BRCA Testing Insights

Thank you for the comments on Tuesday's BRCA post. I appreciate the support, thought-provoking remarks, and especially the personal stories that were shared.

There are so many brave, intelligent, articulate women out there and for each of you, a different take on the topic of genetic testing and preventive surgery.

I find this issue fascinating, perhaps because it was already on my mind when the Angelina Jolie story broke. Or perhaps because it touches so many of our lives and sort of joins us together in a way. We all fear cancer and we all carry the risk of getting cancer. One in the three of us will get some form of it and certainly all of us have had experience with cancer whether personally or with a loved one.

Yesterday I spent a couple of hours taking the online class required to submit my application for BRAC1 and BRAC2 gene testing. The class is followed by a brief test for which I received a certificate that I must mail to San Francisco. My packet is going into the post today.

Informative, insightful, interesting and at times, frightening, the class answered many questions I had about BRCA testing and many that I didn't.

Given enough time, I could write a very lengthy post about all that I learned. Instead I want to tell you a few things that stand out in my mind and that may be of interest to you.

~ First, the BRCA test is not as cut and dry as you might think.

I may test negative for BRCA1 and BRCA2 but that does not mean I don't carry some other gene mutation for hereditary breast and/or ovarian cancer.

There are dozens of other undiscovered genes that cause hereditary breast cancer that are thought to cause between 30 - 70% of all hereditary breast and ovarian cancers. It's entirely possible that there is a third BRCA gene, yet to be detected.

Here I thought I would have my choice of either:

A) Yes, you have the BRCA gene mutation and have an X% of getting breast cancer and a Y% of getting ovarian cancer.

B) No, you don't have the BRCA genes. Your risk is low. It's the same risk that most people have for sporadic breast and ovarian cancers.

These are the real choices:

A) Yes, you have the BRCA gene mutations.

B) No, you don't have the BRCA gene mutations but because of your family history you may have some other gene which would increase your chances for breast and ovarian cancers but we are not capable of identifying them right now.

~ Second, there are other measures that can be taken toward prevention that don't include surgery. MRI scans, chemotherapy and lifestyle changes are a few alternatives to a mastectomy and/or oophorectomy (ovary removal) for those with hereditary risks.

Should I get to the juncture in this process where preventative steps need to be taken, all options will be explored before making a decision. Drastic surgeries are, of course, not to be taken lightly.

~ Third, the hereditary genes for breast cancer and ovarian cancer can be passed down from both of your parents, not just your mother. Of course, this makes sense but I think it's more common to always look at the mother's family history since these cancers are found mainly in women. Your father's family history weighs just as much as your mother's. It's helpful to know as much as you can about both.

~ Lastly, I think it's important for everyone to know about Myriad, the company that administers and carries the patent for the BRCA tests. The patent is the reason they can charge such a high price, about $3500, which in turn makes it too costly for many women to have unless their insurance is willing to pay for it.

And there is a suspicion, brought to my attention by a reader, that the statistics having to do with risks of cancer in those testing positive for BRAC genes are inflated. 

Currently, the Supreme Court is reviewing whether companies such as Myriad can continue to hold a patent for the procedure of taking the genes out of the human body to research. It's an interesting and important case that is worth following. You can read more about it in this article.

Rather than worrying myself needlessly with the unknowns and trying to predict what I would do in every possible situation - which is frankly exhausting -  I am going to actively choose to take things as they happen.

My first step of taking the class is complete. Now I wait up to two weeks for a genetic counselor to contact me regarding an interview. There is no guarantee that I will get the test and there is always a chance that after speaking with the genetic counselor I will decide not to take it. I doubt that will be the case but I cannot rule anything out.

I know this isn't the sort of post you expect to see on The Rich Life but it's an important topic to so many people, including me, that I thought it warranted further exploration.

I plan to be back by the end of the week with a much lighter topic but in the meantime, 

what are your thoughts? 

Does this additional information change your perception of the BRCA test?

BRCA Test Motivation

Today the New York Times ran an op-ed piece written by Angelina Jolie.  In it, she announced that she has had a double mastectomy as a preventive measure against breast cancer, as she has tested positive for the BRCA gene.

The timing of this news could not have come at a more interesting time for me. I am in the middle of deciding between applying for insurance coverage to get a BRCA test or not. In fact, my paperwork showed up in the mail just yesterday.

This is not the first time I have considered being genetically tested for breast cancer. Breast cancer has occurred on both sides of my family. My mother, who was diagnosed at 37-years-old, beat hers and has remained cancer-free since the 1980's. However, my fraternal grandmother did not beat hers and passed away fourteen years ago.

In 2009, I applied to have genetic testing but was denied by my insurance company. Once I changed insurance, I was offered to try again but declined. At that time, I didn't want to know and I had convinced myself there was security in being previously denied. I must not be a strong candidate, right?

If I tested positive for the BRCA gene, then what? The options were frightening for me to consider. I didn't think I could handle making the difficult decisions to either keep or remove my breasts and ovaries. I decided it would be well enough to continue to be diligent with my annual exams.

After my recent yearly mammogram last month and my subsequent visit with a breast specialist to determine whether the lump I felt was something concerning or not (it's not), I finally decided I was ready to apply for the test.

Last week I called the phone number given to me by the breast specialist and requested the necessary paperwork. If I am accepted, my insurance will pay for the test, which runs about $3000.

When the instructions arrived in the mail yesterday I opened it, glanced at it for a moment, then left it on the kitchen island where it still currently sits.

I became scared again and those former feelings of wanting to run away from it resurfaced. I told myself I had more pressing things to do. And besides, I just had a mammogram that turned out clear. The genetic testing could wait.

I am certain the paperwork would have way eventually made its way to the kitchen junk drawer had I not read the op-ed by Angelina Jolie today.

I have admired and respected Ms. Jolie for years for her tireless philanthropic work to help less fortunate people. And I appreciate that in her article she doesn’t sugarcoat the fact that it’s not a short, pain-free, easy process to have a mastectomy with reconstruction. The fact that she was so honest about  that part actually gave me comfort in a way because I believe she can be trusted. And she made me feel that if she can handle it, I can too.

Angelina Jolie went from having an 87% chance of getting breast cancer to 5% chance. Hearing those statistics probably made her decision crystal clear. If I am accepted for BRCA testing, and my results show that I, too, am carrying the BRCA gene, I am certain my decision will be crystal clear as well.

This week I am going to be brave like Angelina and take the first step towards BRCA testing by registering for an online class required as part of the application process.

Angelina Jolie’s purpose in revealing her double mastectomy is to motivate others to get tested for BRCA. Count me as one who has been motivated!

What do you think of Angelina Jolie’s decision?

Have you considered BRCA or similar genetic testing? 

What are you thoughts on drastic preventive surgeries? 

Leopard Maxi for Mother's Day

If you celebrated Mother's Day, how was your weekend? Mine was wonderful!

Saturday evening, the my three stepchildren made me a special dinner. They set a beautiful table, brought me bright orange tulips, gave me two boxes of my favorite sugar-free candies and a dry erase board for my office, and even cleaned up afterwards. I had nothing to do but enjoy myself and relax. My idea of a fantastic Mother's Day!

They also each gave me heart-warming cards which I am keeping on our mantle for awhile so I can read and re-read them whenever I feel like it.

I am abundantly grateful to have three thoughtful, respectful, kind, warm and funny children in my life. My stepkids never fail to let me know how much they love and appreciate me...and the feelings are mutual.

On Mother's Day, it was just the two of us as the kids were spending the day with their mother. My husband wanted to take me out to a winery. I saw an ideal opportunity to wear my new Gap Printed Drapey Maxi Dress in blue leopard print. With the weather in the low 80's, it was the perfect day for it.

Usually I shy away from wearing lots of print at once because I am so very tall (6'2"). I fear I will look like a walking set of drapes wearing prints on both top and bottom. But this dress doesn't seem to give that overly busy effect and I am not sure why. Any guesses?

With my dress, I wore these Michael Kors sandals. I find myself wearing them almost daily. They were such a great find at T.J. Maxx.

With such so much print, I kept the accessories to a minimum. I only wore a watch, a pair of delicate hoops and my Mulberry Bayswater satchel.

The dress was meant to be worn with a drapey neckline.

I will wear it like this one of these days, but I for my day out and about with my husband, I wanted a look a little more sassy and sexy so I pulled the neckline off my shoulders.

We went to one of my favorite wineries in the valley where I live, Imagery Winery. We bought a bottle of White Burgundy, a couple mineral waters, ordered a cheese plate and watched families play bocce ball, picnic and and enjoy the day - lovely and relaxing.

On our way home, we pulled over onto the side of the road to take some photos of a vineyard that happens to still have lots of California Poppies, our state flower, sprinkled amongst the grapevines.

It looked like a good place for an outfit shot!

How do you feel about wearing lots of print at once? 

Please be sure to stop by Not Dead Yet Style to see what everyone is wearing for Visible Monday....

...and remember that How I Wear My: Floral posts on June 4th. Please send in a photo of you wearing something floral to me or Jill of Everything Just So by June 3rd to be featured!