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New Breast Cancer Gene Research Study

May 29, 2012

Earlier this month I received a letter from Hoag Hospital informing me that a research test for a new breast cancer gene has just been made available.  This news is both exciting and terrifying at the same time.  You see, the breast cancer genes – BRCA1 and BRCA2 – only account for 65% of the women diagnosed.  The day after my own diagnosis, my surgeon told me that I most likely either 1) had one or both BRCA genes or 2) was HER-2 positive.  This hypothesis was based solely on my age at the time – 33.

Well, I was neither BRCA positive or HER-2 positive and as a result I am part of the 35% of women of whom doctors have NO IDEA why we developed breast cancer.  It could have been caused by toxins, the environment, BPA, Parabens, other genetic factors, or maybe even this new breast cancer gene.

hoag_hospital_breast_cancer_gene_test

Test results are expected to take anywhere from 6-12 months where I think my original BRCA testing took 2-3 weeks.  I’m not freaking out about the test at all because it can only reveal answers, right?  If I don’t have it then I don’t have it and I remain in the 35%.  If I do have the mutation then that opens a hereditary can or worms.  Where did it come from and who else might have inherited it? Considering the test is so new, I’m sure that also means answers are scarce.  It will be a waiting game, regardless.

Today I’ll meet with the genetic counselors at Hoag Hospital to discuss what’s involved.  My only immediate concern is the letter states that if you “have been diagnosed with ductal carcinoma in situ (DCIS) and not invasive breast cancer…you are not eligible for this study.”  I was diagnosed with both.  So, I’m not quite sure where that leaves me.

I’ll definitely update you on what I learn today.  I certainly can’t find ANYTHING on the internet about a newly discovered gene.  Yes, lots of proteins and science jargon that I don’t fully understand but nothing about a ground breaking breast cancer discovery.  I asked a doctor in the #BCSM community and she says she has heard rumblings of a BRCA3 gene mutation but nothing else.

What do my fellow survivors know about this test?  Have any of you been contacted?

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{ 16 comments… read them below or add one }

Mama Bub May 29, 2012 at 8:42 am

Huh. Well, I hope you get some clarity today. It seems like this might be the kind of information that might be more helpful to others that it will be to you directly, right? Either way, thinking of you today, friend.

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Wendy May 29, 2012 at 9:53 am

It depends. Even though I tested negative for BRCA 1 and 2 it might mean I might test positive for whatever this new gene is. I’m just anxious to get more information to share with my readers. I have a gut feeling that this study won’t apply to me though. So, we’ll see.

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The Woman Formerly Known As Beautiful May 29, 2012 at 11:35 am

Hi Wendy — I didn’t realize you’d been diagnosed with breast cancer and I’m so sorry. Especially at your young age. You sound like you’re taking a thorough and pragmatic course. I’ll keep following and wishing you all the best.

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Wendy May 29, 2012 at 5:45 pm

Thanks for your sweet comment. It’s been nearly four years now since I was diagnosed and I’m currently considered N.E.D. which is great. Today’s meeting was just to get more information and sign up for an extensive research study being done at the University of Washington. I’ll definitely keep everyone posted!

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Nicole May 29, 2012 at 3:23 pm

I want to know what happens!!! LMK!

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Nicole May 29, 2012 at 3:24 pm

P.S. because I don’t understand any of those code words and Klingon language you used in your post.

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Wendy May 29, 2012 at 5:48 pm

Thanks for the idea! I’m totally writing the “Girlfriends Guide to Understanding Breast Cancer!” Chapter One: The Lingo. You think I’m kidding! I’ll credit you for giving me the idea.

The meeting was fine. No great revelations were made today. Just had to sign my name on the dotted line so I can participate in the study.

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brigitta May 29, 2012 at 10:29 pm

Wendy, if you find any obscure medical journal articles you want access to, let me know what they are and I can try to get them for you when I’m logged in to the VPN on my UCLA Mednet account.

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Wendy May 29, 2012 at 10:43 pm

Ooh! Thanks for the offer! I’ll remember that for sure!!

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Nancy's Point May 30, 2012 at 8:39 am

Wendy,
There’s a lot of waiting and a whole lot of uncertainty in this cancer gig isn’t there? I, too, have heard rumblings about another gene, but unfortunately I don’t know any details either. There are still so many unanswered questions. I am BRCA2 positive and there’s a lot of baggage that goes along with that knowledge.

I hope you got some good information. Looking forward to hearing more about it.

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Caryn B May 30, 2012 at 8:45 am

I know a little bit about the test from my studies as an RN. I hope you do in fact get an opportunity to participate in the study. I’m pained at the fact that we have so much knowledge and have advanced so far in the field of medicine and technology but still have not been able to find a cure for cancer. : ( I definitely want to read an update on what you find out at Hoag.

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Wendy June 4, 2012 at 12:03 pm

Thanks Caryn! I’m doing a phone interview tomorrow with the lead person on the study. I’m definitely a candidate but unfortunately the test results won’t even be available for almost a year. My gut tells me there’s a cure out there or at least an understanding of what the cause is. I’d be happy with that!

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Ashley May 31, 2012 at 8:57 am

This is fascinating… I talked to my mom and it turns out that she WAS Her2 +… which I didn’t realize. But so awesome that they have new tests out there to nail down another reason for BC. F*** cancer…

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Wendy June 4, 2012 at 11:54 am

Ash – Did you mom undergo Herceptin treatment? I can’t remember how long ago she was diagnosed and I *think* Herceptin is a fairly new treatment for HER2 positive patients.

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Presley's Pantry May 31, 2012 at 9:37 pm

I am so in the dark when it comes to the world of breast cancer… Am going to continue reading anything and everything you have to say, and want to know about the results of HOAG as well. Sending you big love!

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Wendy June 4, 2012 at 11:52 am

Here’s the thing: Considering breast cancer is the number 2 killer among women, we must not be in the dark about this disease! I really hope to change that and I have something fun up my sleeve to help do that! Thanks so much for commenting. I definitely hope you come back! :-)

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