So my story Dx age 31 invasive lobular grade 2, left side mastectomy, lymph node negative, ER PR positive. Local chest wall recurrence x 2, 7 months post mastectomy, Futher excision surgery followed by FEC-T chemo and radiotherapy.
I’m now thinking about reconstruction options.
I was not criteria for BRCA testing, so told to assume I’m probably not BRCA.
However I’m still considering prophylactic right side mastectomy… Obviously a big decision so just wanting any story’s, opinions etc to help my thought processes. Many thanks xx
Hi Amylou,
I’m sorry you havent received any responses to your post yet, hopefully this will help to bump you back up the list.
In the meantime you may find it helpful to post on theAsk Our Nursesarea of the Forum, or perhaps give our freeHelplinea call, 0808 800 6000.
Best wishes
Helena
Digital Assistant
Hi Amylou
Thank you for sharing. Some of our Breast Cancer Care volunteers have been in a similar position and opted to have a preventative mastecomy (without BRCA testing).
If you’d like us to put you in touch with one of them, just let us know through this link and we’ll get in touch with you to arrange it.
Emily (Someone Like Me, Breast Cancer Care)
Link:
Hi Amylou, I had my prophylactic right mastectomy last Thursday after 18 months living with one very large breast (FF cup). I decided to have the operation for symmetry rather than reducing risk as I was tested and was BRCA negative. I had WLE in February last year and left mastectomy in March and then had TC Chemo and Herceptin. I was pretty clear early on that I wasn’t going to have reconstruction and my only decision was if or when to have the 2nd mastectomy. I stayed overnight in hospital and I’m now in day 4 after the op and I feel pretty good. Not much pain and just more tired than usual. Hopefully my drain will come out today. I know that I’ll have to het used to having a flat chest but I feel like it will be liberating. I’m looking forward to getting some prostheses in whatever smaller size I choose and maybe a small shopping trip! I was helped a lot by joining a closed Facebook group called Flat Friends which is for women who choose not to have reconstruction. It’s so supportive and you can ask any questions that you need to. Good luck with your decision xx
1 Like
Thank you so much for your reply and sharing your story. Wishing you a speedy non complicated recovery.
I’m still tossing around all options in my head at the minute. Definitely won’t be rushing into anything. Xx