BRCA Surgery Decisions: A Devilish Dilemma

Miss Bubble, enjoying the "healing quilt" in between my surgeries

 

Statistics on cancer risks for those with defective BRCA genes are readily available, but teasing out numbers that assess any single individual’s risk is all but impossible. Science can provide a ballpark range, but there are many mitigating factors that can place one at the low end of the scale or all but guarantee that cancer will be headed your way.

The choice to select surgery as a means to manage cancer risk is insanely difficult for many people. Not for me. In some respects though, I do feel as if I’ve made a lousy bargain with the devil. I’m trading precious body parts for the hope of a normal lifespan. There are no guarantees, only a reduction in risk. I can still get breast or ovarian cancer even once all my girl parts are history. Other problems such as heart disease, osteoporosis and additional forms of cancer are very real possibilities when this “Year of Living Surgeries” is over. Apologies to that fabulous movie “The Year of Living Dangerously,” when Mel Gibson was just sexy, not crazy.

Are the BRCA surgeries worth it?

In my head is the idea for a novel based on this question. I hope it has a happy ending but I’m not going to wait around to see the results in my own life. In the short term I’ll write something else. Being worried about the future is not how I want to spend whatever time is left on my personal meter. Nor do I want to create a bucket list. Unless of course, it is what we call the “drink now bucket” around here. These are wines that have been aging in our cellar that need to be consumed before they pass prime drinking enjoyment.

In 1998 when I was first diagnosed with breast cancer and terrified that every tiny hiccup was a recurrence, my surgeon gave me a good piece of advice. “Go out and live your life” he said. That is what I’ve been doing for the past fourteen years.

BRCA1 and BRCA2: Wine and Breast Cancer

Niche Wine Bar in Vancouver, Washington

Women have heard the message: Alcohol raises risk for breast cancer. If you do drink, limit alcohol to one drink a day. Blanket statements like these have value. The recommendation is crystal clear and applies to everyone. For a wine connoisseur like me, a BRCA-positive breast cancer survivor, this presents a dilemma. Is wine carcinogenic or is the one-size-fits-all alcohol directive not so cut and dried? It may just depend on what kind of a mutant you are.

The health benefits of wine have been scrutinized and while it does appear there are some modest benefits, all forms of alcohol can be quite problematic for humans. Why not just become a teetotaler and be done with it? My answer is that wine is an integral part of my life and work. My husband and I share this passion. When we married, guests were invited to a Zinfandel tasting and vow exchange at a Napa Valley winery. At one time we were the owners of a Malbec vineyard in Mendoza, Argentina. I wrote a book about our experiences.

The truth is I just freaking love everything about wine.

In 2011, the publication The Breast Journal published a small study from research completed at the Universities of Montreal, Ottawa and Toronto.  The purpose of this study was to validate the findings that link alcohol consumption and increased breast cancer risk. A total of 857 patients were studied, 43 of which were BRCA positive. The research found a striking difference between those patients who were BRCA1 versus BRCA2. The BRCA1 group showed a 62% lower risk of breast cancer than the general population if they were wine drinkers, but the BRCA2 group showed a 58% greater risk.

All studies like this must be taken with a grain of salt. The relationship between alcohol and breast cancer is not well understood, nor is the mechanism that may be at work to protect some and harm others. While both BRCA1 and BRCA2 are tumor suppressor genes, distinct differences exist for the risks associated with each. Science can only speculate at this point what may be behind this interesting finding. More research is needed.

In the meantime, I continue to imbibe and enjoy the juicy rationalization that perhaps, being a mutant of the BRCA1 variety is not such a bad thing, at least when it comes to the fruit of the vine.

BRCA Surgeries: Recovery Time

Photo credit: Helga Weber

 

How long does it take to recover from a mastectomy? This question is the subject of a thousand conversations I’ve read in message boards, discussed with other breast cancer patients, doctors, nurses and experts. Truth is, everyone is different. All bets are off when you sign on the dotted line to go under the knife.

When one has five surgeries over a seven day span like I did, it means long periods either under general anesthesia or in that no man’s land called the recovery room. Time disappears in large chunks. Much is forgotten right away, whether it is good or bad. Kurt Vonnegut’s famous novel “Slaughterhouse Five” invites the reader into the story with the line “Billy Pilgrim has come unstuck in time.” Last night I came unstuck in time and relived a brief hospital episode that had been tucked away.

All of a sudden I was in the recovery room once again. A nurse was never more than a few feet away. She called me funny, sweet names like ladybug and pumpkin and spooned ice chips into my dry mouth. Across the corridor from where I recouped along with several other post-op patients, they wheeled a woman into a smaller room, walled off with glass. She was impossibly ancient.

Technicians came and went from the old woman’s bedside as they tried to bring her around without success. They spoke to her in loud voices, patted her hands and face, observed and waited. At one point  some type of mask was held against her withered face as medication was forced into her lungs. Granny did not awaken.

I had no sense of how long I was in the recovery area, nor could I say if this had been my third, fourth or fifth surgery, but I knew with certainty the old woman was in serious trouble. After a while she was wheeled out of my sight. I recalled this did not bother me. Drugs dull every aspect of normal brain function and I am grateful for this fact. Why this memory surfaced last night, nearly three months after my complicated bilateral mastectomy, is a puzzle. This was not a dream. I was not asleep and it was batshit crazy real. Now I understand how soldiers can reawaken battlefield trauma at odd moments. The grocery store can become a killing field just as my bedroom had become a post-op recovery room.

What happened to that elderly woman? Did she ever regain consciousness? There is no way to answer this question. Perhaps I will come unstuck in time again. I hope not. There are so many things I do not want to know. I’m still recovering.

Breast Cancer Surgery, Physical Therapy and My Shoes

Yikes!

Not being one of those women who owns a bunch of shoes, I don’t quite get it. Maybe that is because I have wide, inflexible feet that require orthotics and cannot wear flip-flops, never mind those sky-high platform pumps once reserved only for hookers. Just a trace of envy lives there perhaps, since most days my achy feet are confined to running shoes. Love of footwear is a common girly thing, but not for me. So, it was a rare moment when I found myself with a strong desire to photograph a bunch of women’s shoes, lined up in a haphazard way at the entry to a dance studio where I sat and waited to meet with a physical therapist. These shoes had a story to tell.

Portland, Oregon is one of those cities that has become trendy in recent years, in a quirky, low-key, ultra-green, creative, bohemian, food cart sort of way. Stumptown is cool, her suburban sprawl, not so much. I live in the sprawl and it suits me, but that day as I sat on a poofy couch surrounded by the colors and decor of India, large potted plants and a row of incredible shoes, I looked down at my tidy blue and white trainers with double-knotted white laces and saw myself anew.

A pair of large, chunky leather boots with square silver buckles. Red ballet flats, slightly scuffed. Those five-toed things that are supposed to be like walking barefoot. These were shoes I would not wear, even if my feet allowed. High-top black sneakers. Wedge platform ankle booties. There was a yoga class in progress and I could hear Zen-like music, although I could not see any of the participants. I imagined them to be ethnically diverse, attractive, slender, employed in good jobs, masters of composting and backyard chickens. They could lift their arms above their heads, twist, turn and stretch in every way. I was a housewife from the white-bread burbs, barely able to drive my car and in constant pain some seven weeks after a bilateral mastectomy.

From down the hall, the physical therapist came to collect me. Casually dressed, she wore no shoes, just brightly colored socks. Over the next six weeks she would  repair my shattered anatomy. Hours of expert massage with strange metal tools. Deceptively simple exercises. Self-massage techniques. A bit of psychology. This combination and my own dogged determination to do precisely what she suggested worked wonders. Pain melted away. Strength and stamina improved. Each week I returned, twice a week. The entryway shoe collection varied with my appointment time. I wore the same running shoes, but the person in them slowly became more like the old me.

At some point I realized that the women in the yoga class were not the Portland hipsters I’d imagined. Most were just like women everywhere. One or two women in that yoga class would get breast cancer, according to the odds. My talented physical therapist has way too much job security. And I have way too few pairs of shoes.

BRCA for Dummies and The Teenage Mutant Ninja Turtles

Courtesy of crazy-frankenstein.com

 

Ask anyone who is BRCA positive if they’ve had difficulty explaining their situation to others and they will scream a very loud YES in response. The learning curve surrounding the HBOC Syndrome (Hereditary Breast and Ovarian Cancer) is steep. The choices are complex and nuanced. No two individuals are alike and much depends on deeply personal choices. It ain’t easy being a mutant.

At the end of the process of screening, counseling, doing the test, receiving results and discussions with a gaggle of medical professionals, there comes a point where patients realize there are three main areas to consider in making decisions about the management of a defective BRCA gene:

Increased Screening (catch that cancer early)

Chemoprevention (fiddle with hormones that influence cancer)

Surgery (beat cancer to the punch)

A gross oversimplification of the options, yes. That is exactly what I want. An easy way to define the salient features of this biological dilemma and how to deal with it. An elevator speech that outlines BRCA in under a minute. A tutorial my dry cleaner, hairdresser or a casual acquaintance would understand.

For BRCA folks like me who have already gone toe-to-toe with cancer and lived to tell, the content of this elevator speech is not the same as someone like my sister who has never had cancer. Survivors differ from Previvors, the term given to those who have the genetic disorder but have not yet been diagnosed with cancer.

I’ve passed the first surgical hurdle in my BRCA travels – bilateral mastectomy with immediate reconstruction. More surgery lies ahead. My elevator speech will keep changing, along with my body. The elevator speech is only one of many communication tools that would benefit the BRCA community. The fact is, a genetic disorder like BRCA affects relationships at every level and patients suffer greatly as they grapple with painful, life-altering decisions and then attempt to inform, educate or persuade others who are often skeptical as well as ignorant.

Once I’m done with the elevator speech, the next chapter in BRCA for Dummies will be “How to Deal With Morons.” It will include snappy retorts to ridiculous comments like:

“Oh, you’re exaggerating. Everyone has to die from something.”

“Can you get medical marijuana for that?”

“It’s all up to the man upstairs anyway, isn’t it?”

Those teenage mutant ninja turtle dudes probably had the right idea. Do the best you can with the hand you’re dealt, fight for what’s right, and eat lots of pizza. The world can always use a few more cool mutants like those guys. Forget the BRCA for Dummies idea. Give me some Turtle Power!

BRCA and the Lingo of Breasts

Works of comedy genius, George Carlin

 

Comedian George Carlin’s classic monologue “Seven Words You Can Never Say on Television” included a rather benign slang term for breasts.

Tits.

George went on to say that he thought the word tits did not even really belong on his list because it sounded more like a good name for a snack food than something that would offend TV censors. Cheese Tits, Tater Tits. That sort of thing. When it comes to breasts there are a plethora of euphemisms, nicknames, slang, obscenities and just plain goofy words used to describe female mammary glands. For this writer, words and their meanings, origins and ever-changing shifts in usage are more than a passing fancy.

Where did some of the most common expressions for breasts come from? Tits is an easy one. It is a version of teat, a very old word and we all know what it means. But boobs? Turns out that one is less straightforward. Use of the term boob or booby dates to the sixteenth century and came into the language as a reference to a stupid person or certain large, ungainly birds who were also presumed to be dim-witted. The linguistic community seems unsure of the exact path it took to arrive at the current slang usage of boob/boobies.

While the etymology of all words mammary related may be of intellectual interest to my writer self, what intrigues me as a breast cancer survivor and a carrier of a defective BRCA1 gene, is the way the medical community has a lexicon all their own that surrounds the almighty breast. They HAVE to. In my plastic surgeon’s language, the two rather large, saggy troublemakers that once belonged to me were dispassionately described as “pendulous.” They exhibited “asymmetry.” Surgery would reduce my cancer risk and improve the “cosmesis.” In other words, my lopsided middle-aged bust line could be reworked into a smoking hot rack. Or so I hoped.

Austin Powers dubbed them jubblies and dirty pillows. High beams and honkers arrived courtesy of our car culture. The restaurant empire that is Hooters is in a category by itself. Melons and muffins for the food fans. Ubiquitous milk references. Jugs and knockers anyone? A vast array of secondary terms exists purely to describe the size of female mammary glands. What about the boys and their breasts? The male of the species is shortchanged here in every way. Man boobs are at best, an embarrassment, but not to worry, guys. Plastic surgeons are quite delighted to fix that situation and describe it with a proper term: gynecomastia.

BRCA Surgeries – Round 1 (Part 2)

The magical ruby slippers

There’s no place like home.

After twelve days in the hospital I got a breath of fresh air for the first time as a chipper volunteer wheeled me to the car. My mother toddled alongside with an impossible load of gear, like a faithful sherpa. James, my beloved, waited curbside with the engine at idle. He positioned a pillow to protect my delicate parts from the evil seatbelt. Instead of Dorothy’s ruby slippers I had red sock monkey pajamas.

Thrilled and nervous, exhausted and giddy with delight all at the same time, I was eager to see my cats, eat home-cooked food and sleep without constant interruption. Not in a bed. Sleeping flat is not possible with the type of abdominal surgery I’d just had. My bed would be what had come to be known as the Surgery Chair. A baby-poop brown motorized recliner.

“Outstanding organizational skills with excellent attention to detail.” That is the kind of thing that would routinely appear in my performance reviews when I worked in the corporate world. No amount of research or planning could have prepared me for the adjustment from hospital to home. I had not expected to be so debilitated that I’d need a walker. My body had gone from age 50 to age 85 overnight, and was weak, clumsy and vulnerable.

Nestled in the Surgery Chair with Mom the RN to attend to the icky medical details, dispense meds and suffer my endless criticism of how she scrambled eggs, my crabbiness and anxiety level had somehow gone off the charts. Instead of basking in the joys of home I was frightened and easily confused. Annoyed at even the tiniest inconvenience, I have no idea how my husband put up with the creature I’d become. I guess it helps that he has a large, well-stocked wine cellar.

The first time I took a shower at home I burst into tears as the wand fell on my back. Bruises covered my entire chest and belly, as if I’d been kicked by a mule. Five JP drains dangled on a lanyard around my neck. I could not wash my own hair, hold a towel or get dressed. No amount of soap and warm water seemed to remove the stink of the hospital.

Without copious amounts of narcotics, I don’t know how any of us would have survived the transition. I slept. Day and night. Each day, some improvement occurred. After a week at home I retired the walker. The swelling that was so bad in the hospital that my doctor nicknamed me “Michelin Man” continued to subside. Food started to seem better. Mom extended her stay, and I was grateful.

If it takes a village to raise a child, it takes a whole mess of folks to help a woman who goes through the BRCA surgeries. So, I give thanks. For my family and friends, for caring medical professionals, for colleagues, for the FORCE web site, for dark chocolate, Amazon’s Kindle, fat cats and the power of sock monkeys.