Members Share Their Genetic Testing Stories

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Many people decide to learn whether or not they have an abnormal gene that is linked to higher breast cancer risk. Three of the most well-known abnormal genes are BRCA1, BRCA2, and PALB2. Women who inherit a mutation, or abnormal change, in any of these genes — from their mothers or their fathers — have a much higher-than-average risk of developing breast cancer and ovarian cancer. Men with these mutations have an increased risk of breast cancer, especially if the BRCA2 gene is affected, and possibly of prostate cancer. Many inherited cases of breast cancer have been associated with these three genes. Abnormal BRCA1, BRCA2, and PALB2 genes may account for up to 10% of all breast cancers, or 1 out of every 10 cases.

Most people who develop breast cancer have no family history of the disease. However, when a strong family history of breast and/or ovarian cancer is present, there may be reason to believe that a person has inherited an abnormal gene linked to increased risk of breast cancer. Some people choose to undergo genetic testing to find out. Members of our Community share their stories about deciding to have genetic testing done and how it has affected them.

614

"I found out that I have a genetic mutation that has not been researched yet so it is called a variable of unknown significance.... Knowing that I have a genetic mutation but not knowing anything else about the mutation is very stressful and anxiety-provoking." Read 614's story...


bc31

"Instead of making me scared of the possibility of developing other cancers, I left feeling empowered that now I have more people looking out for me and tools in place to monitor my health." Read Bc31's story...


pamelakay

"After the DCIS diagnosis, genetic testing was recommended and I was floored to discover I am BRCA2 positive." Read cajunqueen15's story...


pamelakay

"I believe my story is rather interesting. I was in search of finding out whether my grandfather was really my grandfather. He apparently said to my mom's sister on his dying bed that he wasn't sure if my mom was his biological daughter!" Read Chamomile's story...


chisandy

"Do I resent having had to go through all this worry for the 2 weeks it took to get my results? Not at all. Knowledge is power, either way it turns out." Read ChiSandy's story...


cnaviar

"I am a 45-year-old male. I had my BRCA2 test in December and am positive unfortunately. A couple years ago, one of my cousins was diagnosed with male breast cancer and had the test done and was positive." Read CNaivar's story...


pamelakay

"When I was given my genetic testing results, my oncologist and genetic counselor enthusiastically congratulated me on my negative results. But before I could even take a breath and enjoy that moment, they said, however, you are still at increased risk because of family history." Read Djabi53's story...

pamelakay

"From the minute I found out I had breast cancer, 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 breast cancer, and I had recently lost my younger sister to uterine cancer." Read exbrnxgrl's story...


jkbrca2

"After my mother's second breast cancer diagnosis, her oncologist suggested I test for the BRCA gene. But that was prior to the changes to health insurance, so I didn't. After that improved, and I had my son in 2011, we decided it would be good to know if this mutation was in our bloodline." Read jkbrca2's story...


larkspur

"Because my mother and her sister had both developed breast cancer (after menopause) and because I'm Ashkenazi Jewish on that side of the family, my breast surgeon referred me for genetic testing, a move seconded by my gynecologist -- both women." Read Larkspur's story...


pamelakay

"All of my maternal aunts (two) and my mother had breast cancer and later died. I had my mother bank her blood in case another gene mutation was discovered (she did not have BRCA). Her blood tested positive for the NBN mutation." Read Linny50S's story...


lovinggrouches

"They did genetic testing and found unknown variant of PALB2. I have since found out that I have 5 females on my mom's side of the family that had breast cancer and they all survived it, but none of them were real young when they developed it." Read Lovinggrouches's story...


luckyduck

"I have not made decisions about what I will do just yet; however, I do feel like bilateral mastectomy and oophorectomy are in my future. It's a question of when, not if." Read LuckyDuck7's story...


pamelakay

"Ask for genetic counseling and ask if genetic testing is needed. If you are positive, ask for treatment recommendations. Being positive for a genetic mutation is not a death sentence but an opportunity. You have options..." Read Mominator's story...


pamelakay

"I did believe, prior to the results, that there had to be a genetic component, since statistically the amount of cancer in my family was out of the norm. I remain stunned that everything was negative and firmly believe that something will be found in the future." Read movingsoccermom's story...


mustlovepoodles

"Pay attention to your family tree. Talk to your elders about cancer. One of the things that I found frustrating is that some of the older women in the family never spoke about their cancer, other than to say it was 'female cancer,' whatever that is." Read mustlovepoodles's story...


pamelakay

"My OB/GYN has recommended that I test for the BRCA mutation for several years but I always put it on the back burner claiming it would affect my insurance or not be covered, etc. The truth is I'm 45 and my mother and sister both had breast cancer in their mid 30's so I felt I had dodged a bullet and couldn't be positive." Read Previvor's story...


queen-celeste

"It was only after reading up on it that I learned that being Ashkenazi [Jewish] was a risk factor. No doctor, nurse, or mammogram technician had ever suggested or even mentioned genetic testing to me. I don’t think that any of them knew what 'Ashkenazi' is." Read Queen_Celeste's story...


pamelakay

"I am BRCA2 positive. I did not want to act on this, just wanted to be observed, got an MRI done, which is how my breast cancer was found." Read Reckless's story...


robin

"I got a phone call from my doctor stating my results were negative. It was such a relief. I remember my husband taking me out for supper to celebrate. Two days later the phone rang again, it was the nurse asking me to come in the next morning and speak with the doctor." Read Robin31's story...


pamelakay

"Since I was 45 at the time of diagnosis, genetic testing was suggested. There is no breast cancer history in my family, but I did the test anyway and received the news in November that I was BRCA1 positive." Read sushimsg's story...


pamelakay

"I...just received the call from my doctors office that my BRCA2 is positive. With that being said, my grandmother and my great grandmother, and great-great grandmother all had breast cancer." Read tddoucet's story...




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