Topic: Share your story of Genetic Testing

Forum: Genetic Testing — ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM), and VUS (variants of unknown significance)

Posted on: Sep 22, 2015 02:16PM - edited Sep 23, 2015 11:15AM by moderators

Posted on: Sep 22, 2015 02:16PM - edited Sep 23, 2015 11:15AM by moderators

moderators wrote:

Dear Members,

Would you be willing to share your story about genetic testing? (no pressure, only if you are inspired!)

We are interested in the following questions: What led you to doing the testing? What were your results, and what choices have you made based on the findings? Was payment an issue? How have you discussed these decisions with your family? What suggestions would you have for others?

Please share your story here, or send us a Private Message. We will be posting your stories here Community Members share their Stories, in order to inspire other visitors to our site who are in a similar situation. If you chose to submit your story, would you please send a photo with it?

Many, many thanks!

The Mods

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Sep 23, 2015 10:08PM vlnrph wrote:

Would you consider renaming this forum to include more than just BRCA 1/2mutations? A few others have posted here anyway but, with the popularity of multiplex panel testing, many of us are finding that our cancers are associated with genes outside those "classic" examples...

Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Sep 24, 2015 09:44PM vlnrph wrote:

Thanks for broadening the category (I appreciate the two decades of research/knowledge already behind us regarding BRCA 1/2 and hope some of the other mutations will be as well studied in the future!)

I decided to request testing despite minimal family history because of the presence of two tumors with different pathology at diagnosis. The genetic counselor at our cancer center agreed and chose a lab that would cover a unique situation within the Scandinavian population. Some companies fail to include this particular factor on their panels which is why I believe it is so important to receive advice from a specialist in the field who keeps up to date, not just letting your primary care provider send in a sample or ordering a kit that you pay for out of pocket.

Sorry I don't have a photo to submit but just imagine a blue eyed blonde...

Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Sep 24, 2015 10:44PM - edited Sep 24, 2015 10:51PM by suemed8749

That's very interesting, vlnrph. My Danish grandparents had 4 sons and 3 daughters. All of the sons' daughters (5 of us) have been dx with breast cancer; one died from the disease. I was dx in 2008 and based on family history and my multifocal disease, I was tested for BRCA 1&2; negative results. Blue Cross didn't want to pay for it, but my wonderful onc's PA kept adding up the risk factors until they caved. I'm glad I was tested for my daughters' sake, but I have no idea if I was tested for the "unique situation within the Scandinavian population". Did you know that we of Scandinavian descent are also more prone to developing Type 1 diabetes? Maybe blondes don't always have more fun!

Dx 1/15/2008, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Oct 9, 2015 06:41PM - edited Oct 9, 2015 06:45PM by TectonicShift

This Post was deleted by TectonicShift.
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Oct 9, 2015 06:52PM scrunchthecat wrote:

vlnrph - Would you mind sharing the details of the test for the "unique situation within the Scandinavian population"? My father's family is 100% Finnish.

Thanks!

Dx 5/15/2015, IDC, Right, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2- Chemotherapy 6/6/2015 Taxotere (docetaxel) Targeted Therapy 10/19/2015 Herceptin (trastuzumab) Targeted Therapy 10/19/2015 Perjeta (pertuzumab)
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Oct 11, 2015 08:51PM vlnrph wrote:

Hi scrunch, or should I say "kiitos"? I'm sending you a private message regarding RAD 50 mutations.

Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Oct 15, 2015 02:01AM Magstermom3 wrote:

Im getting tested from the brca1 gene....I find out Nov 12th if I'm positive or negative...my mother had BC twice and her sister had BC and tested positive brca1.. I'm young and healthy and have 3kids...I'm nervous and its keeps getting worse as the days go by..

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Oct 15, 2015 02:59AM exbrnxgrl wrote:

From the minute I found out I had bc, BRCA testing was on the table. Being of Ashkenazi Jewish heritage moved me to the front of the line. Additionally, my paternal grandmother had died of bc, and I had recently lost my younger sister to uterine cancer.

My HMO arranged for me to see a genetics counselor, asked that I take an online course and test on the BRCA mutations as well as doing a very thorough family health history. The health history involved a call to my parents and turned out to be a rather long, and somewhat comical conversation. They spent a long time arguing over what each and every relative died from and when they had died ( "No, she didn't die in 1963. She died the year our car caught on fire on the way back from the Catskills.")

In the end, I was negative. This mattered little to me, but I have two adult daughters and the implications for their future health concerned me. I hope that research continues to look at genetic mutations as I feel there may be more than we currently know.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Oct 15, 2015 10:49AM - edited Oct 15, 2015 10:53AM by moderators

Magstermom3, please keep us posted. We understand how nerve-wracking it is. Here is our section on genetic testing, in case you want to take a look: http://www.breastcancer.org/symptoms/testing/genetic

exbrnxgr, Thank you so much for sharing your story!

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Oct 15, 2015 05:25PM - edited Oct 15, 2015 05:26PM by denise-g

My family is in the middle of genetic testing now. I was diagnosed with Stage 3 - ER+ PR+ Her2Pos four years ago at age 55. Never had been any breast cancer in either side of family for at least 100 to 150 years - we had pretty good records. So at that point, was not tested.

Then 1.5 years later, my 80 yr old mom was diagnosed with Stage 1 cancer - ER+ PR+ Her2Neg. Since I did not have children and mom was diagnosed at an advanced age, my Onc thought it was a "fluke" we both got cancer.

But then my sister-- only sibling - one year after my mom diagnosed also at age 55 - Stage 3 - ER+PR+ Her2Neg in April, 2015. No more flukes.

My sister was just tested and has the Chek2 1100 delc gene mutation. My mom is being tested this month so we can see what side of family. Then my sister's 31 year old daughter will be next. I will probably do it somewhere along the line, but not as concerned since I don't have children.

We go to the University of Michigan which has a large genetic testing center. They told us they are seeing a lot of Chek2...

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2- Surgery 11/23/2011 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left) Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)

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