Immediate or delayed reconstruction

Hi

I have just been diagnosed with invasive ductal cancer, which as spread outside of the ducts, but looks to be contained in the bust. No cancer is showing in the lymph nodes and CT scan looks clear. However, I initially saw a specialist in September 2022 who said the lump was prominent tissue and nothing to worry about. I went back to my GP in October 2023 and she referred me again. The 1st biopsy was clear, but the 2nd biopsy (taken a week later) and subsequent MRI scan showed a BIG 6 x 4 x 2 cm malignant tumor, which is tethered to the skin. So an implant is not a viable option for reconstruction as this is most of my 38C bust!.

I have started letrozole hormone therapy as the cancer is estrogen receptive and have been referred for a mastectomy with immediate diep flap reconstruction. However, I need further biopsies for an onco type dx test (my biopsy was insufficient) before a treatment plan is finalized. I know different areas of the country will vary, but just wondered how long others have waited for a mastectomy with immediate reconstruction, has it been weeks or months? There just seems so many things to think about and I feel like a ticking time bomb, part of me thinks to just have the mastectomy and get rid of the cancer asap with a delayed reconstruction. Then another part of me is saying not to panic and rush into a decision I may regret for the sake of a few weeks.

I have an appointment with the surgeon in 2 weeks time and the results of the onco type dx test should be back by then. I am sure they will make their recommendations then (and offer more info on time scale) and I know they are the experts. I just wondered if anyone had any advice or could share their own experience and decisions. As the saying goes "hindsight is a wonderful thing" and right now I wish I had a crystal ball.

Thank you for taking the time to read this and I wish you well in your own journey xx

  • Welcome to the forum SMOR although I'm sorry about your diagnosis and the difficult decision you now have to make.

    Many of our members have found themselves in a similar position on their breast cancer journeys so they will definitely understand your thought process at the moment and hopefully it won't be long until some of them stop by to share their experiences and advice.

    If you'd like to discuss this further with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. Hopefully talking this through with them will help you come to a decision that's right for you.

    We have some information about breast reconstruction on our website but for further information and advice it may be worth getting in touch with Breast Cancer Now.

    We're thinking of you SMOR and wishing you all the best with your appointment in 2 weeks time.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hello Smor, I am sorry to hear you are in this horrible position ,

    I had bilateral mastectomies in September 22 ,followed by chemo from December til March of this year .Felt well throughout and quite happy to go flat . I asked to be put on waiting list for reconstruction though in case I decided to go for it at a later date . 
    I saw the surgeon in July and opted for the expanders and silicone ,I didn’t want the longer recovery with the diep . 
    A week last Monday I actually started the first part of my reconstruction and feel really good and positive , I have a little bust already and more to go in on 19.  It is a very personal choice , don’t rush into things , take your time . 
    I have also been taking Letrezole since March . Good luck and keep in touch xxx

  • Thank you for your message, you sound really positive which is amazing. It is really helpful to hear from others, thank you so much and look after yourself to xxx

  • Offline in reply to SMOR

    Hi there , m sorry to read your post . There is a fantastic support group on Facebook DIEP UK . It’s a big decision so please consider all options. I would say though that an immediate DIEP takes pr ority over a delayed one and these ladies are often waiting for two years. This is because of the backlog from Covid . It takes time to organise an immediate DIEP as they need two surgeons . I have ad previous bc and radiotherapy and smoked , so the first surgeon I saw wouldn’t do it as it had too high a risk of failure . I saw another consultant who agreed to do it if I gave up smoking . I wa ted 6 months for my blood vessels to recover , but they are usually done sooner than that . I had my DIEP 6 weeks ago ( I’m 63) and don’t regret my decision . I hope this helps and I wish you all th best. I won’t lie, it’s tough at the start but worth it in my opinion . ️

  • Offline in reply to LCR

    Hi Thank you for your reply and sharing your experience with me. I do really appreciate that.

    I think because of the size of the cancer and the fact that it is attached to the skin (so skin will have to go to) diep seems the most likely at the moment. How are you feeling 6 weeks post surgery, is your everyday life still restricted ? I don't smoke, so hopefully that will help.

    I hope your recovery continues to go well and that you can enjoy the most amazing christmas xxx

  • Offline in reply to LCR

    I have sent a request to join the DIEP facebook support group - thank you xxx

  • Offline in reply to SMOR

    You’re welcome . The plastics specialist nurse will also show you photos of what to expect with results . My surgery wasn’t straightforward I had to go back to theatre x 3 within 24 hours but 6 weeks on I’m fine . I get a little tired , can’t lift anything , no housework ( yipee !) I have a small breast wound and have a vacuum dressing on but otherwise feeling great ! 

  • Offline in reply to LCR

    So pleased to hear you're doing great. I can defo live with the no housework rule xxx