Positive Braca2 results

Hi Lizziex and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi 

I have tested positive for the Brca2 gene last week.  This was expected but horrible to hear the results.  I am opting for a Mase Tomy and tube and ovary removal. 

I would also like to jump on this post  if that's ok.

Sam. Xxx

Hi Sampa 

I am sorry you have been diagnosed with the BRCA gene. Even though you may of expected this, I know what a shock that would have been and how much this will change your life. Having the surgeries although daunting, is the best thing you can do for yourself to insure you remain cancer free and live a long and healthy life. Years ago they would have offered a full hysterectomy alongside the mastectomy but my niece just had her ovaries and tubes removed. This surgery was done first, and her double mastectomy was done a few months after. 

Have you spoken to your team yet about your decision? Do you have other family members that have already been tested, or now need testing? Although I do not have BRCA myself I am surrounded by family members that do and I am happy to chat. 

Hi 

Thank you.  I am still waiting for my first appt with Gynae and the breast team hopefully this will not take too long.

My sister and dad have tested positive and my sister is currently living with stage 4 secondary breast cancer.

I am having the surgeries so hopefully I can live a full life without the need to be worried about getting breast or ovarian cancer.

Thank you for reaching out.

Xxx

I am sorry to hear about your sister. That is hard on you all. Does your dad receive regular prostate checks? 

I think the timescale for surgery depends on what area you live in. For my family waiting times have really varied as we are living in all different parts of the UK. One of my relatives has been waiting since October for the genetic referral just to have the BRCA test, and has just been told that it will be within the next 26 weeks! It is so frustrating, you just want to know and then get the surgery done, the waiting is the worst bit! 

Thinking of you and your family, I am so sorry you are all having to deal with this. 

I hope it all gets sorted for you and your family.  My referral for testing took about 6 months from them accepting the referral to getting the results.  

Good luck with you and your families journey.

Take care  

Hi Lizziex and Sampa I learned on Friday (2 days ago) I am a BRCA2 carrier and would like to connect with people who are deciding what they are going to do next for information sharing and mutual support. Let me know if this might be of interest. Sending you love and strength with what you are going through. 

Hi Lizzie

Like a lot people I had very little experience of cancer in my life, that is, until I went looking for my birth family, I was adopted at seven weeks old. I was sixty when I went looking for information and I found out that my mother had died of cancer when she was forty, I would have been eight. Luckily, I found out that I had a half sister who was eight years older than me. We are great friends now. Unfortunately, she too has been fighting cancer, in her case for twenty-two years. It was because of her I went for genetic testing as she had inherited the BRCA2 mutation. Testing proved that I had too. From the original test to finding out I had prostrate cancer took only three months, I had a PSA test, an MRI scan and a biopsy, all of which proved positive. My prostrate was removed four months later. Unfortunately, my cancer has returned twice and I’ve had radiotherapy and chemotherapy (2022 & 2024).

I’m currently having hormone therapy and for the last two years my PSA has been undetectable. It’s eight years since my first diagnosis and my consultant is confident I have at least another ten years in me. I’ll be eight-four by then which is a good age for any one, so I can’t complain, though I will obviously. I have two sons aged forty-two and forty-three and they have been told to get tested when they are forty-five. Fingers crossed they are clear.

For me the important thing in the whole process has been early detection as I’ve never had any symptoms to warn me. I currently get checked every three months and, although that can be stressful, the longer my PSA remains undetectable the more I feel confident it will stay that way, if I keep taking the medication.

At twenty-eight and aware of your condition I think you are on top of the situation and will get early treatment to give you a long life, at least eighty-five, hopefully.

Regards

Terry Benwell