BRCA & Genetic testing help

Hello! I'm new here & I just needed to get my thoughts out because I don't really have anyone who I can talk to.

I have been referred through family history for genetic testing. This was in October and I'm still waiting for contact from them. I know with covid everything is much slower and I'm so lucky to even get this far, so trying to he patient. 

I have a family history of BC, Mum, maternal Aunty & Cousin. My father passed from pancreatic cancer. I am being offered annual high risk testing through MRI scans as I'm only 31. I had my first one a few weeks ago & something was picked up. I visited the consultant yesterday who said it's only very small (5mm) and when they've done an ultrasound they can't see anything so they aren't concerned. But will do another MRI in 6 months to see if it's changed at all. 

Before this I was quite content with regular testing but the more I'm thinking about it, I'm not sure I can live with the unknown. As selfish as it sounds, I don't think I can keep going for MRI scans and waiting for results each time wondering if this will be the time. 

I just wanted to know if anyone else had been in the same boat and can offer some words of wisdom to help me rationalise. I was sat in the clinic yesterday, watching people walk out in tears after clearly being told the news and my heart just sank for them. 

Does anyone know roughly how long the process of testing takes? 

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  • Hi Ashleigh,

    I can't offer any advice, but I am in the same boat as you, having submitted my lengthy genetic history form at the beginning of December and still awaiting contact. I have been getting very stressed with it as my mum has been undergoing breast cancer treatment during this time and my aunt has died from cancer too. 

    The worry is the unknown isn't it? Just wanted to let you know that you aren't alone. 

  • Thanks for you reply. It's comforting to know someone else is going through something similar. 

    I wrote this 2 months ago & yesterday I actually received my appointment with genetics. My appointment is next month. So that might help you with expectations of how long it took. 

    The unknown is definitely the worst part and I'm still so undecided on genetic testing and what it will mean. Not anything you think you'll will have to make a decision on.

    My mum was diagnosed last year so if you need anyone to talk to whilst she goes through treatment, let me know. If I can offer words of wisdom it's to talk it out, rationalising your thoughts and accepting your stress and worries are valid is very comforting.

  • So pleased that you have received your appointment. Thanks, that does give me an idea of timescales, although I expect every hospital is different. Do you think they will actually do the test at that appointment?

    How is your mum's treatment going? We were very lucky that my mum's was caught early in a mammogram and she has had a successful lumpectomy. Radiotherapy to follow. 

    It is all consuming at the moment, I am spending a lot of time going through the potential outcomes and what they all mean. I think once I have some results and I will have a better idea of what is ahead. 

  • They won't do the testing there. They go through family history again. Even though we've done that multiple times. Then they will discuss the options available. From my understanding, they don't hand out testing, they want you to have all the information before you decide to test, because of the implications it can have. 

    My mum is through the worst of it. We had a similar situation, lump on the mamogram then successful lumpectomy. She was supposed to have chemo, but the day before she was due to start, a echocardiogram picked up a benign heart tumour and she had to have open heart surgery. By the time she had recovered, chemo wouldn't have been worth the trauma on the body, so she just had radiotherapy. She had it for nearly 4 weeks but she was okay with it. She has 6 month protein infusions now and that's all. I hope your mum has a stress free treatment now going forward and be on a speedy road to recovery.

    When my mum went through it all, I decided to see a therapist for 6 weeks and it was very helpful. I've decided to see them again to try and help me through making the decisions. 

  • I found i am brca 1 16th feb 2021, it took 2 yrs to get a result thanks to covid-19, im 43 and i had my ovaries and tubes out in oct 21, i couldnt personally just do mammograms and mri's ( though still am) until my op date comes through for my dmx and im staying flat, thats a mental journey in itself. You have to do what is best for you emotionally and physically. Good luck