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.

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.

Sisterhood of the Traveling Pajamas

On my 40th birthday I had an over-the-top party where we served 40 wines and 40 cheeses. Included in the selection of wines were a few that were less than stellar to represent the years that we all have occasionally. You know, the ones that suck dog weenies. As I welcome 2013, I’d like to take a moment and say farewell to the surreal year that was 2012.

Armed with sock monkey pajamas and meditation music I entered the hospital in January 2012 for what would be the first of seven surgeries to permanently reduce my risk of more cancer. While I do not regret my decisions, the process proved far more challenging than anticipated.

Sock monkey jammies.

Sock monkey jammies.

While I was in the hospital I learned my sister had tested positive for the same BRCA1 mutation that caused my early-onset breast cancer at age 36. Her oncologist told her she’d been incredibly lucky to reach her early 50’s free from cancer. Her turn at the same series of surgeries would soon follow. I sent her a care package of items that included these lovely oversized p.j.’s and told her to burn them when she was done. I had no intention of donning them ever again.

Wisely, my sister did not destroy the surgery pajamas.

A few weeks ago, just to cap off the surgical adventures of 2012, my mother decided that her two daughters should not have all the fun and found herself having open heart surgery. Just to scare the crap out of me she developed a blood clot inside her heart and had to return for a second surgery. It was Mom’s turn for the sock monkey pajamas.

Mom models the look for 2012.

Mom models the look for 2012.

In case you are wondering, she is holding a calendar from my vet that includes my cat, the lovely Miss Bubble. I cropped the rest of the photo so she would not shoot me for showing the world her post-surgery beauty.

What is joyful about saying sayonara to 2012 is that all three of us who have worn the pajamas this year are doing quite well. We will move on with our lives and while there will always be some scars, both mental and physical, the events of 2012 are almost in the rear view mirror and that is a very fine feeling indeed. Sadly, there are others in our circle who have not fared as well. We hope that 2013 will be less bumpy for all of those we love and that the sock monkey pajamas can be permanently retired.

 

 

 

 

 

 

 

 

 

 

BRCA Genes, Boob Dreams, Previvors and Survivors.

Seven nights out from the last phase of breast reconstruction surgery, propped up on two pillows to protect my new nips, I had an odd dream. My sister Anne and I were shopping for clothes in a tiny boutique where we had to share a dressing room. As I reached for a beautiful blouse to try on it hit me. I had my old boobs. Yes, the big, unruly triple D’s were back. To make matters worse I had on NO BRA. It used to be I did not even walk around my bedroom without a bra, let alone go out in public without a mile of underwire, hooks and heavy-duty strappage.

2008. Left to right – my niece Emily, me, Anne, Mom. Seated, my other niece Katherine holding her new baby.

Like most dreams, the embarrassing scene floated away without any resolution or meaningful conclusion. While I’m still working on adjusting to the new version of me, I don’t miss those old cancerish troublemaking honkers. Spaghetti straps, camisoles and other skimpy things I could never wear will be in my future.

I am certain my sister floated into that dream because tomorrow it will be her turn for bilateral mastectomy with DIEP flap reconstruction. While I am at the doctor’s office getting the bolster dressings removed, she will be on the table. I ask that you send good karma her way and hope she is spared the complications I experienced. Send some good karma for my Mom too. Two daughters going through this ordeal this year has been difficult for her as well.

My Dad fathered three girls and a boy. His daughter from his first marriage has recurrent ovarian cancer. I had breast cancer at age 36. My sister Anne is the only girl in our generation who can claim the word previvor as her own. What does it mean to be a previvor?  To me it means managing the choices of being at insanely high risk of breast and ovarian cancer. These choices include increased monitoring, chemoprevention or prophylactic surgeries. Make no mistake, all of these choices are difficult and none provide a true fix for the genetic defect.

I’m truly happy my sister Anne has chosen the route of prophylactic surgeries. Right now it is the most effective strategy we BRCA mutants have.

When we were kids it seemed like I went from being flat-chested to very well endowed overnight. My dear sister nick-named me “Saggy Maggy.” Not very nice. Over the years I endured lots of teasing, suggestive comments, leering and worse, all due to my stupid big boobs. Now I’m just looking forward to a future shopping trip with Anne, both of us free from cancer. Of course, she will still have that bubble butt and I will still have no butt at all, so there will still be other things to pick on. Some stuff never changes.

1964. Me and Anne on Halloween.

 

 

 

 

Show Us Kate’s Ta-Ta’s!

Kate Middleton rocks a white bikini

So much fuss over a beautiful, young woman on vacation with her husband doing a bit of topless sunbathing. It’s the paparazzi and our endless fascination with the rich and famous that are the problem here.

No requests from every corner of the world to see another Kate’s breasts. Of course I am talking about the actress Kathy Bates who recently revealed she had a double mastectomy for breast cancer. She’s also an ovarian cancer survivor.

The amazing Kathy Bates

Frankly, I do not want to see either one of these Kate’s boobs. Hell, I don’t even want to look at my own work in progress at the moment. I’m kinda sick of the whole thing.

 

 

Ovarian Cancer: Olympic Champ and the Silent Killer

There is a reason ovarian cancer is called the silent killer. Symptoms don’t appear or are so subtle that diagnosis does not occur until this cancer is advanced and difficult to treat. Early detection tests simply do not exist. Pelvic ultrasound and the blood test for CA-125 are the standard offerings, but they fall so far short of the mark it is pathetic. Research dollars and treatment advances for ovarian cancer lag behind breast cancer, the far more sexy female cancer. As a society we care more about our cleavage than our pelvic organs.

For those with defective BRCA genes, the threat of both breast and ovarian cancer is high. As I’ve been recovering from surgery to reduce my risk of ovarian cancer I’ve been glued to the TV coverage of the Olympics. I’m guilty of watching sports I did not know even existed, but always look forward to the big ones like women’s gymnastics. As I watched the US team take the gold, and then Gabby Douglas win the individual all-around gold, I thought about many of these fearless young women I’ve admired over the years. One such Olympian, Shannon Miller, was a member of the 1996 team dubbed the Magnificent Seven. What you may not know about her is she became an ovarian cancer survivor in 2011.

 

Olympic gymnast Shannon Miller in 1996

If you’d like to read more about Shannon Miller’s experiences please take a few minutes to read this short interview and remember – ovarian cancer can happen to any female, whether they are couch potatoes or the stuff of Olympic legend.

Shannon Miller and her son during treatment in 2011.

 

 

 

Breast Cancer, Ovarian Cancer and no more Spanx

Here’s today’s jumble of thoughts related to ongoing cancer adventures in my world.

A big shout out and good karma for my friend Diana undergoing lumpectomy today. Welcome to the crappy pink ribbon club.

Too busy looking fabulous to let breast cancer get in her way.

A sigh of relief as my relation with ovarian cancer is finally home from the hospital after yet another extensive surgical adventure. There’s nothing like one’s own bed, comfort food and purring kitties to speed the healing process. I am also quite selfishly glad that my ovaries and tubes are no longer around to cause trouble.  To my former parts I quote Monty Python: “I fart in your general direction,” which after two weeks in gut-crushing Spanx is probably dangerous.

Last but not least, I have released myself from the evil of said Spanx now that I’ve hit the two-week post-op mark. Still very sore, bruised and swollen. My midsection looks like the aftermath of a serious bar brawl. Jeans? No way. But for the first time this summer we have a weekend of upper 90 degree temps and I can break out a sundress. I went an entire day with no need to nap yesterday. Baby steps worthy of celebration.