So You Think You May be BRCA Positive by A.J. Wright
Today's writing will be completed by AJ, the middle daughter.
I am pretty open about my journey. It's been a rough one. It started before I was born, included people I'm not blood related with, and will continue for years to come. And because of my openness, I've been asked by many people about the BRCA test itself. Many people are afraid and confused by it in general. Also, there are so many lies out there, some of which are being passed on by members of the medical community, that it's hard to even navigate your own thoughts on it all. So I'm hoping to give some facts that will help you if you're questioning this.
The BRCA Mutation Can ABSOLUTELY be Passed on by Males
I'll say it another way: the mutation is NOT linked to the X or Y chromosome in any way. This one is actually pretty infuriating for me because, as you've seen before, my DAD is the one that gave me my gene. My mom's test was negative. So there's no chance that I am "confused." I say it this way because I was once called that by a mammogram technician when I explained my BRCA history. She kept insisting that my dad couldn't have given it to me and my sisters; that my mom must be BRCA positive. What's more, the chances of it being passed on by a woman or man is entirely equal. In other words, my dad's brothers and sisters all have the same chances of being BRCA positive as he had. His sisters aren't more likely than his brothers. For my sisters and I, it was 50%. If my mom was positive and my dad was negative, it would've still been 50%.
No Race or Ethnicity is Immune
Along with the false belief that BRCA only effects women, there's also a strong belief out there that it only effect Caucasians. While there is a strong link between BRCA and Ashkenazi Jewish families, that doesn't eliminate anyone who doesn't look a certain way. Unfortunately, like above, the medical community is actually less likely to check the BRCA mutation in people of color. We all need to be discussing genetically-linked cancers more.
BRCA stands for BReast CAncer. It's a misnomer. Breast Cancer is only 1 of many cancers that chances are increased by having the mutation. There's also Ovarian Cancer, Testicular Cancer, Penile Cancer, Prostate Cancer, Melanoma, Pancreatic Cancer, and Ocular Melanoma to watch out for. Everyone, and I mean everyone, should be talking to your doctors about any family history of cancer and updating the list on the regular. Remember that BRCA isn't the only gene mutation linked to increased cancer risks, so you may have to make a plan for your family's history, even if it doesn't match the list above.
Another huge red flag is getting cancers young. For example, Breast Cancer is more likely to affect a post-menopausal woman than a woman of childbearing age. Prostate cancer often effects the elderly, and rarely the young. Be sure to mention this to your doctor if you have anyone blood related who had cancers at an unusual age.
The third red flag is if you have a man in your family that had breast cancer. Yes, men can and do get breast cancer. It's just rare, and even more rare if you're BRCA negative. This was the way the Knowles, Beyonce's family, learned of their mutation.
I am also hearing more and more about adopted people, women mostly, who are doing BRCA tests just in case. If you don't know your family history for whatever reason, you may still want to consider having a conversation with your doctor about genetic testing in general.
Not Everyone Carrying the BRCA Mutation Gets Cancer
"I would've gotten BRCA tested, but my Grandma/Grandpa, Great Aunts, Great Uncles, Aunts, and Uncles all had cancer, but my dad/mom didn't, so I'm safe." I've had people tell me something similar to this before and, worse yet, one person told me that their doctor wouldn't test them for that reason. Remember that the mutation increases your chances of certain cancers, not guarantees it. It's entirely possible that a person could've had the mutation in them their whole life, lived to an old age, and somehow never had cancer. It's unlikely, not impossible. There's also a chance that a BRCA carrier would've had cancer if they had lived longer, but something else took their life first. And, if I'm going to continue to be honest and frank, there is also a chance that there is cancer present, but it's just not known. I debated on mentioning any of this because it all seems so insensitive, but pushing all of us to be advocates for ourselves and our health sometimes involves uncomfortable, maybe even hurtful, statements. After all, we are talking about cancer here.
The Testing Process
There are thousands of BRCA positive people on the planet, which means there are thousands of unique stories of how they found their BRCA positive status. So, for now, here are some key points for those of you who are thinking of getting BRCA tested.
If you have a family member who you know is BRCA positive, it would be great if you can get a copy if their results. Specifically, the code assigned to your specific variant. This will make the process much smoother. If you don't have it, it's still good to have a discussion with your doctor about why you feel the testing is necessary and he or she can point to next steps.
The results are found at certain labs. Because of this, any doctor can order the test. Certain doctors are more knowledgeable of the process, however, so you may find it easier to go with them. For me, I had it done through my gynecologist. My sister had it done with her oncologist and my parents did the same. Your General Physician is almost always a good starting point. If you have the code, the doctor can check exactly what labs check for that particular mutation and it'll save everyone time, energy, and money.
The testing is the easiest one I've ever gotten. I just had to spit in a test tube. Honestly, the hardest part was being told I couldn't drink for the 2 hours prior to the spit, which sent my body into instant, "I'm dying of thirst," overkill. Others, like the rest of my family, do a blood draw. Either way, it's fast with minimal or no pain.
The one thing I will tell you is that if you're thinking of going with 23andme as your one and only tester, a negative through them really doesn't mean much. A positive means positive, though. This is because they only test for certain variants that are most likely to be carried by people of Jewish decent, but, as you know, they are not the only ones effected.
With Knowledge of These Facts, There are Important Things to Consider
There are many false beliefs and lies being spread in regards to genetically-linked cancers all the time. The internet is great at twisting everything to fit its needs. For example, there was a study published in The Lancet Oncology, in which they compared the death rates of young BRCA positive British women and BRCA negative who had breast cancer. It was found that their BRCA status didn't effect the results; the chances of dying from the cancer was the same for both groups. After the study was published, many people wrote articles about how preventative mastectomies weren't necessary because, they said, you'd still die. This study, however, wasn't looking at those who had preventative mastectomies. It was only looking at those already effected by cancer. Because it says they were BRCA tested upon recruitment, I'd assume that most, if not all, didn't know if they were BRCA positive prior to the cancer diagnosis. Meaning they probably weren't doing any screeners or surgeries to help their chances, either. The point with all this is this: When you want the truth, read the actual published study, not the biased article that adds whatever it wants to it.
Also, you will have to be an advocate for yourself from the moment you think you're BRCA positive on. I once had to call my insurance company on my cell to have them state explicitly that my mammogram would be covered before the technician would do it. If you know you're BRCA positive, finding a team of doctors to journey with can be challenging. I had a horrible experience with a plastic surgeon once and went with a different one, who was AMAZING. You'll find yourself hearing no when expecting a yes. You may even have paperwork where you find yourself writing in the margins because they left no space for listing cancers effecting the men in your family. Don't give up. You and your health are worth it.
It's so unfortunate there is so much ignorance wrapped around this mutation. It's even more unfortunate that this ignorance has caused issues for many of us. Hopefully, this article will help you see some hope in how much more knowledge out there than ever before if we know where to look.