Hi all
I am new to this forum so please bear with me but I am really struggling at the minute. I had BC five years ago, lumpectomy and radiotherapy then my yearly mammograms which have all been fine until the one I had there in March 2019. I was called back five weeks later for further tests, another mammogram, ultrasound and a biopsy as they had seen calcifications on the scan.
A week later back to see my original consultant to be told I had high grade DCIS and it would have to be removed and then followed with radiotherapy. Had my first surgery on 22nd May then back 10 days later feeling good about everything to be told they didn’t get a clear margin, back in again a few days later for a second surgery which didn’t take long, home the same day as before. Back to see the consultant last Monday to be told that unfortunately they didn’t get a clear margin and I will need a mastectomy as they won’t go in a third time to take more tissue away.
As I have asked for reconstructive surgery my surgeon has referred me to one of his colleagues who carries this out, I now have to wait three weeks to see him to discuss my options.
I can’t get my head around that I have stage 0 BC but need my breast removed. My BC last time was invasive stage 2 and they got it all away with no issues. I’m really struggling to come to terms with this. I have been off work for a month recovering from these two surgeries just back today and have no idea how long I’ll have to wait for my surgery.
I have asked for counselling but have to wait for six weeks for an appointment.
Hello - I’m so sorry you’re going through this, it sounds as though you’ve had a terrible time with multiple surgeries.
Like you, I was diagnosed with DCIS, 7.5cm last May, it took three months before I had my mastectomy and Diep reconstruction. I talked to my surgeon about the possibility of preserving the breast but in my case the DCIS was too large. I found the wait interminable; I contacted NHS England and NICE to better understand the guidelines for treating DCIS and was basically advised that with waiting times not being met for invasive cancers, DCIS surgery is usually delayed.
Do you still feel you are able to trust your clinicians? You are entitled to a second opinion and could go back to your GP to request this although in reality it may not speed things up but it could offer you peace of mind. It may not change the outcome but if it allows you to ensure your questions are answered.
Around the time my own surgery was delayed, a lady in a similar predicament posted the details of the surgery she required on Twitter asking for local hospitals to get in touch if they could perform the surgery any sooner - someone did get in touch and she had her surgery more quickly.
I would be very happy to share with you pictures of the reconstruction if that would help you and I also did a blog around the time of the surgery - DM me if you would like pictures or details of either.
The worst part I feel is perhaps this time now that you are working with, the uncertainty. You are in limbo and there is a sense of waiting for everyone else to decide what to do. Hopefully when you have met your consultant and a plan is in place you can start to come to terms with surgery.
If I can help, please let me know xx