Ask the Expert: Learn About Cancer & Genetic Testing with Sue Friedman

[Cafe Becky]

Are you considering being tested for a genetic predisposition to breast cancer? Do you want to know more about your genetic testing options, and what to do with the information once you have it?

The Breast Cancer Awareness Group is welcoming back expert Sue Friedman, DVM, to answer your questions about genetic testing and cancer. Sue is Executive Director of FORCE: Facing Our Risk of Cancer Empowered, an organization dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer.
 
Sue will be here the entire month of October, beginning Saturday October 1st, to answer your questions.

Please post your questions as replies to this post. Sue will post her answers here as well.

Welcome and thank you for joining us, Sue Friedman!

 

[DangerDarling]

After my first mammogram a month ago, I got a letter recommending that I undergo genetic testing to determine "prevention options, such as surgery" due to my high risk of cancer, specifically breast cancer. My mom was diagnosed at 40 and my maternal uncle had it as well. What is genetic screening and what does it entail? Why is this tool helpful for people who are at high risk of hereditary cancers?  

[Mom2threeAR]

Hello.  I do not have a history of breast cancer in my family, but I do have friends who do...or who are survivors themselves. My question is what real experience have people had once they have received the positive genetic test in regards to insurability?  Have they had trouble gaining insurance (new job etc) with the positive result even though they don't "have" the disease detected due to actual cancer growth? I've heard all about the law that was passed to avoid this issue ( sometime between 2004 and 2009?) with genetic testing, but I haven't heard anyone(doctors) speak to real life experience with it. I know with each year the genetic testing is getting more and more accurate to deciphering the comparisons to those family members who actually have/had the health diseases Should one wait until more time passes to gain knowledge on this aspect?. My heart goes out to those making this decision. This question is just from one realistic angle. If only one had to focus on the emotional angle of genetic testing.  That one is tough enough.  Peace.

[Angellinda]

 What do you suggest for Triple Negative Breast cancer patients?  I got mine in 2010 I was 49. My bio mom died from Breast Cancer at age 46. I have DD's that are 31 & 27. Should they be tested? Mammogramswhen? They have NO insurance! And I lost my quality of life! I have no income & my DH has lost his job & our insurance more then 2 3/4 months ago... Any Hope?? Your kind favor to reply is greatly appreciated. Thank you!!

[shellbell1969]

Hello, I was diagnosed with IBC 1 1/2 yrs. ago, and have been successfully treated thus far. I am concerned for my 2 granddaughters, ages 17 and 7.. My oncologist has not brought this concern up..Should I or them be tested for the inherited gene? Thank you

[kittycat813]

I want to know if my Grandma from my dad side of the family had breast cancer what is the chances I have it. I'm 34 with 54ddd breasts.

Thanks

 KristyAnne

[marisab]

There is no one with breast cancer in my family there is however brain cancer should i be tested??

[kpolitte]

Hi, How accurate is the testing? At what age should you be checked for the gene, I dont know if any family has had breast cancer...

[SnarkyMama]

 I was tested 3 years ago after my mom was diagnosed with breast and ovarian cancer.  I was BRCA 2 positive.

I just had prophylactic surgery this past summer, at age 27.  I recommend the book "Pretty is What Changes" by Jessica Queller.  Its a great book that captures the pros and cons of testing, and surgery.

[kcgryhound]

I was diagnosed at the age of 55 after having a couple of other lumps that were benign.  I thought that I was the first in my family to have breast cancer only to find out that I have a half niece who was diagnosed before the age of 50.  She waited to long to have it checked out and by the time she did it had spread to her hip, liver and brain and had passed away only after a  couple of months.  I also have 2 half brothers with prostate cancer and a first cousin with prostate cancer.  They are all on my father's side of my family.  Unfortunately we never knew my father's family because they came over here from Germany in the early 1900's and my dad's mom died while he was a child,my mother's mom also died when my mom was 2, so I didn't know anyone on her side of the family.  I am a triple positive with mixed ductal and lobular cancer with invasive lymphovascular, my question is should I be tested, I do have 3 daughters, 1 son, and 2 grand daughters.

[Sue_Friedman]

Quoting DangerDarling:

After my first mammogram a month ago, I got a letter recommending that I undergo genetic testing to determine "prevention options, such as surgery" due to my high risk of cancer, specifically breast cancer. My mom was diagnosed at 40 and my maternal uncle had it as well. What is genetic screening and what does it entail? Why is this tool helpful for people who are at high risk of hereditary cancers?  

Hi DangerDarling,

This is a great question. Before I answer your specific question I would like to share a few things:

• Genetic testing is most accurate if the first person in the family to have genetic testing already had cancer. So rather than you yourself undergoing genetic evaluation, if your mom or uncle are still alive, it makes sense for them to have genetic evaluation first.
• Before genetic testing, it is recommended that you see an expert known as a genetic counselor. Just like people with a heart problem see a cardiologist, it is important to consult with an expert in genetics before having a genetic test. The tests are not always straight forward and the results are not always easy to interpret. You can find a genetic counselor near you through the web site for the national society of genetic counselors at: http://www.nsgc.org/FindaGeneticCounselor/FindaGeneticCounselorbyUSZipCode/tabid/69/Default.aspx  choose "cancer" as the type of specialty from the drop-down menu. Alternatively you can call the FORCE Helpline at: 866-288-RISK ext. 704 and leave a message for a genetic counselor. They will answer general questions and help you find a genetic counselor in your area.

The BRCA genetic test is a blood test or cheek swab test, so the testing process itself is simple. A qualified genetic expert will ask their patient for a complete family history: who in the family developed what diseases and at what age. This can help them determine whether genetic testing will be helpful in the family, which test to order, and who in a family should consider having testing. A genetic counselor will review the benefits but also the limitations and downsides of testing before drawing blood.

The test itsels has several potential benefits. Mostly it helps people understand more about their risk for cancer. For a family like yours, if there is an identified BRCA mutation, then family members can have testing to determine if they carry the mutation. If they are found to carry a mutation, then their risk for cancer is high, but if they don't carry a mutation, then they may not have as high a risk for cancer as someone with a mutation. There are risk-management options that are recommended for people who are at high risk for cancer. For example, breast cancer screening recommendations for people of average risk are not adequate for those who are high risk. 

I highly recommend finding a genetic counselor in your area (genetic counseling is also available from board-certified experts through Informed Medical Decisions. Even if you think you might not want genetic testing, a genetic counselor can help make sure that you are receiving the most up-to-date information and access to standard of care screening based on your estimated cancer risk.

I hope this is helpful. 

Warm regards,

Sue