BRCA1 and BRCA2 Risk Stats Simplified

I accepted long ago that my brain is wired for language, not numbers. All forms of math befuddle this word nerd. In the quest for knowledge about cancer risk, information in the form of numbers cannot be avoided. If those annoying stats were not so central to the BRCA decision-making process I’d vote to toss them out the window. In college I learned that statistics do not lie, but people do. Statistical data can be slippery and open to interpretation.

Here is a breast cancer statistic that is commonly repeated:

1 in 8 women will get breast cancer in their lifetime. What does that statement really mean? Breast cancer risk varies greatly throughout the course of one’s life according to the National Cancer Institute.

A woman’s chance of being diagnosed with breast cancer is:

from age 30 through age 39 . . . . . . 0.43 percent (often expressed as “1 in 233”)

from age 40 through age 49 . . . . . . 1.45 percent (often expressed as “1 in 69”)

from age 50 through age 59 . . . . . . 2.38 percent (often expressed as “1 in 42”)

from age 60 through age 69 . . . . . . 3.45 percent (often expressed as “1 in 29”)

Source: cancer.gov web site

Do you see 1 in 8 here anywhere? Nope. The one in eight number comes from looking at all women in the population up to age 80. This is an example of absolute risk. Let’s save relative risk for another day before I fall asleep writing this.

When it comes to absolute risk for BRCA positive people, the numbers that get tossed around can vary widely. They are often shown as a range. Keep in mind genetically inherited BRCA cancers strike differently in one family versus another. Some families will get more cancer than others and we do not know why this is so. Your family might fall at the low end of the range. Or not. This is part of why genetic counseling is a critical part of the BRCA learning curve. Those genetic counselor geeks know how to analyze numbers that are applicable to your situation.

One of the better examples of showing BRCA cancer risk as an easily understood graphic that I’ve seen comes from the new Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania.

For this math loser, here is data I can digest and easily repeat to others. Why? Everyone understands basic percentages. In the general population, roughly 13 women out of 100 will get breast cancer at some point in their lives if they live to be 80 years old. For every 100 women who have a BRCA1 mutation like me, between 60 and 80 of them will get breast cancer if they live to age 80. Numbers like these matter when one is trying to decide whether to chop off precious body parts.

I will place these well organized numbers in my KISS (Keep It Simple Stupid) file for a book about cancer I’d like to write one day. Even if I never do fully understand the metric system or dividing fractions at least I can explain to my hairdresser why I’m having more surgery soon.

Breast Cancer, BRCA and Stress Relief

Acupuncture. Self hypnosis. Meditation. Yoga. There are many ways to rid the body of negative effects from stress. My personal favorite involves a soak in the tub with my main man, Mr. Bubble. When frazzled, many of us resort to eating or drinking things we should not. I have done this as well. On the refrigerator of a friend I once saw a large sign reading “THE ANSWER IS NOT IN HERE.” The answer is also not in the liquor cabinet, beer cooler or wine cellar. For those at high risk for breast cancer or those who have already met the monster, complete stress relief can now be had for a mere $5.87 including shipping, thanks to some entrepreneurs in China.

Ladies and Gentlemen, I give you The Ultimate Gigantic Stress Relieving Breast Ball.

Squeeze your stress away

In my e-mail box this morning I discovered a junk mail message from a company called Sammy Dress. Located in Shenzhen, China, they call themselves a cheap online clothing store. Seriously. Among their offerings I spotted this squeeze toy, just as my finger hovered over the delete button. I had to read more.

Here is the description of this product, direct from the company web site:

Are you looking for a gift to your friends on April fool’s day? This Large Breast Ball may be the best gift choice for you to take! Besides, the Breast Ball is a fun and effective way to promote breast cancer awareness. Imprint your logo or promotional message. Promote your logo and relieve your stress with the Breast Ball. These promotional stress reliever toys are one-of-a-kind.

Main Feature:

  • Stress relief breast squeeze ball, touch it and you will feel good.
  • Produced by TPR material with jelly inside, non-toxic.
  • It is a squeeze toy for adult, and it felt vivid when you touch and squeeze .
  • Breast ball toy is comfortable, and easy to use.
  • Quite interesting, also quite distinct, this trick breast ball will make you smile all along.

As a writer and former marketing communications manager, this kind of language makes me howl with laughter. I can’t wait to order one just so I can feel “vivid” when I touch it. I plan to take it with me to the hospital for my next round of surgeries. I may even have to carry one in my purse at all times. Perhaps a matched set would be a nice gift for other members of my BRCA challenged family. Volume discounts are available!

The Ultimate Gigantic Stress Relieving Breast Ball. I’m feeling better already.

UPDATE: Direct from Hong Kong today…

OK, these are kinda creepy

I’m not sure I like these. For one thing they are gigantic! Maybe some guys would like playing with these Dolly Parton imitations.

Not much stress relief here.

More like weird sex toy than stress reliever but hey, I see great potential for gag gifts.

Breast Cancer Photos: Naughty or Nice?

Today I read about a woman in the UK whose Facebook photos were deemed objectionable and removed from her page. Her name is Joanne Jackson. Here is one of the photos in question:

Joanne Jackson – Is this photo obscene?

I decided I liked this woman’s attitude and went to Facebook to search for her. There were a large number of similarly named women and eventually I gave up, but not before I discovered the profile picture for another Joanne Jackson. Here is her photo:

Another Ms. Joanne Jackson Facebook profile photo

At first this made me laugh. Facebook is just plain daffy if they can’t figure out which of these photos does not meet their own “community standards.”

Images of women who have been through the upheaval of breast cancer surgery and reconstruction are readily available on the internet. They are a valuable resource for those in need of information on this topic. Many web sites and blogs include explicit photos of breasts in every shape, size and stage of reconstruction. They can be shocking, even sickening to those who have never seen what treatment for cancer of the breast really looks like.

One of the most profound and moving collection of images related to breast cancer can be found at The Scar Project. This non-profit raises awareness and funding for research by showing the world what living with breast cancer means for younger women. Breast cancer is not a pink ribbon. It is a brutal disease.

In a society where it is just fine and dandy for Jennifer Lopez to show up at the Oscars in an open negligee or for Moms to breast feed in public, surely we should be able to look at what it is that cancer does to breasts. Is Facebook the place to do it? Perhaps not yet, but I admire the pluck of the first Ms. Jackson. The second Ms. Jackson? Not so much.

Jennifer Lopez

BRCA1: Love and Breast Cancer

This is going to be mushy. Consider yourself warned.

Fourteen years ago in late May 1998, my then boyfriend and I took a fabulous vacation to London, the south of France, Monaco and Italy. Two weeks after returning home I found a big lump in my left breast and my life was forever altered.

There’s nothing like crisis to either cement relationships or destroy them. I consider myself one very lucky girl. Less than six months after my cancer diagnosis, my boyfriend asked me to be his wife. What can you say about a man who proposes to a bald lady? And I’m talking about at a fancy restaurant, with a symphony violin player and a breathtaking diamond ring. Only the perfect sort of proposal.

Christmas Day 1998, one day before Jim proposed.

Jim and I got married in late May, 1999 at Storybook Mountain Vineyards in Napa Valley. Next week it will be thirteen years since our “celebration of life, love and gluttony” took place and those who were there still say it was the best wedding they have ever attended. It was a wine-soaked, kick-ass three day party with lots of laughter, love and really good food.

Wedding reception dinner with Jim’s Dad sneaking a puff outside

As lucky number thirteen approaches and I reflect on this anniversary, what stands out to me is not the difficulties of this past year. Learning I was BRCA1 positive, going through surgical hell with bilateral mastectomies, knowing that more surgery is just around the corner, these are not what is top of mind. When Jim and I sit down to dinner together on Saturday night in the foothills of the Rockies to celebrate our wedding anniversary, I’ll be thinking about a sunny day in late May in the foothills of the Mayacamas Mountains where we exchanged vows. It was the most joyful day of my entire life.

Thank you Jimmy. I love you.

End of mush.

BRCA Carriers: Breast Cancer and Diabetes Risk

In 2006 at my heaviest and in 2011 more than 40 pounds lighter.

Many of us who discover they are at high risk for cancer due to their faulty DNA programming decide to make lifestyle changes to better the odds. While it is never possible to alter one’s genes, it is possible to make matters even worse by doing stupid stuff. We all know what that stupid stuff is. Things like smoking, heavy drinking and recreational drugs. Is being a bit roly-poly really in that same category?  If you are a BRCA positive breast cancer survivor and have been fighting the battle of the bulge like I have all of my life, it is time to fight the fat even harder and this war is not just about cancer. It is about diabetes.

As if it weren’t bad enough to be at high risk for more cancer, being a BRCA positive breast cancer survivor may double the normal risk of developing Type II diabetes. If you are overweight or obese on top of it, the risk of diabetes goes way up. What is a wine-loving  foodie like me to do?

In the May 2011 issue of Cancer, an interesting study entitled Diabetes and Breast Cancer Among Women With BRCA1 and BRCA2 Mutations was published. Here is the link to read the entire article: http://onlinelibrary.wiley.com/doi/10.1002/cncr.25595/pdf. They concluded that there is a 2-fold increase in the risk of developing diabetes in the fifteen year period after a breast cancer diagnosis for BRCA positive women. If overweight (a BMI greater than 25) the risks are sharply higher.

While I don’t have my knickers knotted up about this one lone study, it is commonly accepted that being overweight is a risk factor for many chronic diseases including diabetes, heart disease and some forms of cancer. My current BMI is 22.3 which is well within the normal range. But six years ago my BMI was at an all-time high of 30.3 which is seriously fat. How did I lose nearly 50* pounds? Carbohydrate restriction. I am committed to this as a way of life – not a diet. Every time I veer away, the blubber comes after me in a hurry. Say what you will about cutting carbs. It works for me in my ongoing fight to remain cancer free and now I hope it will also keep the diabetes boogie man from darkening my door.

*The photo of me above in 2011 is prior to my bilateral mastectomies which shaved another nine pounds off. My current weight is 134 pounds. At 5 feet 5 inches tall, this gives me a BMI of 22.3.

BRCA Genes and Mother’s Day

My mother, my baby self and sister in 1961.

 

On Sunday in celebration of Mother’s Day, my husband and I will drive up the Columbia River Gorge for a picnic at a favorite winery. From a bluff hundreds of feet over the river, we’ll gaze at Mt. Hood, soak in the sunshine, sip a glass of wine and toast our respective mothers. My Mom lives on the other side of the country on a goat farm in upstate New York, far from any of her biological children, but in the company of many who love her. My beloved James lost his mother to pancreatic cancer in 1991. These two remarkable women never met one another. I doubt they would have had much in common except maybe an appreciation for a good slice of pie. In one way though, they were very much alike. They were and are, two of the very best Moms in the whole wide world.

It has been a tough year for my Mom with two daughters dealing with BRCA surgeries. I’m sure she wonders whether her grand daughters and great-grand daughter will face the same struggle. No matter what the future holds, I speak for our extended family when I say we are simply glad she is here to help us by being what she has been for so long – a truly great Mom.

Happy Mother’s Day to all of the wonderful Moms in our lives.

James and his Mom in her “Rosie the Riveter” days.

 

 

BRCA Surgeries: The Bra Problem

There is nothing like a bilateral mastectomy to mess up a girl’s wardrobe. I was looking forward to treating myself to new clothing of all sorts once the deed was done. There was some gnashing of teeth when I tossed several really nice bras that no longer fit, but I had known for months this was coming. The plastic surgeon had advised me to think of breast reconstruction as a process that requires multiple steps. I understood the complexity of mastectomy and DIEP flap reconstruction. What I did not know was that finding the proper attire for my newly minted girls would also come in stages.

Stage I – Nothing. This lasted for a good six weeks. Both breasts were rock hard, bruised, swollen and quite painful. A flannel pajama top or a t-shirt was my uniform. No need to worry about jiggling. Rocks don’t move. Besides, I had an area on one incision that wept continually and required a dressing. I referred to it peevishly as “drippy boob.”

Stage II – Plastic surgeon advised it was okay to wear nothing, or if I felt the need for a bra, to use a sports bra. There is no way in hell that worked. Too painful. An inexpensive camisole lined with a shell bra was tolerable. Physical therapy began and as the swelling diminished, both breasts softened but at different rates. One began to droop, the other formed a large pocket of saggy skin near the armpit. I had no nipples. Due to the nature of my surgeries and previous cancer treatments, there were very different scars on each breast. When I tried to wrestle these two mismatched boobs into a bra, it was an exercise in frustration.

Stage III – My current stage is limbo. In two months, revision surgery will change everything. A few compromise bras are in the closet, but their days are numbered. Who knows what’s coming next? In the meantime there are a few bras that have caught my attention:

The Ice Bra

The Ice Bra Cometh?

It seems the Japanese company, Triumph, sees the need for a bra that keeps ladies cool during hot summer months. This tongue in cheek response to the need for energy conservation in tsunami-devastated Japan comes with built-in ice packs and a small fan. I guess the fish tank design on the cups is just for fun? Given my breasts have little or no feeling, this icy thing probably won’t be on my shopping list but hey, I could always use another fan for hot flashes.

The Wine Rack

Have wine will travel

Some beer slurping boys at a company called The Beerbelly” have designed a sports bra that holds the contents of an entire bottle of wine attached to a tube for easy sipping. Ideal for sporting events or in my case, long waits in the doctor’s office. Wrong on so many levels, but my plastic surgeon could not quibble with the fact it is indeed, a sports bra.

The Joey Bra

The joey bra with pouch

Last but not least, a bra with a pouch. Shove that cell phone, ID and a credit card in the small pocket on the side of the bra and leave the purse at home. Two enterprising college students at the University of Washington have just launched this new line. Uh, sorry ladies, but there’s no way in hell I’m going to dig around in my bra when I get a phone call or want to pay for a latte.

For the moment, I’ll just keep dreaming about the perfect bra and continue to be patient while I wait for the next step in my boob building adventures.