I was so certain the test would be negative!

Kimberly Lewis · 05-10-2007, 07:10 PM

Don't know why I was so positive or so deluded after all I have been through! My BRCA 2 is positive so I spent the evening telling all my family that is directly affected that they should be tested also since they now are at a 50% probablility of being a carrier also. Don't know why I just went so blythly along with this just assuming I would be negative! Yeesh, I feel like a dope. The kids took it well, my sis, bro and all their families so under the gun now! Anyone else go through this and any advice? Does this mean I should go back on Herceptin again? I am a bit bewildered... Thanks, Kim

Becky · 05-10-2007, 08:01 PM

Kimberly

I am so sorry about your news. What a blow it must have been!

As far as added Herceptin - you do not need to do this. You have done everything you can do for risk reduction (ie: removing both breasts and the ovaries - I am assuming the hysterectomy removed the ovaries and tubes and not just the uterus. If not, the ovaries and tubes need to be removed).

Make sure that you get your colon checked at normal intervals as well.

You will be fine since you were diligent even before you needed to be.

I am keeping my fingers crossed that your family is fine.

Big hug to you tonight.

R.B. · 05-11-2007, 02:32 AM

I am sorry to hear your news.

I know very little about BRAC1. I read a book about its discovery and am not unsure I was much wiser at the end.

Food can alter gene expression quite significantly. The China Study Colin Campbell, and Genetic Nutrioneering both emphasise the importance of diet and the relationship of diet and genes. Exact view points and recommendations differ but the core values seem to run through many dietary books on cancer inflammation etc.

We can influence our genetic outcomes. Risk profiles are changed by mutations but things are not preordained.

I do not know enough about BRAC1 mutations to comment more but this trial does show BRAC1 is susceptible to manipulation through diet. (How that relates to a mutation I have no idea is up or down expression good etc)

http://www.ncbi.nlm.nih.gov/entrez/q..._uids=10806298

Please talk to your doctor about dietary changes. Fish oil can cause blood thinning.

Lolly · 05-11-2007, 09:25 AM

Hi Kim; I'm sorry you're facing this added worry. You are to be commended for keeping your family's future well being in mind by having this question answered, and hopefully that will ease the burden somewhat.
I love your picture!

<3 Lolly

Jean · 05-11-2007, 12:09 PM

Dear Kim,

I am sorry to hear your news

But you have been so dilagent and your family is so lucky that you are
such a protector of them.

Sending you a big hug,
Jean

Soccermom · 05-11-2007, 06:36 PM

Dear Kim,
I am sorry that you have tested positive for BRCA2.
I was tested in 2002 after a cousin tested BRCA1+. Due to a significant family history and my ethnic backround (Ashkenasi Jewish) I tested. I was negative.
Fast forward just two years and I recieved a diagnosis of Stage IIb Her2neu+++ BC.
The most important thing that I can suggest,if you havent already done so,is to see a Certified Genetics Counselor. The link below will help you find one in N.C.
Please also go to FORCE (Facing Our Risk of Cancer Empowered) it is website for those who are high risk and or BRCA+. The constituency there believes that "knowledge is power" and you will find many ,many folks ready to answer your questions as they arise
Take some time to digest this news and be kind to yourself

http://www.nsgc.org

Soccermom · 05-12-2007, 07:24 AM

Dear Kim,
I wanted to let you know that there is a form letter that is printable on site that may help you with contacting relatives that may be far flung or that you have had little contact with.

Warmly,Marcia

Mary Anne in TX · 05-13-2007, 02:48 PM

Kim, I wish that your results had been different. What a burden for you right now. But they are blessed with who you are and all you bring to them. My mother, one aunt, and my grandmother each had something rather horrible called progressive supranuclear palsy. Even though I know that I too might end my life as they did, I wouldn't change being "one of them" for anything. They gave me so much more than that possiblity of fate. They blessed me throughout my life with their love, courage, wisdom, and love of God that molded and shaped me for my good. May you be blessed with the knowledge that you give so much more than that gene and possiblity. The total you is so very much more. Love to you all, ma

Kimberly Lewis · 05-15-2007, 04:04 AM

Thanks for the encouragement! You guys always give me hope. By the way - I gave up pottery for many reasons, and the BC being one of them. But posted my most recent work of "art" the collage of my bald head surrounded by mastectomy scars as petals - I have really loved playing around with this and hope to post some new artwork soon. love, Kim

Lani · 05-16-2007, 02:19 AM

although it refers to BRCA1, someone at the U of NC might be doing similar research and might be be interested in studying your family (I believe they used to have quite an active medical genetics department, otherwise perhaps try Duke)

Hope that, although it may just seem like technical jargon, that this comes out to be useful in some way to you or your family:
Cell Oncol. 2007;29(3):241-8. Links
655Val and 1170Pro ERBB2 SNPs in familial breast cancer risk and BRCA1 alterations.

Tommasi S,
Fedele V,
Lacalamita R,
Bruno M,
Schittulli F,
Ginzinger D,
Scott G,
Eppenberger-Castori S,
Calistri D,
Casadei S,
Seymour I,
Longo S,
Giannelli G,
Pilato B,
Simone G,
Benz CC,
Paradiso A.
National Cancer Institute-Bari, Italy.
Human ERBB2 presents several SNPs. One of these, Ile655Val, introduces a structural change in the transmembrane region of ERBB2 and has been the focus of debate over its potential role as a susceptibility marker for breast cancer risk. Another SNP, Ala1170Pro, introduces a structural change in the carboxyl-terminal regulatory domain of the protein, but its clinical and biological importance remains undefined. The aim of this study was to investigate the association of rare alleles of both SNPs and the risk of developing breast cancer, BRCA1 alterations and clinical-pathological features of Caucasian breast cancer patients with familial history of breast/ovarian cancer. The originality of the present paper is that it is the only specifically focusing on the relationship between ERBB2 SNPs and familiarity/BRCA1 characteristics. A consecutive series of 628 patients with first diagnosis of breast cancer and 169 healthy people had DNA analyzed for both SNPs. Genotypic or allelic frequencies of ERBB2 SNPs in breast cancer patients were similar than in controls. The variant allele 655Val was significantly associated with younger age (p=0.009) particularly associated with patient family history of breast cancer (p=0.02). The 655Val allele was also more commonly found in invasive, while the variant 1170Pro in estrogen receptor positive breast cancers. Furthermore, this last SNP seems to be strictly associated with the presence of BRCA1 polymorphisms. In conclusion, these findings point to the existence of an association of ERBB2 allelic variants at both loci with specific breast tumor phenotypes and to the need of deeply investigate different gene SNPs association for risk defining.
PMID: 17452776 [PubMed - in process]