Saturday, September 5, 2009

Counselling following a positive BRCA test result...or should I say the lack thereof!

I find I’m not alone in my struggles with this. It seems I’m not the only one who was never offered any type of personal counselling after positive BRCA mutation tests results and their devastating effects on a person. It’s sad really. I have BRCA sisters all over the world and I know of very few who were offered any type of personal counselling after receiving positive test results.

Sure, we received “genetic counselling”, but nothing to deal with the personal issues associated with it...the fear of cancer, our perception of cancer risk, the sense of being “different”, making the decision to have preventative surgery, the huge loss following surgery, second guessing yourself afterwards..."did I make the right choice?", self-image, etc., etc. It’s a big deal and so many people in our lives, both personal and professional, just brush it off. They figure once you’ve had your surgeries and are “on the other side”, you should just get on with your life and forget about the whole thing. Well news flash, it DOESN’T go away, even after surgery!

It’s sad really, in this day and age, we can test for things such as a BRCA mutation, and have preventative surgeries to reduce our risk of cancer and probably save our lives, but we still don’t know how to treat the people aspects of all seems so cold and clinical. Don't get me wrong, medically, I’m not complaining, I’ve had the best medical team you could ever ask for...having a BRCA gene mutation is like having a gold card for medical care, but the mental and emotional aspects of it all seem to get left behind.

I was never really offered any type of support from my genetic counsellor other than a support group in London. That’s over 2 hours away from me and just wouldn’t work. My sister just confessed to me yesterday (yes another’s good for the soul), that last Fall she was so worried about me and how I was reacting to all of this (if you don't remember, she tested negative...maybe a little "survivor's guilt"?) that she emailed our genetic counsellor for help. Her response was blah! Apparently other than the aforementioned support group, the only other offer was a “non-denominational spiritual advisor” at the LHSC. That’s not what I’m looking for. No other counselling was offered or was available...if she could come up with something else, she would let her know....needless to say, she never heard back from her.

I have even thought that maybe this is "female" issue. If it was mainly men dealing with this (and there ARE men who deal with this) and they were having to remove body parts, that you could bet your butt there’d be more resources available, but I hope that this isn’t the case; that we’re past all that. This is the 21st century! But again, I digress...I'm feeling rather sensitive these days! I know there is some support out there, maybe in the bigger medical centres, but so far, I’ve found none really available to me.

All that being said, thank goodness for the internet and online support groups such as Facing Our Risk of Cancer Empowered (FORCE), BRCA Umbrella, the world of blogging and even Facebook. As Lisa said, at least we have each other.

I love all of my BRCA sistas...I really don’t know what I’d do without you!!! XOXO


Anonymous said...

You're so right. I was thrown into a world of fear & confusion when I was handed my BRCA1 status. Everything I learned about it, I had to dig for, many steps I took forward were difficult and muddled. I felt very much alone in all of it... I had my family support, but alone as in.. I had no idea what to do or where to go. It was a horrible process. It took awhile before I learned enough to feel empowered and hopeful. It would be wonderful if it wasn't such a frightening struggle in the beginning.

Teri Smieja

Rochalicious said...

Thanks for this post! I too have been confused about the lack of support out there for women (and men) such as ourselves. I live in Edmonton and though I know of such supports in Calgary, it's hard to live here, go through a scare, and have no idea where to turn. I'm glad to see that I'm not alone in that feeling!