veggievet

Dear Daughter,

Please e-mail me at: suefriedman@facingourrisk.org and I would be happy to connect you with other women making these decisions.  Some women do decide on prophylactic surgery without genetic testing but it is important to at least get input from a genetics expert (ie-not just a breast surgeon--most are not experts in genetics).  As far as the issue of sparing vs. removing the nipple, it is also a personal choice.  There is emerging research that suggests that under certain circumstances keeping the nipple might be safe.  Other surgeons suggest saving the areola and removing the nipple.  There are many options out there.  I would be happy to direct you to resources on prophylactic mastectomy and also help you find a genetics expert in your area. 

Hugs and love,

Sue

P.S. For me genetic testing was the right decision.  But I saw a genetic counselor first.  Particularly if you have NOT had cancer, in general the test is most "informative" if someone in the family WITH cancer has the test first.  But I promise, a genetic counselor will explain all of that to you and help guide you on where to go from here.

Hi Christine,

You might also consider visiting FORCE: the website is devoted to hereditary breast and ovarian cancer and many of the women there have had to grapple with similar decisions.  The website is at:

http://www.facingourrisk.org

Although surgeons can be great for discussing cancer management, often I find that genetics experts are most up-to-date with risk and risk-reduction statistics and tips on discussing these issues with your support team.  Have you seen a board-certified genetics expert?  I would be happy to help you find someone in your area.

Hugs and love,

Sue

Dear Tweeker,

Deep breaths my dear!  I'm so sorry that you are dealing with this.  This still can be benign but I'm glad that you are being proactive about it.  I second the recommendation of speaking with a genetic counselor.  Do you have one? Has your health care team done an MRI?  MRI is a bit more sensitive in distinguishing cancer from benign lesions.  MRI is also considered standard-of-care for BRCA carriers.  I also have a BRCA 2 mutation by the way.  Please feel free to e-mail me at: suefriedman@facingourrisk.org if you'd like to chat.

Also you might want to check out the website for FORCE: Facing Our Risk of Cancer Empowered at: http://www.facingourrisk.org which is a website devoted to hereditary breast and ovarian cancer, and women with BRCA mutations.

Hope this is helpful.

Hugs and love,

Sue

Dear Jule,

DEEEEEEEP breaths my dear!  I know that this is scary but you are not alone.  It is good that your doctor is taking this seriously but it doesn't have to be cancer.  I'm so sorry about your sister, I'm sure that makes this even scarier.  I was diagnosed at 33 and I'm an 11-year survivor.  If you would like to chat and need more support feel free to e-mail me at:

sueanddan@att.net

Hang in there honey and keep us posted.

Hugs and love,

Sue

Hi Anne,

There is an organization specifically for women at high risk for hereditary cancer.  The organization is Facing Our Risk of Cancer Empowered (FORCE) at http://www.facingourrisk.org .  There are resources specific to your questions.

My recommendation (in addition to visiting FORCE) is to consult with a board-certified genetic counselor.  They are the experts in cancer risk and will discuss your family history with you and then help you decide whether or not to have genetic testing.

If you e-mail me at: sueanddan@att.net  I'd be happy to help you find a genetic counselor in your area.

Warmest regards,

Sue

Hi Cindiaba,

Unfortunately oncologists and breast surgeons aren't necessarily the experts in genetics.  My strong recommendation is for you and your mom to find a board-certified genetic counselor.  They are experts in cancer genetics and hereditary disease.

Most cancer is not genetic.  Your mom's diagnosis in her 40s increases the chance it is genetic but doesn't mean it is.  But there really is no specific "genetic" type of breast cancer so unless her oncologist did genetic testing (and your mom would know) I don't think you should take that as the last word. 

I have a BRCA 2 mutation and do advocacy for the BRCA community.  I'd be happy to help you find a genetics expert in your area.  Feel free to e-mail me at: sueanddan@att.net. 

Also I strongly recommend checking out the FORCE website.  FORCE is devoted to hereditary breast and ovarian cancer.  You can view it at:

http://www.facingourrisk.org

Hugs and love,

Sue

Hi Kerry,

I'm so sorry about your results.  I carry a BRCA 2 mutation.  Please also check out the website for FORCE at: http://www.facingourrisk.org which is devoted to hereditary breast and ovarian cancer.  Many of the women there have had to make decisions about what to do about their test results.

Regarding decision-making, in a few short weeks (May 16-17) FORCE is holding the only national annual conference specifically for women affected by hereditary breast and ovarian cancer.  You can learn more at: http://www.facingourrisk.org/conference.

Please know that you are not alone.  If you'd like to chat feel free to e-mail me at: sueanddan@att.net.

By the way, I did have cancer and I'm an 11 year survivor.  Many of the women on FORCE have had cancer but many are high-risk by virtue of their family history or genetic status.

Hugs and love,

Sue

Dear Roadrunner,

Actually this is a somewhat complicated question and unfortunately the answer is not straightforward.  Actually some of the above answers don't tell the entire story.  FORCE: Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/) in collaboration with the National Society of Genetic Counselors produced a brochure about Genetic Information, Privacy, and Discrimination which you can view on line or order for free at:  http://www.facingourrisk.org/publications/brochures.html

I want to start by emphasizing that there have not been any documented cases of genetic discrimination in health insurance based on a BRCA test.  Also, these is a federal law called HIPAA that offers some protection against discrimination but HIPAA does have loop-holes which is why FORCE and other nonprofit organizations belong to the Coalition for Genetic Fairness to try to pass comprehensive federal laws against genetic discrimination. In addition most (but not all) states have further laws which protect against genetic discrimination.  But the laws vary by state.  This is one of the reasons why it is good to consult with a genetic expert in your area because most know the state laws and whether or not they have loopholes.

Currently it is not illegal for insurance companies to ask if you have had genetic testing.  And although it is illegal for GROUP insurance companies to discriminate against an individual with a genetic predisposition to disease, it is not illegal for them to discriminate against the entire group (although in most cases that wouldn't be in their best interest).  Again it's complicated and let me restate that there has not been a documented case of discrimination based on BRCA testing.

If you have already had cancer, then you already have a pre-existing condition that likely would eclipse any potential discrimination based on a BRCA test.  If you haven't had cancer, that's a different thing entirely. Either way I recommend speaking with a genetics expert (and make sure they are qualified and well-educated in cancer genetics, not just oncology).  For those who want to understand this more, I'd be happy to refer you to further resources including where to find a genetics expert and where you can find your state laws on genetic discrimination.

One other thing, unlike health insurance, in the area of life insurance there are very few protections (some states have some laws that are protective) against insurance discrimination.  Some health care providers will recommend that people get their life insurance in place prior to having genetic testing.

One other thing, I personally think it's critical to weigh the very real risk of cancer against the hypothetical risk of insurance discrimination before deciding not to have genetic testing.  If paying out of pocket is an option, that's great, but if it's not, I'd hate for someone to forego genetic testing purely due to the fear of genetic discrimination.  Especially someone with a strong family history: the insurance companies already use family history as part of their input in underwriting people.

Please please talk with a genetics expert to get the latest and most up-to-date information on this. 

Feel free to e-mail me at:  sueanddan@att.net if you'd like to chat more or if you still have questions.

Warm regards,

Sue

Dear Friends,
I'm pleased and excited to announce that on-line registration is now available for the 2008 Joining FORCEs Conference! FORCE is an organization devoted to those with BRCA mutations or hereditary cancer risk. Our 2007 conference had over 350 attendees from around the world, who attended to hear the latest information about hereditary breast and ovarian cancer from world-reknowned experts.

For 2008, our conference will be held May 16-17 (Friday/Saturday) in Tampa Florida. The conference sessions are geared towards topics of interest to our community. This is a one-of-a-kind opportunity to make friends, get support, network, and listen to the top experts speak about hereditary cancer. Space is limited so register early. People who register before March 1, will receive a $30 discount.

Here is a link to the agenda page/registration:

http://guest.cvent.com/EVENTS/Info/Agenda.aspx?e=580d224b-fe7c-44b4-ad21-ad7822da7277 

Hope to see you in Tampa!
Warm regards,
Sue