The Angelina Effect: A Few More Thoughts

Only a short time after Angelina Jolie’s bombshell op-ed in the New York Times appeared, she lost her aunt to breast cancer at age 61. Her mother died from ovarian cancer at age 57. All three women in Angelina Jolie’s family have a defective BRCA1 gene, just like three of the women in my family. We know her pain.

In the comments, interviews and editorials since Ms. Jolie announced her choice to undergo what my docs simply call “the BRCA surgeries” there have been many who do not agree that lopping off healthy body parts to reduce cancer risk is a good thing. Of course it isn’t. It is an unfortunate reality that preventative surgery is the best of the limited weapons at the disposal of high risk patients. What really sucks is that all the choices are awful.

As I approach the fifteen year mark as a breast cancer survivor, I am profoundly grateful just to be here to complain about these issues. My relative with ovarian cancer has put up one hell of a fight for the last five years. I doubt she has five more. Many of the experts I have heard in the Angelina uproar say that those BRCA positive patients who witness close relatives suffer with cancer are more likely to choose prophylactic measures. No shit. Cancer is brutal and very, very ugly. No one likes to talk about that. Think losing your breasts is bad? Try the monster that is Stage IV breast cancer or advanced ovarian cancer on for size.

That is all for today’s rant.

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My Dad as a young man. He died of leukemia in 2004.

The Angie Gene

Talk about a PR windfall. Angelina Jolie, mega-movie star, humanitarian, celebrity mom and fiancée of an equally famous man has suddenly become the face of the BRCA gene world. And what a gorgeous face it is.

This is very good news. Of course it is pretty crappy news for Ms. Jolie and her family. The same crappy news women all over the world deal with each day. Difficult decisions, uncertainty and major life upheaval come with the knowledge of what it means to have this genetic disorder. I am sorry for Angie, but very glad she chose to share her story and I thank her for doing so in such a public way.

The airwaves are filled with Angelina and people everywhere are discussing her family history, cancer risk, choices and treatments. For all those people I have heard criticize or stand in judgement I would politely like to remind you that she did not have to say one word about this to anyone, ever. It could have remained private. Instead, she chose to tell the world her story.

Thank you Angelina Jolie for speaking out. It matters to women like me who face the thorny array of problems that come with being a BRCA mutant. It matters even more to all those who did not even have a clue this genetic order existed until you spoke up. Your candor will save lives.

The Angie gene. I have it too. And I will keep telling my story just as often as anyone will listen. I hope Angelina Jolie will do the same.

BRCA Gene Defects and Breast Cancer: Doing the Math

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“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.

BRCA testing: The next generation, Adventures in cardiac surgery

So, yesterday while we waited for my Mom to have her cardiac catheterization procedure I kept her entertained with my new iPad. She tolerates computers but is not a tech aficionado. An email popped up and I stood next to her bed so she could see the good news.

My oldest niece got her BRCA test results back yesterday. She is negative! Of course this does not mean that she can forget about cancer since both sides of her family tree are full of it, but it is very good news indeed. A bright spot in a long day.

Tired and grimy after a very long overnight series of flights, I waited while the docs trolled around inside Mom’s heart looking at her arteries and valves. Afterward the doctor told me she is in excellent shape, other than her leaky mitral valve. He said “Once we repair her mitral valve she will be heading for triple digits.” More good news.

In about an hour surgery will begin. So far I am very pleased with the nice folks at Rochester General. I had a wicked good Greek salad for lunch, got free coffee, a place to park my luggage, a helpful series of people who kept me from getting lost and the hospital security guy drove me to my hotel. I am amazed.

National Previvor Day, HBOC Week and My Charmed Life

At the ripe old age of 8, pennies saved, I bought a special treat at summer camp. A charm bracelet. More than 40 years later I still have it despite numerous cross-country moves and a tendency toward getting rid of stuff. Packrat is not a word anyone would use to describe me. I do not know why I have held on to this fragment of childhood.

1970 Camp Wynakee charm bracelet

A couple of days ago I bought a charm for the first time since 1970. It cost quite a bit more than the last time I made such a purchase. Part of the proceeds from the sale of this charm went to support the only national non-profit organization dedicated to helping people who face hereditary breast and ovarian cancer. FORCE and its resources on both the local and national level have been indispensable for me and my BRCA1-positive family.

Silpada charm “Red Hot Love”

I don’t even own a charm bracelet, besides my tarnished vintage summer camp beauty. What possessed me to buy this pretty bauble? It seemed appropriate. Not only because it helps support a fine organization, but it is a reminder of one of the unexpected rewards that have been part of my personal journey this year as I’ve had one surgery after another to keep cancer from returning. Love, in so many forms has come my way from family, friends and perfect strangers. It’s been wonderful and humbling.

During the midst of a long and difficult hospital stay I learned my sister Anne had tested positive for the family mutation. Among the three girls in my immediate family, she is the only previvor. Wednesday is National Previvor Day. Yesterday, I sent my sister a care package filled with things she will find helpful during her own upcoming surgeries. Some love went in that package too.

 

 

 

BRCA and the Men in My Family

Christmas, 1976. All of the boys on my Dad’s side of the family posed for this snapshot, including Henry the dog:

The Pritchard Men

Only one of these men remains alive today. The rest all died from cancer. On the far left, my Dad’s brother, a brilliant engineer and entrepreneur, died from lung cancer. Uncle Bill was in his late 70’s and a reformed smoker. On the far right, is cousin Hugh, Uncle Bill’s son. He died at age 51 from cancer of the bile duct. He had complex health problems including diabetes. In the back is my Dad who died of leukemia in his late seventies. Leukemia and lung cancer also killed my Dad’s father and mother. In the middle, the young boy and lone male left in my family is my brother John at age 12.

My brother, now age 48, does not want to know if he carries a defective BRCA1 gene. Some of my uncle’s children have chosen to test for the gene and some have not. It is a personal decision. Not everyone wants to peek inside their own DNA. I get it.

I am not sorry that I chose to test. Nor do I regret the massive amount of surgery I’ve endured in order to thwart more cancer. Of the seven children born to my Dad and his brother, 3 are either cancer survivors or have died from cancer. Of these same seven children that comprise my generation, only two had kids of their own.

National Hereditary Breast and Ovarian Cancer Week is September 23-30th. I hope the next generation of my shrinking family knows their history. None of the four girls who are members of that next generation have the last name of Pritchard, but they have some Pritchard genes. My fingers are crossed they are not the crummy ones.

Farewell to Summer

The calendar says there are another four weeks left until the start of the fall season, but I beg to differ. Summer has departed. The sunlight has changed in intensity and duration. Cooler temperatures have arrived. This morning the heat came on in our house. If you live in the Pacific Northwest, it is time to get out and enjoy these last precious golden days before the rainy gray arrives.

It’s been an odd summer. Yet another rough patch in a rather dreadful year in the Asbell household. It began last autumn with BRCA1 test results, continued with the death of my father-in-law five days before Christmas and then came the January surgical hell followed by the July surgery purgatory. In between more dreadful cancer crap happened to members of my family and to friends. Still, there were some delightful experiences and special moments. This is the way life works.

At the start of summer in blistering heat, I watched my youngest niece graduate from high school.

My beautiful nieces and great-niece celebrating graduation day.

The bookend to summer came two weeks after surgery #6 for this year. I sat with old friends poolside, sipped fine wine and supped on grilled steak. While he sampled a 1996 Turley Black Sears Zin, Jim decided the Black Sears vineyard would be a fitting place to spread his ashes when he’s gone. This led to a lively talk about the kind of stuff that only old geezers discuss, namely death and bucket lists. Morose? No way. It was funny and revealing. I continue to learn things about old friends, my husband and myself. And where did the group decide that my ashes should go? Autzen Stadium. Yes, that’s right. I will be one with my Ducks football team. They were kidding, of course. Then again…why not? Summer is over rated. I love autumn. GO DUCKS!!!

Hot summer night pool party.