A breast cancer survivor shares her experiences with the BRCA gene.

Friday, August 1, 2008

Why Pursue BRCA Testing

Several books have popped up recently about women who discovered they carried the BRCA gene and their resulting decisions.

One woman in her thirties had a double mastectomy, but held off on a hysterectomy until she had children. The other author decided to do nothing since she felt there were more issues around early menopause, and didn't want to subject herself to all that surgery.

  • I was advised to undergo BRCA testing, since I was diagnosed with breast cancer at 42 years old. Diagnosis at an early age (pre-menopause) is an indicator that you may carry the BRCA gene.
  • BRCA testing is often covered by health insurance, especially if you have already had breast cancer. Or, if you prefer, you can pay for it yourself ($3,000) so that your insurance company doesn't know.
  • NOTE: Myriad Genetics Lab does not report results to your insurance company (it's completely confidential), so the only way this will go on your insurance record is if you have your insurer pay for it.
  • The BRCA gene has implications for other family members. If it's confirmed you carry the gene mutation, then other females in your family may be at risk. The male can be a carrier (my dad passed the gene to me) and may be at risk for early prostate cancer. However, the higher risk for developing cancer is among females.
  • Just because your family carries the gene mutation doesn't mean that you will inherit it. My sister-in-law's mother, aunts and grandmother all carried the BRCA gene and it wasn't passed along to her.
  • Once you are diagnosed with the nightmare of breast cancer and endure all the treatment, you never want to go through that experience again. If you haven't had breast cancer, but are at high risk, you need to think long and hard about keeping yourself at risk.
  • A scarier diagnosis is ovarian cancer since it's extremely hard to detect in early stages and is very aggressive and invasive. In fact, it's most often found when it's hard to effectively treat.
  • I can't say this enough: Because I took immediate action -- even when my doctors thought I had more time before committing to surgery -- they found fallopian cancer in its initial stages (pre-cancerous, non-invasive cells). This was a shock to all, including my surgeons. After this discovery, I was told that had I postponed surgery just 6 months later, I would have been in trouble. It was a miracle I had surgery when I did.
  • Many breast cancer survivors I've talked to who were also diagnosed at an early age have not pursued BRCA testing since they don't know enough about it and don't think it applies to them. However, when I was diagnosed with breast cancer 7 years ago, I was told by medical experts that my cancer was not linked to heredity. Seven years and tons of medical research later, it's a different story. In other words, check it out. Information may have altered since your original diagnosis.
  • What I didn't realize was how significantly reconstruction surgery has developed over the years. I can honestly say that my body looks better now than before surgery. While it's not a recommended diet plan by any means, if you have to go through all the trauma of surgery, this is to assure you that there's a strong chance you'll come out of it reducing your risk of developing cancer AND with a new body as a consolation prize. This may sound shallow in light of cancer and death, but is a real concern among women (to have their body massacred) and why many don't pursue taking action.
All to say, I recommend anyone who thinks they might carry the BRCA gene to talk with their physician. If you haven't had cancer, talk with your gynecologist. If you have had cancer, discuss with your oncologist. It could save your life.


Son Shines Zee 365 said...

Just wanted to say thanks for doing this blog. My mother passed away from breast/brain cancer 1947-1996. My sister and I were both tested and + BRCA 1 gene mutation. She is closer to 40 than I and is have preventative surgeries done this year. I plan to do the same in a few yrs when done having children. Just another fyi to another post, yes, losing a child is something you never get over. In loving memory, Kyla '00-'02

Julie Auton said...

I'm so sorry to hear you lost your mom at such a young age! I have several friends who lost their moms early on because of cancer, and I've watched them over the years navigate through mother's day, Christmas, wedding plans and the birth of their own children without this significant person in their lives. I hope you and your sister can draw on each others' love and support to get you through all of this. Meanwhile, you and your sister will be added to my prayer list. I'm glad you decided to get tested so that you at least you know what you're dealing with!

angela said...

Hi Julie!
I found your site by "googling" BRCA testing and insurance. I lost my Mom to breast cancer a few years ago and she was 45. She lost her Mom to ovarian cancer when her Mom was just 42. I, too, have had some benign issues but have been frightened to get the genetic testing done for fear that it would be positive and I would have to make some radical decisions ( I like my bikinis.) I am 32 and a proud Mommy of a 3 year old daughter and a 3 month old son. I have been on the fence about it for years. So, it looks like you have talked me into having the testing done! Thank you for your frank thoughts and wisdom!

Julie Auton said...

Angela--I know how scary it is facing the possibility of carrying the BRCA gene. "Possibility" is a key word here. You may NOT have the gene after all, which would be an enormous relief instead of worrying about whether you had it or not. And, if you DO have it, you can save your life by taking necessary steps.

I've lived with the "possibility" of cancer recurrence for years, and I can tell you that knowing something for sure is easier to deal with rather than constantly wondering and worrying. So, set your mind at rest by finding out.

And, by the way, I know of a young mother who had a double mastectomy and reconstruction, who liked her body better after all the surgery.
I wish you the best!