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Old 08-31-2007, 02:23 PM   #1
Kimberly Lewis
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Location: Hilton Head Island, SC
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Unhappy Anyone BRCA1 or 2 that passed it on to the kids?

Hi all, just returned from a trip to NYC to go to a genetic counselor with my daughter. (dark haired girl in my avatar)

She also tested positive for BRCA2 and I was wondering if anyone had some sage words of advise for me? The counselor was wonderful, calming and encouraging. The news still was hard to hear. My sis and son both came up negative and I really had high hopes for Jessica too. I just hate that she has to be tested now for the rest of her life and she is only 25! sigh.... I take some comfort in the hope that she will never be diagnosed with locally advanced BC as I was. She should have early detection with these scans! I just know that the stress is hard to deal with and she will have it for a lot longer than I will!
thanks girls... Kim
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 08-31-2007, 02:39 PM   #2
Mary Anne in TX
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Oh Kim, that's the pits! How scary that must be for you!
I surely do wish it weren't so. But she knows. Maybe she'll find some strength in just knowing and checking. It's not good, but I just have to believe that her world will be so different. That they will learn from us and keep fighting for a cure....yes a real cure!
She's lucky to have a mom who loves her so much.
ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 08-31-2007, 03:32 PM   #3
tousled1
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Kim,

I'm so sorry that your daughter tested positive. But look at the bright side - at least she knows what her risk is and this should push her to have regular exams and follow-up. I know a woman I worked with who was also BRCA positive - her mother and her mother's sister had breast cancer. She opted to have a propolaptic (spelling?) double mastectomy and had no regrets. She did have reconstruction done immediately as she was a young woman at the time. I was fortunate that I tested negative. I only had the testing done because there was such a high incidence of both breast and ovarian cancer on both sides of my family. I wanted to make sure I didn't pass a gene on to my daughters. I'm negative so they are safe. But even with that my oncologist recommended that they start getting regular mammograms at age 30. They are now 30 and 31. My 31 year old had her first mammo last year and everything was ok.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-03-2007, 11:03 PM   #4
harrie
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My mother and her sister (my aunt) both experienced breast cancer starting in their early 40's. Last yr I was tested positive for BRCA2. My daughter and my 2 sisters were recently tested negative. My son has not been tested.

On the positive side for your daughter, many women get breast cancer at a young age and are not even carriers of the gene. She will be monitered so closely that even if the smallest of cancers are started they should be able to catch it early. My surgical oncologist, whose specialty is genetics, and who was the one who tested my daughter, told me of a family where the grandmother did not get cancer until she was in her late 80s and she had the BRCA gene.

Interesting, isn't it?

Remember, just because she has the gene is not a guarantee that she will get BC. Likewise, just because a person does not have the gene does not guarantee they will not get bc.

Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-04-2007, 09:07 AM   #5
Kimberly Lewis
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Smile Thanks!

I really appreciate your comments - I know she is in good hands with a great Dr. who will really monitor her. Her attitude has been good also which really helps me. I know we would all rather our children are spared this but...
I will continue the good fight as long as it is possible with the support I get here. thanks, Kim
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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