I have recently been diagnosed with DCIS in one breast, nothing in the other. NHS treatment option is unilateral mastectomy with implant, my preference is a bilateral mastectomy with implants. I don’t meet criteria for genetic testing although there is plenty of breast cancer in my family history, it is not genetic. I would not stand to go through this process again should DCIS develop in my other breast and also psychologically I can’t bear the thought of my breast looking and feeling differently forever more. My mother had the same and is now quite mismatched! I wondered if anyone had successfully found a surgeon who would perform this surgery either NHS or private? I’m very anxious and stressed about the whole thing and feel we should be able to self advocate to some extent. Thank you
First of all hello. Sorry that you find yourself here.
When you say treatment option is unilateral mastectomy does that mean you have the choice of a lumpectomy or mastectomy? Are they also suggesting radiotherapy or other treatments?
I can see why you might want the reassurance of a bilateral mastectomy but if they do that they’re unlikely to do radiotherapy on the unaffected side so there’s a possibility of a mismatch afterwards anyway.
I had a small invasive ductile carcinoma within DCIS and that’s been removed by lumpectomy. No other option was given. It has healed well and a lot quicker than a double mastectomy would. I’ve then had 5 days radiotherapy.
I would talk it through with you team and really dig into the details of each of the options.
Good luck whatever you choose.
Hello @rachelw1
I was in exactly your situation 6 years ago: 6cm area of high grade DCIS in one breast and a terrible family history. My (NHS) consultant thought I was a bit mad wanting the second, prophylactic, mastectomy but she basically agreed that whatever was best for me would be appropriate.
I did have the option initially of lumpectomy plus radiotherapy or single mastectomy. I opted for mastectomy, partly because I didn’t want radiotherapy and partly because my boobs were so small there wouldn’t have been much left! I’d also have had to lose the nipple. As it turned out it was just as well because the area of tumour turned out to be a lot bigger than the mammogram had suggested. I had to have an assessment with the clinical psychologist from the team before they formally agreed to carry out the second mastectomy but other than that there were no problems with getting it done and I’m so glad that I did.
I’m going down this route too but it has been a challenge pushing for the second mastectomy. Have gone for a private genetics test too.
Thank you, it is good to hear. I have an appointment with my surgeon and nurse tomorrow, I have talked to cancer charities about my anxiety and mindset, and my nurse multiple times, the MDT are very resistant to my preferred choice. I have contacted numerous private surgeons with no joy. I have asked for referral to a clinical psychologist, the wait list is huge! Would you mind sharing which trust and area you are in please? Many thanks
Thank you, please keep me posted, I’m pretty sure mine is not genetic as my mum had genetic testing with her cancer treatment. I’m still pushing on to advocate for myself..
Poor choice of words from me, not treatment option, treatment recommendation to remove all the DCIS. Thanks for replying
I would definitely consider finding out your genetics privately. If they find yours is genetic the NHS will offer you the risk reducing mastectomy on the non cancer side in a second. I just think if you are prepared to pay privately for the mastectomy why not try the genetics first.
If it isnt genetic and they wont offer you the bilateral mastectomy then atleast you know in your mind that its not a gene thing and your risk of reoccurrance in the other breast is very low.
I’m so sorry you are having to deal with all this. I know first hand how this will be playing on your mind constantly. Keep advocating for yourself, make as much noise as you need to if you feel its your only choice. We are all different and the treatments need to reflect that. Big hugs
I was treated at UCLH in London. Also, the psychologist I saw wasn’t something I’d asked for but something the team routinely insisted on before they would agree to remove a healthy breast - it was just a one-off consultation. You said you’ve explored private clinical psychology so that sounds as though you may be looking for more ongoing psychological support? You’re right, the waiting lists are ridiculous but you may be able to access counselling via MacMillan, or a Maggie’s centre? I wish you well.
The reasons given to me for not going through with a bilateral is that firstly there are legal implications if it is a healthy breast, bilateral surgery doubles the complications and I had to read between the lines… because my BMI is high at 35, the complications increase alot. I was told in May that I should have had a date in July but now it’s August and there is no availability for bilateral surgery. So I am awaiting a psychology appointment which takes up to four months, and the plan is once I have the first total mastectomy and going flat, I hopefully can get the second done within six months after the first but it depends on whether I need Chemotherapy afterward. The psychology route is the only route beside genetic predisposition that a bilateral mastectomy will be done. I was told that psychology referrals privately and via the NHS have the same waiting times.
Hi Rachel
It’s such an overwhelming time… I remember the turmoil I felt 3 years ago. I was diagnosed with 4cm high grade DCIS in my left breast. I was given two treatment options - lumpectomy with 5 days of radiotherapy or mastectomy and reconstruction with implant, I was also told that my NHS surgeon would perform symmetry surgery on the healthy side to ensure I wasn’t lopsided … I opted for a mastectomy and had a small uplift on the other side. I was very happy with the result both in and out of a bra. I wonder if this is something you could enquire about?
In terms of concerns of DCIS appearing in the healthy breast - I was told by a few health professionals that the chances were exactly the same as anybody else developing breast cancer at any stage of their lives. In other words just because you had it in one breast, doesn’t mean it’s likely to reoccur on the other side. For me, I felt more reassured having a mastectomy rather than lumpectomy and I’ve not looked back. I have my annual mammograms on the healthy breast and it helps reassure me.
I hope sharing this may help you a little. 
Hi, I’m in a very similar position and am now 10 days post op. I had DCIS in one breast, the lumpectomy couldnt get margins and so they needed to do a mastectomy. At that point I asked for both, surgeon asked me to make my case for it, which I did (possible BRCA2, dense tissue, quite young, breast stroke swimmer and didn’t want to feel lopsided when I swim) and she and head of surgery agreed without any need for psych evaluation.
No regrets, I do have rippling and I dont like that, and I can’t quite look at them yet, but I feel safer with both done, and I wouldnt feel any prettier if just one breast was acting like this! And I feel like I’m doing this for older me, to minimise the chance that she’ll have to go through any of this.
I hope once I’m (eventually) back swimming and I feel the symmetry as I swim I will know this was for the best.