21. The link of hope - embryo screening and the BRCA+ reality

Warning!! Controversial blog post going on here. I have been a realist on this whole thing, this BRCA+ thing.

If you are here because you have just found out about your own BRCA+ condition then I hope this post won't frighten you too much but it also lists the things that BRCA+ person may have to consider. For those lucky enough to have had children before knowing about their gene mutation the news today is fantastic, it gives hope for your children and their choices if they too are BRCA+.

It took me years to go through all these stages, decisions, thoughts. I had to list them all. This news story has rocked my foundations. I was steady, heading down my chosen path with unwavering thoughts.. and then this big monster jumped out in front of me. What do I do..what do I do?!! Think, thats what..think. So I blogged and thought and this is the result. It may seem quite angry but this blog is part of my self therapy, helping me vent, helping me cope. I hope it is of some use to my readers too.

This morning's BBC News report came a couple of years too late for me. Some of you (like my parents) might think this news is fantastic. I have spent so long conditioning myself to the prospect of living without children that this news just sent me into a spin. I just have to remember that it wasn't possible for me when I was ready, when I wanted a family - neither was my life ready.

Here's the BBC News link http://news.bbc.co.uk/1/hi/health/7792318.stm

I've spent a good chunk of today thinking about this. There have been times that I've welled up with tears, tried to talk to Chris, tried to understand why I feel so swung off kilter by it. So I put it into perspective:

The couple have screened their embryos because the FATHER is BRCA1+, not the mother. She is 27 years old and probably has the drive and desire to have babies. I did when I was 27..and years before that. The FATHER has the BRCA1 gene - what does this mean? It means that he doesn't have the same dilemmas faced by a woman with BRCA1. He doesn't have breasts and he doesn't have ovaries. Would he be having children if time was running out for him and he had the same life threatening risk and options which would take years to sort out? Can't be answered that one I'm afraid.

This is the black and white, consolidated reality in finding out about BRCA gene mutations :-

Got your Family history of breast cancer confirmed - investigate BRCA gene mutation..... ->

Age 30 - worried about family history. The NHS will not screen a woman until she is at least 30 years old. Hopefully things will change in the next few years as they learn more about genetic breast cancer. As they realise BRCA1 and BRCA2 can trigger cancer in much younger women, they may screen more women at a younger age. For me, I was 27 because I shouted loud but really it is not an option until you are 30 with a big family history. At 30 you have about 5 years of prime egg producing time left before things start to trail off towards menopause land. Stay calm - there are people out there who understand, who will talk and who have information for you. www.breastcancergenetics.co.uk is the site for information if you aren't getting any or can't find any and they run a helpline service open 24/7 365 days a year. Just pick up the phone and call them.

Age 32 - you are BRCA+. It takes 1-2 years to go through counselling in preparation for genetic testing results and to get DNA tested and results returned. Now you are 32 and you are BRCA+ but do you have a partner? Do you need to find one? How many years do you have to sort out the right man with so much else to worry about now that you have found out you are BRCA+? You need to think now..about you and what you want, how you are going to deal with this and what are you going to do next. There are options to consider:

A. Do you just want to investigate IVF and embryo screening programme? This will need counselling and probably a 1-2 year process to get to pregnancy if successful. Beyond children, you still have the gene and you still need to make decisions about your life.

B. Do you put faith into action and just go for raw baby making? There's a 50/50 chance of passing on the gene to the baby, whether boy or girl. The screening option will give your children options in the future if they are BRCA+.

C. Do you want surgery to remove your breasts and remove your breast cancer risk? If you want breast removal surgery it will take about 1 year to go through various counselling sessions to make sure that you are able to deal with this. For me its taken 2 years to get through the NHS system to the point of surgery date from the initial counselling after deciding to get tested for BRCA1.

D. Do you want surgery to remove your ovaries, go into menopause early and not have children? I was counselled heavily on this as it is a major decision. It is something I spent many years thinking about before I knew my my results. This is not to be taken lightly and you need to search the very bottom of your soul to decide this.

E. Do you ignore everything and just carry on with your life. Some people choose this but those people aren't here reading this and they wouldn't have taken the genetic test in the first place so E really isn't an option.

I hope that my BRCA+ sisters (and brothers) out there can push the awareness of this condition out there. It is not some random rare condition - it can be bred, increased - it needs to be faced head on. The impact on the NHS and people needing screening could increase as more people investigate their family history and demand testing. What if they do? The NHS need funding to support this cause.

I have decided to research as many personal BRCA+ blogs as possible and gather them together in one place. Sharing mine and others' stories will give those seeking support and information something extra, personal stuff that can't be handed out in a leaflet. This is a very personal condition, its not black and white at all. It involves many choices and can feel like someone put the fast forward button on your life. There are so many facets to consider and for some it will be overwhelming. I found the loneliness of my situation and worries quite hard and there was no-one out there to share it with or to learn from. I had to hunt long and hard to find people to share this with and it is only now at the point where I have made all my decisions that I have found them.

Thank you for Facebook and the opportunity it has given me to touch base with others who have BRCA+ gene mutations. I have made friends with some fantastic ladies. Together we will support each other. We are the foundations of the support system that is currently so disjointed in the NHS today. The next generation will benefit from the choices made by the women who face this today. We are the seeds.

I choose life.
I will not be broken.
I'm rock 'ard me.

I am here now, living, choosing and I am not going to die of breast or ovarian cancer, not if I can help it!

Not on your nelly.

Ok...blog rant over...and out.