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Writer's pictureIntersex Sarah

Cancer DCIS Diagnosis

On the 23rd of November 2022 I was told that I have early stage breast cancer, following a routine surveillance check.


Even though I knew I have the BRCA2 gene alteration and have been undergoing checks for the last three years, and that my risk was significantly greater of having cancer in my lifetime, it’s still a shock when it happens and you are told the words, “I’m afraid it’s cancer”.


The variation of cancer I have been told I have is called Ductal Carsonoma in Situ (DCIS) - this means that it is in a very early stage and is localized to the ducts in the breast, and therefore cannot spread and is not an invasive/aggressive kind. Therefore it is very treatable.

DCIS diagram

We were informed that the best course of treatment due to the BRCA2 gene alteration would be to have a double-mastectomy and to not leave it too long. It was weird, we were just told this news and there we were discussing surgery and holding different types of implants in our hands - it was so surreal.


After the diagonsis


Looking at the statistics, after my Bilateral Salpingectomy in January 2022, it showed that my chances of getting breast cancer increases considerably from the age of 35. So, last year myself and my fiancée had been discussing the idea of potentially doing preventative breast surgery to reduce my risk. So we had already had that conversation.


The next few days were a bit of a blur. Both of our jobs gave us time off to be together and talk, which was so important. It was information overload and to have someone there to bounce thoughts off of was so helpful. Also, my step-mum gave me some very useful advice to write everything down, so I compiled a pros and cons list for all of the options and this really made the choice easier for me to see.


Decision time


So, I decided to go flat instead of having reconstruction. After looking at my pros and cons list this made complete sense for me. There was less risk, a quicker recovery time and only one surgery. I had seen bits and pieces previously about individuals who decided to embrace being flat, instead of going through reconstruction and something about that resonated with me.

"It's important that you make the decision that's right for you."

Once the decision was made and we had the appointment with the consultant/surgeon who was going to do the procedure it felt like a massive weight had been lifted. The decision had been made and now we could just think and plan ahead.


My surgery was scheduled for the first week in January, so not too long away. I was amazed at the speed of everything as I waited over two-years due to the pandemic for my bilateral salpingectomy in Jan 2022.


Preparation


The time between making the decision and the operation was a busy one. Christmas was in the middle and we were both researching like mad to understand what was needed pre, during and post op. There was a lot of information out there. We took the time to sift through everything and my fiancee is extremely good at making lists, so we noted useful bits down.


Over the few weeks leading up to the surgery I had several very vivid dreams. It was on my mind a lot and I did have moments of feeling overwhelmed and getting upset. What really helped was having the support of my amazing fiancee, as well as the messages of support and check-ins from all of my friends and family - it meant the world and seriously helped me process everything.


I will talk more about all the things that helped me in my next article about my experiences having the bilateral double-mastectomy.


Support


That was the story and my experience of my double-mastectomy diagnosis. I cannot thank the staff at the Breast Care Unit at Milton Keynes University Hospital enough for everything they have done for me - they have been incredible.


On the day I was told I was passed a green folder that had loads of information in and links to various trusted websites and other support groups and networks. It was very useful to have all of this information, especially from the start.



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