FAMILY RISK ASSESSMENT

posted Tuesday, 25 October 2005

Today I met with a nurse, Bridget, who manages the "Family Risk Assessment" program at Virtua. We spent two hours, going through my detailed family medical history and talking about genetic testing. Most of what she told me was a repeat of the information that I learned at the Living Beyond Breast Cancer seminar. Bridget agreed that my family appears to be fairly healthy and that while there are a few distant relatives who had breast cancer, my history does not strongly suggest the existence of a gene mutation. My age is really the only indicator that I may carry this genetic mutation, so I definitely plan to go ahead with the testing. I asked Bridget what the reasons were that people chose NOT to do the test... her answer: they don't plan to do anything with the information (ie- additional screening, prophylactic surgery, telling other family memebers, etc). Well, I definitely plan to use the information, so I see no reason not to move forward.
I've been talking to Dr Dultz & Dr Cairoli and since the margins of my 2nd surgery still had DCIS present, I am going to move forward with a mastectomy, where they will remove my entire left breast (likely in January). I will be meeting with a plastic surgeon before-hand, to discuss reconstruction options. Part of me is thinking - hey! why not take advantage of this whole situation and trade in my "Asian A's" for a B-cup. Yes, I'd have to update my lingerie collection (ok - so "lingerie collection" may be an overstatement)... but heck, why not? But as I thought more about it... I wonder whether I would ever be able to lay out again in ultimate? If not, I may delay the reconstruction until I am done playing competitive frisbee. You may think this sounds crazy, but I LOVE to play... I've been really sad to take this time off and I miss it terribly. The thought of coming back stronger than ever next year has been one that I hang onto as I stand on the sidelines, watching my girls play... I know that living life a bit lopsided will present its own challenges, but really - I doubt it will be THAT noticable... as it is, I didn't have much "native breast tissue" to begin with (as Dr Cairoli told me!) I think I'd rather live with that than live without the ability to play the game I love....
Also, *if* I were to find that I carry the BRCA1 or 2 genes, I would have to seriously consider additional surgery. With a BRCA1 or 2 mutation, I would have a significant risk of developing breast cancer on the other side... so it might be worth it to do a double (bilateral) mastectomy, rather than just unilateral. I mean, while they're in there, they might as well keep things symmetrical, right!?
So I was all gung ho to get this started...but it looks like it will be a slow process. The test itself is only done by one company & it costs $3k. So, they negotiate with your insurance company to get approval first... which takes a few weeks... and then do the test... which takes another few weeks. I guess we'll wait & see what happens.
On the way out of the hospital today, I met the sweetest little old lady... we were waiting for the elevator together and she was so excited about the fact that the dr had taken her in early and she had gotten done so quickly. I told her "well, you can't compain about that, can you?" And she said - "certainly not. But I don't believe in complaining anyways".. To which I replied "you know, your right... it doesn't really make anyone feel any better, does it?". "Nope" she smiled. She went on to mutter about how thankful she was for the valet parking service at the hospital (it was another rainy day and while so many would have complained about the rain, she totally looked on the bright side and said she was thankful for the valets...) She's so right... in so many ways.s.. and I've smiled several times as I think of her...
More on Genetics & Breast Cancer



Comments:

MARY MADE THIS COMMENT,
It is so good to hear from you again. Just want you to know that you are my "little old lady". I smile every time that I think of you. Your courage and strength is inspiring. Now that it sounds like fisbe is over maybe you can find some time to visit??!! We would love to have you anytime. The kids miss you too. As always you are in my thoughts and prayers.

KATIE MADE THIS COMMENT,
What a brain-full of information to process. I keep thinking of you and I love how beautiful you look without hair.