Hi Ladies, I am confused and worried about the future and thought someone could help. I have PCOS, around 3 stone overweight. My periods have always been all over the place, I have a daughter, it took me 5 years to have her naturally which was difficult!
I came off the pill in June to try and have another child as I have been told my the hospital ‘not to wait any longer’, I am 28 but have just been told I have the Brca1 gene, my Mum has advanced ovarian cancer and had breast cancer which she survived when I was young. The hospital have said no to any fertility drugs because I am considered ‘high risk’ because of the Brca1.
I have been told to have my ovaries removed and then consider a double mastectomy. I feel like a ticking time bomb but in the middle of all of this crap I have to try and get pregnant naturally, if it takes me as long as it did with my first daughter I will be 33, not old I know but the risk is increasing all the time! I don’t know whether to just call it a day and have all the surgery and then accept that I will only have one child or try and carry on with the fear that I could develop the cancer and leave my only child ‘motherless’? xx
Whilst you wait for the other forum users to reply with their experiences and advice you may find it helpful to have a look at the BCC booklet ‘breast cancer in families’.
Also if you feel it might help to talk things through please give the helpline a call as here you are able to share your worries and concerns with one of our trained members of staff. The number to call is 0808 800 6000 and the lines are open 9am to 5pm Monday to Friday and 9am to 2pm Sunday.
I am so sorry to hear of your horrible dilemma. You need to speak to someone in more detail about how high your risks are of developing ovarian and breast cancer and how long you dare risk postponing the surgery. If your risks are very high, as you have said, having only one child but low at risk from these horrible diseases is probably much better than having two children and risking leaving them both without a mother. I think it depends on the type of person you are to a great extent. If you are a worrier and the thought of waiting to see if cancer develops would cloud your life, then preventative surgery will give you the peace of mind you need to enjoy your life. If you are someone who can take risks without too much thought, then this is different, except you have other people also to consider.
I wish you the best with your decision, but you do need to go and ask much more before making it.
Resumably you had genetic counselling before the test and therefore understand just how high a risk you haver of developing overian and/or breast cancer.
Which hospital are you under? Are they experts? Would you not benefit from being seen, if only once, at the Marsden?
What about IVF and freezing embryos? The you could have IVF after preventive surgery - if that’s what is recommended. You can be offered VERY effective screening these days (not locally usually) and maybe do you do actually WANT to have preventive surgery? You need to be speaking with like minded people. The Marsden has a BRCA support group where thesee things are discussed. They are also discussed with clinical experts who will guide you and inform you about your specific circumstances. They will discuss these matters with you and your husband. It dones’t sounds as if your hospital is being as supportive as they might be.