from others experience it’s highly likely they won’t remove healthy breast tissue and I’m not willing to delay surgery any longer. I’m a cup size C/D, so will feel lopsided and will need some sort of prosthetic for symmetry, although this is just cosmetic concerns, I’m really just concerned about it occurring I. The other breast, it might be healthy now but for how long? I’m also concerned, as the mammogram and the ultrasound didn’t pick up the other tumours, only the mri with contrast. So I’m not sure even the future scans will reduce my anxiety.
Maybe I need to park it for now and just get this surgery done and see what I’m facing next.
I’ve had a lot of gynae issues too, and only have one ovary remaining and even considering having that removed to and have contacted my gynae consultant. I guess I can never eliminate all risk of these types of cancers and driving myself crazy, but my anxiety is very high right now.
My surgeon did say that choosing to have a mastectomy didn’t mean I couldn’t get cancer, as it can still come on the chest wall. If you definitely want to remove your other breast, speak to your BCN because they may be able to help and push it along. I can’t see why you should have to wait 3 years.
I’m on NHS btw and didn’t get a 4 month post surgery check up.
Im in Worcestershire also and have been treated at Worcester Royal, Kidderminster General and Redditch Hospital trust. Lobular, 6cm, ER+, no node involvement. Radiotherapy and anastrozole. Like you I wanted a double mastectomy for symetry especially, with the added benefit of potentially reducing risk. I stayed flat after SMX as my boobs were a C and was concerned about impact of radiotherapy after implant.
The double mastectomy was put on hold whilst i recovered from the SMX. It felt slightly frustrating but also understandable. I focused on the SMX and how it would be removing the tumour from my body. That is what really mattered to me.
6 months later I am really glad it is in two stages; If there were complications i would have only one side to deal with. I feel i have healed more, emotionally and physically and am now ready for the next stage.
I have had my psychological assessment, been supported by the wonderful macmillan counselling service and have met with my surgeon to agree to go fully flat. She is a marvellous lady as is the rest of the team at The Haven. I’m now on the waiting list as a simple SMX to slot in on the surgical rota at some point, hopefully before christmas.
What i am trying to say is that a two stage approach does make sense. Fight the cancer then do the rest later.
Happy to chat seperately from here also if would like given we’re Worcestershire neighbours 
Hi I’m in Exeter. Diagnosed with grade2 invasive lobular cancer, HER2+, ER+, & sentinel + 1 node impacted. V large tumour. Neoadjuvant chemo for 6 cycles + phesgo to reduce tumour. Surgery was single mastectomy with ancillary node clearance. I was offered same day reconstruction. Declined. Wanted to go flat. Requested double mastectomy. Refused on grounds NHS does not remove healthy tissue.
Successful op, full recovery, very happy. I’m asymmetric- hate prosthetics.
Diagnosed Jan 23; op July23; chemo (14 cycles) Oct 23-July 24; 15 sessions of radiotherapy over Xmas & NY ‘23. Despite all this second mastectomy still refused.
Had 2nd anniversary check - all clear. Still no. I have poss 1-2 of fluctuating lymphoedema at very top of left arm, which exercise & node massage gets rid off. My body is finally returning to “me”.
I know absolutely I want to be fully flat. People spot “lopsided” look & often look embarrassed. Only once was I stopped. A group of 4 late teens/early 20s on way to concert in local park. One of the girls waved & shouted from across the road - “You are beautiful”, followed by her charging across asking if she could hug me, surprised but yes, asked my age (70). To which she replied “I hope that when I’m your age I look as amazing as you”. Then returned to her friends. I’d drawn attention, but received nothing but smiles & claps as steady stream passed me.
I sense double mastectomy will be less obvious. It will most definitely be more comfortable & way less expensive as I’ll be able to wear bralettes, crop tops etc (as underwear). Plus my right breast will stop catching on my right arm!
So I’ve started my campaign towards double - fingers crossed. I do neurotic quite well 
Anna xx
I had single mastectomy last month, also devastated. I haven’t been completely naked since, won’t get into a bath or shower. I’ve recently started psychological therapy. The option for reconstruction was off the table because of other issue. My surgeon has deliberately left the surgical sight loose to promote better healing and will tidy this up in due course. It’s early days but I am considering asking for the remaining breast to be removed and when I see the surgeon next week will tell her so.
It’s my experience that mastectomy and its effects are extremely complex and though the breast care team are wonderful, perhaps more should be discussed about the emotional and psychological impact this can have.
Much love and all the best to you all. xx
Hey @itsme2,
I can imagine - well done for getting through the surgery. How are you feeling now? I don’t feel able to do it.
When I was originally diagnosed with ibc, i wasn’t able to bath or shower either as it was so huge so can relate. I’m very self aware and know that the surgery would ruin me further mentally.
Reconstruction would also be pending for me & i lack the trust that it’s even possible.
Totally agree - I’ve been asking for months for support and am on a waiting list.
Are you being looked after? X
Hi! Nice to meet a neighbour! My surgery is next week at the Alex, feeling anxious but also want this surgery asap.
What you’ve said about a two stage approach makes a lot of sense. Get this part over with and see where I’m at then x
It’s good to hear that your surgeon hasn’t ruled it out, I have a different surgeon to you, but maybe it’s a trust approach rather than individual surgeon, if not, I know who I can go too!
How are you doing now?