Waiting for test results

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Hi All, I’ve joined this forum for a bit of support as I know you have probably all been exactly where I’m sat right now - waiting for genetic test results. I was diagnosed with grade 2 mucinous BC in March, then an MRI scan picked up another cancer in the same breast - this one IDC. I had a mastectomy and reconstruction in May using tissue from my tummy. It’s been a long route back recovering from that. When I got my post surgery results back my lymph nodes were clear thank goodness but they confirmed they had also found a lot of DCIS in the breast that was taken. As I’d had three different types of breast cancer under age 50, and my auntie also had breast cancer at the same age, I was referred for genetic testing. I had genetic counselling and bloods taken in November and I’ve got an appointment to get my results on Thursday. Whilst it was my choice to have the test, I must admit I’m feeling pretty petrified right now. I wish this wasn’t all hanging over me - it’s taken me right back to that horrible anxious place waiting for results.i keep trying to put it out of my mind but it’s hard to think of anything else. Just reaching out for a bit of support. Rosie xx

MTT 4 months ago

Hi Rosie,

That sounds like a difficult journey, and the waiting is awful. I have just decided to have a second mastectomy after being told I have the BRCA1 gene following 3 episodes of BC since 2009. The first mastectomy was last year, after a diagnosis a second triple negative BC on the same side. In between I had a hormone based cancer on the other side.

For me, the genetic testing gave me the information I needed to make an informed decision about how to manage the increased risks of another cancer associated with BRCA1. I think it’s a very personal choice, I might have made a different choice if, for example, I was younger, but I feel the mastectomy is the right option for me now.

I hope you get the results you are hoping for, but if not, there are people to talk to, both professionals and those of us on a similar path. The most important thing is to ask lots of questions, get all the options fully explained and make the decision you feel is best for you.

I wish you all the very best and will keep you in my thoughts and prayers

MTT x

Rosie12 4 months ago in reply to MTT

Hi MTT, thanks for your reply. I’m so sorry to hear about your situation. Three separate cases of breast cancer is an awful lot to deal with. I’m glad you feel the knowledge received through the genetic testing has helped you. Knowing they has helped me. I guess it gives you a sense of control and choice about what to do - and when. I have found the whole lack of control one of the worst things about having cancer. I really felt like my life had been tipped upside down and I was being dragged along on this journey where I kept getting more and more bad news. I’ve more or less made my mind up that if my test comes back with a high risk genetic mutation, I will opt for another mastectomy. I know nothing can be certain with cancer, but I think this would help me feel more confident about the future. I will take your advice tho and ask lots of questions before making any decisions. I wish you all the very best for your surgery. Rosie xx

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