This BRCA forum is a REALLY good idea.

I agree it's a good idea. There is also an entire website dedicated to this called FORCE ... facing our risk of cancer empowered....lots of great support and information there. Many large cities now also have BRCA support groups as well.

Regina, I guess you mean doing a pro mx by taking off both breasts with no cancer.  I had my left breast removed with no cancer along with the right breast which did have IDC.  Had 4 rounds of chemo, TE's, oopheretomy, exchange surgery and one last surgery coming up.  I had BRAC done after chemo was over.  BRAC 2 +.  My mom died of BC and her mother had BC.  My niece, 34 years old, just was dx with BC and had a bmx.  She will need 30 rad treatments. 

My sister and her daughters have not done BRAC.  They have nothing to compare what we have been through to.  I have had to think about why I did not do BRAC testing before dx and I couldn't wrap my head around what I would do if it were positive.  I am glad it is available now.

I am finishing my chemo this week and can move forward with my life.  I am BRCA1+ and was diagnosed at age 47.  I did not consider myself a risk for BC, however, in talking with my family I realized that there were probably several "hidden" cancers in my family in the late 50s when women didn't talk about personal stuff like this.  My sister who just turned 40 also tested positive and is dealing with the surveillance world.

 I think this forum is great.  I have gone to the FORCE site but it is not nearly as interactive as this site.

I was recently diagnosed with BC. I'm 28, and no one in my family has had cancer before. My breast surgeon wants me to have genetic testing before we decide on surgery options. I do not feel comfortable waiting for the test result, and I feel that it's a low chance that I have the gene. What do you recommend?

I have the BRCA1 gene.  I agree.  This forum is a great idea.  The FORCE website is helpful, but it is not as interactive and easy to navigate. 

To test or not to test:  In the late 1990's, I met with a genetic counselor but decided not to test because I was so young (mid thirties) and was told a positive result could have future implications with insurance, and possibly employment.  I learned last year that a new act was signed into law to protect us from such circumstances (link below).  Had there been this protection all along, I would have known my status a full decade before developing cancer and without a doubt, would have chosen prophylactic, bilateral mastectomy,and oophorectomy (and therefore would have never had cancer, chemo, etc.).  By the way, only one person voted against this law and I have to wonder why he or she would do that.  I will now watch more closely how our elected leaders and representatives handle such matters.

http://www.genome.gov/24519851

ElaineD - I am so sorry to hear of your diagnosis.  It sounds like you took all the right precautions and I am sure you went through many tough times with each recovery.  Did you also have your ovaries removed?  Or, is yours breast cancer?  Just trying to understand what type of cancer you developed.  I do hope you continue to remain hopeful as there are so many new developments in medicine.

ElaineD

Sorry to hear about your dx. Did you do the Prophilactic mast before developed cancer in that same breast or the stage IV was from the breast that did not do the prophilactic surgery?

I had two primary BC two years apart 10 and 12 years ago, BRCA1+, bilateral mastectomy, bilateral salpingo oophorectomy, TRAM flap reconstruction.  I am having a difficult time trying to pin down what the standard of care is for long-term survivors.  The best suggestion I have heard is yearly MRI for ten years and then what?  I am now 10 years out.  Now what?  What do your oncologists or genetic counselors suggest?

I was diagnosed with BC at 60 and just finished my last radiation treatment, which followed lumpectomy and chemotherapy.  It was estrogen positive.  The oncologist said she didn't think she would recommend my being tested for brca because she didn't think I fit the profile.  But my daughter and niece would like me to be tested so they would know if they might need to have earlier surveillance for BC.  My sister was diagnosed with ductal carcinoma in situ--inside the ducts--and was estrogen positive--at 40.  My mother was then diagnosed at 86 with calcifications and given a mastectomy. Hers was estrogen positive, too.  I probably might ask for the brca test in a while, but I wondered if people diagnosed at so many different ages would be suggestive of sharing one of the brca genes, or would there need to be more similarities in their cases?

Rockstar: I had my BRCA test done via saliva.  It's newer.  Here is a website for more info:  www.myriadtests.com 

Tulips:  I thought if you had 2 close relatives w/breast &/or ovarian Ca you were eligible for ins to cover the BRCA test.  In my family my grandmother died of BC in her 50s.  2 other BRCA(+) relatives had early stage ovarian Ca, one aunt has bladder Ca (that might not be BRCA related), and then there's me dxed w/BC in my 40s.   

Karmil

My HMO, Kaiser Permanente, takes an extensive family medical history and requires you to take an on line class as well as speak to a genetic counselor before determining if you are eligible for BRCA testing. They still use the blood test, though Myriad Genetics in Utah, is the company that holds the patent on blood and saliva testing. Many factors, such as type of cancer, age at dx and ethnicity go into determining if one is eligible for testing. Don't know if different insurers have different parameters. Hope to have my results back in 2-3 weeks. Caryn

Hi Rockstar and everyone...In April, 2012, I had the saliva test/swish test, sent to Myriad, and was diagnosed with BRCA2+.  My paternal grandmother is the earliest family member to have breast cancer in her late 40's or early 50's. My father died of lung cancer and his sister of esophageal cancer.  My sister was tested via blood test by Myriad labs, too, but fortunately, she was negative.  My daughter (30) and son (34) will be getting tested, and, if positive for BRCA2 will follow with genetic counseling, and hopefully plan around having a family if necessary.  So far, I have had a bilateral mastectomy with expanders and just started my first of 4 rounds of t/c chemo yesterday.   So far, so good...surgery recuperation was a bit achy at times, but manageable...just needed to listen to my body and slow down and rest and take Tylenol prn.  I did return to work and took it slow as needed.  Today had my first neulasta injection...waiting to see if any side effects present themselves...otherwise took a 4 hr nap today and generally following recommendations as to meds to prevent nausea.

thanks for sharing.