Hi I'm waiting on genetic testing. My younger sister has ovarian cancer. I'm terrified what the future might hold. it's effecting my mental health. Having to take time off work.
I’m sorry you’re going through this at the moment but I wanted to reply because my sister and I have been in this situation. I’m actually the older sister with ovarian cancer and discovered I have braca1 so this therefore required my siblings as well as my children to be tested. The genetics councillors are really fantastic at helping you understand everything, have you had this ? One thing we as a family have been is very open about everything that is going on. My sister tried to dismiss her feelings of being tested as she felt bad as I was going through so much but please don’t dismiss your feelings, it’s a very overwhelming time for anyone, can you share your fears with anyone, a family member a friend or a work colleague? Also the macmillan help line is amazing to help you with your feelings x there is a lot to take on board and it can be overwhelming but I believe knowledge is key to helping you think clearly about everything so make sure if you do research to use amazing sites like ovacome or target ovarian cancer. With our circumstances my sister who herself had mental health issues visited her GP to also help her. One train of thought we as a family have is that if you are positive for the gene you will never be in the position I’m in, you will be monitored forever! This gives me great comfort x lastly and in a good note, my sister was negative! This was such a relief for me and for her it was bitter sweet as it now won’t affect her children but she still had to see me ( her big sister) go through my cancer journey x take care and big hugs x
Thanks so much for your reply. It's been horrific to see what my sister has went through and still going through. She was diagnosed this time last year. Had her hysterectomy which went well. A short time later had to have emergency surgery on her bowel due to a blockage. This time we thought we would lose her. So did the medics. She was 6 weeks in hospital. Unfortunately they care was dreadful. It's really made her very fearful of going through anything else. She had a milder dose of chemo for 17 weeks. Coped well with that. I'm the oldest by 5yrs and so wished it was me instead of her. She also has many other health issues. They have said after her last scan things are stable thankfully. She's worried that myself and my other sister test positive but I've tried to say if we do then we will deal with it. But I'm not coping at all. I have spoken to my GP.Ive not had word back from the genetic team yet. Apparently though there's a 4-5 month waiting list where I'm from. I hope you're doing ok. It just turns your world inside out. Things will never be the same again. x
I’m doing well thank you x yes unfortunately in our area it’s a very long wait too but testing is a long complex process but things will get moving very soon hopefully x before testing you have a counselling session with a genetic counsellor, usually by zoom call so it’s great there’s no travelling ( our genetic centre is miles away!) the counsellor talks everything through with you then takes a full family history, the pro’s and con’s of testing, what they can offer if positive etc etc then you can ask any questions x then forms are sent and blood test forms as you can have this done at your GP x the testing then can take up to 3 months! But once it’s done it’s done and you can move forward x
Just like your sister I too worried about all the braca testing but my mind is eased by knowing if it’s found the person will be taken care of forever, they will never be in my position and that brings me peace , maybe pass on this nugget of information to her and I wish her and all your family the best of luck! Ohhh one last bit of fab info is there is a braca group here on the website!! It’s under cancer by type and then click on the braca forum x x :o)
