BRCA Surgeries: 1 Year Later

20130125-100022.jpg
In two days time it will be one year since my initial mastectomy/reconstruction surgery. What a year. And the adventure continues. A visit to the plastic surgeon is on the calendar in a few days to check the new nips and give me (hopefully) the go-ahead to schedule tattooing. Not everyone chooses nipple reconstruction or the tattoos that make the nips look flesh colored. I cannot say I am looking forward to the needle treatment but being really, truly all done will be marvelous.

In the mean time, it is tax season and around here that coincides with retirement planning. It is very nice to worry more about 401k stuff than boobs.

Allyn Rose: Mutant enters Miss America Pageant

20130115-073240.jpg

Allyn Rose
Photo Credit: Courtesy of The Hollywood Gossip

Miss America contestant Allyn Rose, a 24-year old college graduate with movie star looks is so much more than another pretty face. Although she did not make the cut to be a Miss America pageant finalist, her DNA made news around the world. Morning talk shows and tabloids gobbled up her story, eager to label her health dilemma and decisions as controversial. Strong opinions, even hate mail, have followed Ms. Rose in the weeks since she announced her intention to have a prophylactic bilateral mastectomy.

Welcome, Allyn Rose, to the path that anyone with a BRCA1 or BRCA2 genetic mutation knows so well. Our mutations are more famous than your very rare Wiskott-Aldrich syndrome but hey, I am certain those with Cowden’s, Li-Fraumeni, Peutz-Jegher or the host of other known hereditary genetic defects that predispose one to breast cancer will welcome you into the mutant fold. We need you in a big way.

Why do those in the hereditary cancer community need Allyn Rose? It’s simple. There is work to be done to educate people everywhere about the risks and choices involved in familial cancer. Allyn Rose has stepped up to the plate and said to the world she wants to make preventative health care her mission. I applaud her efforts on behalf of those everywhere grappling with the same difficult decisions her family faces.

Thank you Allyn Rose. I am certain your Mom, who died from breast cancer at age 50, and the many generations of women in your family who suffered the same fate, would be so very proud of you.

BRCA Gene Defects and Breast Cancer: Doing the Math

earth

“You cannot come home because the math is hard.”

This is what my Mom said to me in the first grade when I wanted to leave school early one day. Math was giving me a bellyache. Today, a different kind of number problem troubles my little gray cells. Statistics. To be specific, breast cancer statistics.

The American Cancer Society’s 2012 estimates for the number of predicted cases of breast cancer in the United States for the year that just ended are as follows:

  • About 226,870 new cases of invasive breast cancer will be diagnosed in women.
  • About 63,300 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 39,510 women will die from breast cancer

Hereditary breast cancer represents only 5% to 10% of new cancers diagnosed each year. When I get out my calculator (yes, I have to) and do the math this means 290,170 American women will have either been given a diagnosis of DCIS or invasive cancer and up to 29,170 of them will have that cancer as the result of faulty bits in their DNA. There are many genetic mutations that can elevate breast cancer risk, but the most common ones are the BRCA1 and BRCA2 mutations.

These are just the numbers for the ladies, mind you. Don’t forget men get breast cancer too. And do not even get me started on the ovarian cancer cases caused by BRCA defects. Or other cancers that occur at higher rates in BRCA-positive folks. The math will overwhelm my pea brain.

I have been thinking about those 29,170 women who are in some stage of grappling with a new diagnosis of hereditary breast cancer in the past year. The thing that bugs me is that only a portion of them know their cancer is caused by a gene defect. Thousands of women will make important decisions about treatment and follow-up without the knowledge needed to make informed choices.

Why?

The BRCA (BReast CAncer) genes we call BRCA1 and BRCA2 were discovered fewer than twenty years ago. Testing for the full sequence of possible defects is expensive, limiting access to the test for some. There are other barriers that include lack of education and information on the part of patients, physicians and insurance companies.

I began writing about my experiences as a BRCA1 breast cancer survivor in 2012 as I went through numerous surgeries to reduce my risk for more cancer. Now that I am in the so-called “all done club,” at least as far as surgeries go, I plan to spend some time in 2013 tackling the larger issues.

Writing about my experiences has been good for my personal recovery from a year filled with trauma. It would be even more meaningful if this blog could help others. Visitors from more than 110 countries visited this site in 2012. I hope to engage, inform and entertain (I like to laugh) a wider audience in 2013.

Thank you to everyone who stopped by last year. Welcome to all those who I have yet to meet, like the 29,170 American women diagnosed in 2012 with breast cancer who may or may not know that they are part of an important minority: BRCA breast cancer survivors. Welcome also to those who are at risk for cancer, which means pretty much everyone on the face of this beautiful blue-green ball hurtling through space that we call Earth.