Inaccurate DNA test plagued woman for more than a decade after double mastectomy

A Missouri woman's years of mental anguish stemmed from a DNA testing mistake.

According to Maureen Boesen's online story in the HuffPost, she "made major decisions — like having a double mastectomy — based on a false positive. I was robbed of the chance to breastfeed my babies, and it broke my heart."

The Kansas City mother of three's recent guest article contends she "just couldn't get past the fact that my inaccurate test result meant I had been carrying around a devastatingly unnecessary burden for more than a decade."

Because she and her two sisters have an extensive family history of cancer (ovarian and breast), Boesen not only opted for the preventive bilateral mastectomy at age 23 but was planning to have a complete hysterectomy by the age of 35. A second DNA test, with its negative result, quashed that idea — especially after a third test also showed she didn't have the dangerous BRAC1 gene mutation that would mean a 75% lifetime risk of getting breast cancer and a 50% chance of contracting ovarian cancer.

What was surprising, Boesen reported, was that the new results "were even more shocking and overwhelming than finding out I was positive. I was feeling so many emotions — confusion, sadness, anger, anxiety, depression, relief — all at once."

More information about false positives, BRCA1 and BRCA2 mutations, and other prophylactic surgeries can be found in ˆRollercoaster: How a man can survive his partner's breast cancer," a VitalityPress book that I, Woody Weingarten, aimed at male caregivers.

Frequent heartburn, acid reflux could lead to esophageal cancer, which is rapidly on the rise

Increased incidences of acid reflux may be linked to a spike in esophageal cancer.

At least that's the conclusion of a story by Stephen Perrine in an old AARP Bulletin I just unearthed from a storage box in my laundry room closet stuffed between two sheets of paper with other medical advice that I neglected to heed. 

Many people "don't realize that common heartburn symptoms can both lead to and mask something more serious," reads the story and a caption accompanying the article.

"Esophageal adenocarcinoma — cancer of the lining of the soft tube that delivers food and drink from the mouth to the stomach," Perrine's piece says, "has increased sevenfold since the early 1970s," quoting Dr. Paul Oberstein, director of the gastrointestinal oncology program at New York University Langone's Perlmutter Cancer Center in Manhattan.

The cancer's increase "has paralleled the rise of gastroesophageal reflux disease (GERD), the medical name for when you have bouts of acid reflux two or more times per week."

According to David Odell, lead investigator on a study of esophageal cancer funded by the American Cancer Society, thoracic surgeon at Northwestern Memorial Hospital and assistant professor at Northwestern University Feinberg School of Medicine, "it's one of the fastest-growing issues we have in the population," the AARP story reports.

Chronic heartburn, it says, "can sometimes lead to a disorder called Barrett's esophagus, in which the cells of the esophagus…being to change into glandular cells like those of the stomach." Five percent of GERD patients "will develop Barrett's, and 10 percent of those will go on to develop cancer."

The story also notes that one in every five Americans experience heartburn or acid reflux on a weekly basis, with 40 percent dealing with it at least once a month.

Estimates by the American Cancer Society are that roughly 16,000 Americans die of esophageal cancer annually. Approximately four times as many men get the disease as women, with 85 percent of the cancers being found in people 55 or older.

The main causes of GERD are obesity, a tendency toward large meals, and a high-stress lifestyle, Perrine's story indicates.

More information on links between drugs and other treatments to additional disease is available in "Rollercoaster: How a man can survive his partner's breast cancer," a VitalityPress book that I, Woody Weingarten, aimed at male caregivers.

Weekly boosts breast cancer caregiving book

San Francisco paper bolsters 'Rollercoaster,' male caregiver's guide to light at tunnel's end

Woody and Nancy now

Abracadabra!

Like welcome magic, the first full-length newspaper feature about “Rollercoaster: How a man can survive his partner’s breast cancer” has appeared.

The print version was published Jan. 10, 2015. 

An online edition followed.

Editors put an intriguing headline on the piece: A memoir about cancer from the other side of the bed.

Here's the story, reprinted by permission in its entirety:

by liz harris, staff writer

j. the Jewish news weekly of Northern California

Their love story is sweet and also remarkable: Woody Weingarten and Nancy Fox met as teenagers in New York and vowed eternal love. They dated for a while and then, questioning their commitment, cut it off and completely lost touch.

Decades later, after a chance meeting in Mill Valley, their love rekindled. At midlife, they became husband and wife.

Seven years into their marriage, she was diagnosed with breast cancer. Life became a wild ride.

In “Rollercoaster,” a book 20 years in the making, Weingarten offers an unblinking look at how breast cancer affected him and Fox from diagnosis to the present day. Its primary focus is to help male caregivers through the process, thus the subtitle: “How a man can survive his partner’s breast cancer.”

“Rollercoaster” is also meant to help others navigate the emotional and physical ups and downs, as well as the mountains of confusing medical studies and different treatment options, that come with the disease.

Today life is good, Weingarten declares during an interview in the couple’s sun-drenched hilltop home in San Anselmo. With Fox cancer free for many years, they travel, enjoy a busy social life and pursue lifelong passions. Weingarten, 77, who retired in 2007 after 24 years as managing editor of J. (formerly the Jewish Bulletin), still writes for local newspapers and is working on a new book. Fox, 75, a pianist whose white baby grand piano is the focal point of their living room, still performs at local retirement homes, senior centers and JCCs.

Weingarten acknowledges that “Rollercoaster” isn’t exactly an easy read, but he believes it is a valuable one.

“My major aim is to help people — men whose partners have any life-threatening disease,” he says. “What you go through. What you can expect.”

He utilized his journalism skills to craft a love story/“memoir-chronicle” and comprehensive resource for anyone affected by breast cancer, with current, meticulously researched information on medications, scientific studies and helpful resources.

He also includes a short list of books written for partners of breast cancer patients. “In the last 15 years there have been 15 books published by [and for] men,” he says, while noting that “most of them are way out of date, not well written.”

Weingarten’s book is “positive,” he says. “There’s light at the end of the tunnel.” It also is sprinkled with humor. In fact, asked for the most important piece of advice he can give

Caregivers have each other's backs — always

'Rollercoaster' author and wife turn caregiving and love into a permanent lifestyle choice

I, Woody Weingarten, always have my wife's back. 

And she, Nancy Fox, always has mine.

To whimsically stretch the metaphoric cliché, we always have each other's fronts and sides as well.

Much of that's been chronicled in my new VitalityPress book, "Rollercoaster: How a man can survive his partner's breast cancer."

Its focus is caregiving.

For Nancy and me, that's a lot more than a word — it's a lifestyle choice, one we insist on making every day.

Sunrise view from hot tub in San Anselmo.

Ever since Nancy's diagnosis 20 years ago we've started every a.m. with a soft kiss, trading the phrase "Good morning, I love you."

We never add a "too."

Just an unadorned "Good morning, I love you" in each direction.

We met the first time almost 60 years ago.

The second time, the one that stuck, didn't happen until nearly 30 years later. 

Totally across the country.

We've now been married 27 years, and still make sure we spend a quiet 10 minutes each morning in non-sexual intimacy. 

Chatting. Touching. Smiling.

A lot of times the ritual takes place in the hot tub behind our San Anselmo home. Watching a sunrise.

Sometimes we sit in our deck chairs. Or on our living room couch. Or reclining in bed. The location doesn't matter; the good feelings do.

Sometimes we're silent. Sometimes we list the positive things in our lives. Sometimes we verbalize our love.

At night now and then, we climb into the hot tub and check out the twinkling stars or glowing yellow moon. Those occasions underscore the day's tendernesses.

We've never labeled exactly what we do. But I just thought of something that fits:

Each of us is a love whisperer.

Book on male caregiving wins readers' praise

Reviewers give 'Rollercoaster' five stars, say it's 'frank,' 'eloquent' and a 'must read'

Readers are giving "Rollercoaster: How a man can survive his partner's breast cancer" — the new VitalityPress book I, Woody Weingarten, wrote about being a male caregiver — five-star ratings, and calling it a "must read."

On Amazon, for example, certified retirement life coach Gloria Dunn labels it "a love story written…charmingly with both wit and compassion. If you only read one book about a couple going through the cancer process together, this is a must read."

"Black Blender" writes that it's a "terrific book on a neglected subject."

And Georgia McDaniel, one of my wife's "chemo-sitters" and a current breast cancer patient herself, writes that she "appreciated the insertion of various statistics or results from studies to punctuate a particular point."

Leah Garchik

Leah Garchik, a daily columnist for the San Francisco Chronicle, notes that I've "written a memoir, an instructional guide, a journal of emotions…Anyone who has suffered through watching a loved one face possible mortality will find succor here."

Callie Raab, herself an author, writes she found the book "surprisingly frank, eloquent, moving, and enlightening…and a powerful reason for others in a similar situation to hope."

And on the Goodreads website, Fran French, a medical professional, concurs: "I laughed, cried and felt totally immersed in the words and feelings Woody Weingarten expressed. A must read."

Marin Man to Man gives vulnerable guys a boost

Support group for male breast cancer caregivers still going strong after two decades

Marin Man to Man is a weekly support group I've been running for almost 20 years.

It's for men whose partners have or had breast cancer or some other life-threatening disease.

I, Woody Weingarten, have found the group can keep guys feeling healthy — or give them a crucial boost when the walls of their lives seem to be caving in.

A section of my new VintagePress book, "Rollercoaster: How a man can survive his partner's breast cancer," touches on what the group does and can do.

It notes, for instance, that:

Support group meets over breakfast.
Frankie Frost/Marin IJ photo.

We can complement Internet info, factoids and data, often differentiating between truth and fiction.

We can de-code what physicians and other healers say — and don’t say.

We can increase understanding offered by relatives, friends and co-workers because we frequently empathize when they can’t.

We can — without embarrassment — be warm and friendly, direct and anecdotal, and add an intimacy factor because we’re human beings and not a book, journal, chat-room or blog.

We can increase a newbie’s stockpile of contacts and where-do-you-find-its because we’ve been there.

Best of all, we can be ultra-illuminating because we can share what’s worked for us and what hasn’t.

For two decades Marin Man to Man has attracted fellows habitually willing to be candid about themselves and their partners,

Caregiving author — surprise! — gives thanks

Writer's eyes mist up at end of a flawless day as he re-reads dedications in 'Rollercoaster'

Thanksgiving Day 2014 is gone. So's the bird. And the cranberries.

But the good feelings linger on.

The holiday started with my wife, Nancy Fox, and I in our hot tub splitting 20 minutes of spontaneity itemizing what we're grateful for.

We covered a lot of ground.

Although I'm sure we each could have gone on for at least another 20 minutes, we decided to stop at an emotional peak.

And only once did I feel a need to refer to this marking my partner's 20th year of being free of breast cancer (a subject I cover thoroughly in my new VitalityPress book, "Rollercoaster: How a man can survive his wife's breast cancer").

Midway through the day, we added to the warm 'n' fuzzy sensations.

We traveled to Whistlestop, a San Rafael facility that provides transportation, programs and meals for seniors, the disabled and the poor all through the year — not to mention a special lunch with all the trimmings on Turkey Day.

Nancy played background piano for 90 minutes.

Nancy Fox performs as Woody Weingarten
 reads song requests from audience
during Thanksgiving lunch. Photo by
Frankie Frost/Marin Independent Journal.

I'd checked with each diner and volunteer for his or her favorite tunes, then handed the lists to my wife. She easily rendered each one (because she miraculously retains thousands of tunes in her mind, and plays them all by ear).

Heads bob. Bodies that may otherwise be bent with pain sway comfortably. Toes tap.

And faces smile.

It's ecstasy for the two of us to be able give back this way each year.

And it was an unexpected pleasure to see our photo on the online cover page of the Marin Independent Journal, our local daily newspaper, accompanying its story of the meal.

Then, a family dinner for seven happily topped off a flawless Thanksgiving.

But my eyes misted as I appropriately ended the day re-reading the dedication to my book. I was again moved by my interactions with:

• Nancy, my soulmate, wife, friend and companion who supported "Rollercoaster" even when it crossed the line of intimacy and took forever to finish.

• Irving N. Weingarten,, my father-hero who up to his dying breath was convinced I
should write a book — though I suspect he would have preferred a less weighty volume.

• Matilda Weingarten, my mother whose immense strength I failed to see until her final years.

• Janis L. Brown and Mark D. Weingarten, my daughter and son, who consistently gave me love and admiration, even when I occasionally handed them inflexibility.

• Zachary Weingarten and Drew Brown, my grandsons, and Hannah Schifrin, my granddaughter, who have brought me pleasure upon joy upon delight.

• Laura Schifrin, Hannah's mom, who generously sanctioned tons of time — which meant gobs of fun — for me to spend with her effervescent kid.

• Marv Edelstein, Dan Goltz, Heinz Feldman, John Teasley and the other Marin Man to Man support group regulars and drop-ins who for decades endured my incessant chatter.

• Edward Marson, whose artistry is responsible for the graphic design of my book's covers; Larry Rosenberg, whose photo made me more pensive than ever; Alan Babbitt, whose back-cover shot lovingly captured Nancy and me lovingly staring at each other; and Wayne Heuring and Steve Cook for proofreading and copy-editing "Rollercoaster" and making me look at every word, especially a few tortured metaphors and similes.

• Charlie Durden, a friend I will always miss, who vanished from my life one day into the L.A. smog, and died.

• All those buddies, acquaintances, relatives and colleagues I haven't cited by name who
helped me and Nancy through the breast-cancer years (as well as after and before).

And, last but definitely not least, each and every caregiver and patient who's been forced to ride in a cancer rollercoaster.

Giving thanks on Turkey Day and every day

Breast cancer upshot — a grateful patient who survived, a grateful surviving caregiver

Thanksgiving is but a blink and a quarter away.

Which triggers thoughts about what I'm grateful for (parallel, I expect, to what most folks living in these United States experience).

This year, my wife's 20th free of breast cancer, I'm particularly thankful for her survival. And for my having survived.

And for every day we're alive.

Being a patient can be tough under the best of circumstances. Being a caregiver certainly isn't easy. Facing a life-threatening disease can make it all the more difficult.

I shudder even now when recalling what we've had to deal with — the malady, its treatments and aftermath, an unrelenting up and down journey that I've chronicled in my new VitalityPress book, "Rollercoaster: How a man can survive his partner's breast cancer."

Rainbows bounce off dining room table in
the home of Woody Weingarten and Nancy Fox.

But the image I try to retain in my mind is totally positive. It's of the circular glass-top table in our dining room, one whose artistic acrylic base acts as a prism that turns natural sunbeams into rainbows streaming throughout the room.

Fantabulous! Breathtaking! Not bad!

Twenty years ago we'd wanted to replace our unattractive rectangular wooden table that was surrounded by eight uncomfortable wooden chairs that could have passed for a torture rack.

So we looked, and we looked, and we looked.

Furniture store after discount store after department store.

Nada! Zilch! Diddly squat!

Then, after months of searching, we chanced across a wondrous table at an upscale showroom in Berkeley. We couldn't come close to affording it.

So we decided to track down the San Francisco-based Russian émigré artist who'd created it. And we did.

We asked him if he could build a less expensive version for us. He could.

But we still couldn't afford it.

So we let it go.

Until a couple of months later, when my wife, Nancy Fox, was diagnosed with breast cancer.

We both were terrified she might die — soon.

So we instantly decided to buy the table, figuring we needed to live "here and now" and enjoy whatever we could with whatever time she had left.

Two decades later we're still enjoying the furniture.

Every day.

Even when it's cloudy and there are no rainbows.

And we've mentally amortized its cost so, in our minds, we could afford it.

Panel chair presented 70 awards in 7 years

Woody Weingarten ending a 10-year stint as Quality of Life commissioner, relishes legacy

After spending a significant, fruitful decade on the environmentally-oriented San Anselmo Quality of Life Commission, I, Woody Weingarten, have resigned effective Nov. 30, 2014.

I'm a little sad about it.

But I desperately coveted the hours required to do its work.

Woody Weingarten (right) and Kevin
Donahue (and his daughter) march
in Country Fair Day parade.

To put it into context, my tenure (which included six years as chair) equaled half the length of time spent immersed in my wife's breast cancer, its treatments and its aftermath — and doing research for my new book, "Rollercoaster: How a man can survive his partner's breast cancer")

I've also spent 19 years being the point person for Marin Man to Man, a support group for caregiving males whose partners had contracted the disease, an organization that's one of the focuses of the book.

I have no plans to leave that chairmanship.

But in the letter I read to fellow QOL commissioners I noted that "after considerable thought and with much regret" I found it necessary to step down since promoting "Rollercoaster" will "require a major chunk of my time."

Keeping this blog current, by the way, is part of those efforts.

And though I didn't cite specific achievements of the commission, I did say I'd always remain proud of the advances made during my multiple terms.

Want some examples?

Well, we helped get approval for a weekly garden exchange and an organic food stand on the lawn of Town Hall, led the local movement to substitute reusable bags for plastic at supermarkets and drug stores, obtained free parking for plug-in electric vehicles, won removal of book bins that curtailed revenue for the public library, initiated a free Connect the Green Dots lecture series, marched with electric cars in annual parades, and staffed booths at the Country Fair Days and the Marin County Center Eco-Fair.

And, on behalf of the commission, I presented 70 plaques at Town Council meetings to "unsung heroes" over a seven-year period — Green Awards for green-oriented achievements, Silver Awards for other activities that benefitted the town or vicinity.

But none of those actions address the educational materials we disseminated. 

Woody in Quality of Life Commission booth.

We offered tips on saving energy and water, using public transportation and bicycles instead of driving, substituting LEDs, certifying businesses as green, and eliminating junk mail. 

We also voted to endorse the town's Climate Action Plan, the Deep Green option of Marin Clean Energy, recycling (including cloth diapers, batteries and athletic shoes), the boycotting of plastic water bottles, rejecting Styrofoam containers, stores not stocking rodenticides, climate-friendly landscaping, spruce-up days and shrub-trimming, unplugging home electronics when they're not in use, home composting, Earth Hour, shopping locally, and picking up dog poop.

Plus — as the cliché goes — more, much more.

Not a bad legacy, I'd say.

I have every intention, parenthetically, to continue pushing for environmental advances as well as the betterment and beautification or the area in which I live.

All of which falls into what my dad, my hero, taught me over and over on his lap:

Leave the world a better place than you found it.

Softening the impact of breast cancer chemo

Humorous photos don't appear in 'Rollercoaster' but helped couple deal with hair loss

Rhoda Draws in her studio.

Humor can help patients and caregivers cope.

So can artistic flights of fancy.

At a time when her breast cancer and chemo-induced loss of hair turned my wife, Nancy Fox, into a portrait of cheerlessness, Rhoda Draws, a painter-caricaturist-friend based in Mill Valley, California, superimposed some playfulness on half a dozen photographs.

Nancy couldn't help but smile.

Nor could I.

Nancy, digitally enhanced.

Rhoda, who's also an author and teacher, presented the re-imagined photos (aka digitally enhanced, or cyber-imaged) to Nancy as a gift.

Immediately, my wife for a while stopped mourning the loss of her shoulder length, red hair — what she describes in my new book, "Rollercoaster: How a man can survive his partner's breast cancer," as "the one part of my body that I have loved unconditionally."

None of the distinctive photos accompany my narrative. Not because Nancy doesn't appreciate them 20 years after her diagnosis and treatment, but simply because I, Woody Weingarten, didn't use any illustrations at all in the book.

Nancy used the six re-imagined, often whimsical photos on a one-page flyer she sent to friends and family members who aided her. She added this text: "Thanks for your helping hands…and your loving heart…during all my changes."

The front of our refrigerator is decorated with two of the images — on magnets. They still make us smile, every day.

And cope.

And remember the ups and downs of the past triggered by passages in "Rollercoaster."

Such as:

• "Her dread of going bald had careened off the charts. Just before turning out the lights she recalled that as a girl with braids down to her waist, she'd panicked when her mother demanded she cut them off."

• "I do wish she could consistently see herself as I do, as a beautiful creature with or without hair."

• Sadness about her missing hair — even though that loss was temporary — remained the biggie for Nancy. A year after her final treatment, she wrote in her journal that it 'was clearly the psychologically devastating part of the cancer."

• It had taken more than two years before she could look at images of her baldness…She agreed at last to put the photos of her hairless stage into two albums…[She] triggered my caregiver button: 'You and I will never see it the same way,' I replied sincerely. 'Your high cheekbones and eyes showed off better when there was no hair to look at. The fact is, you're lovely both ways.'"

Two decades after her breast cancer diagnosis, Nancy's loveliness still makes me tremble.

Even though her hair is draped around her shoulders again.

No. 1 book buyer survived breast cancer HIMself

First 'Rollercoaster' purchaser is male breast cancer survivor and a support group advocate

The very first buyer of my book, "Rollercoaster: How a man can survive his partner's breast cancer," was somewhat of a surprise.

He wasn't a caregiver for his wife. He was a breast cancer patient himself.

One of the unlucky 1 percent.

Gerry Bourguignon, a regular member of the support group that I, Woody Weingarten, have been leading almost 20 years, tells on our website — www.Marin-Man-to-Man.org — of his finding an early-stage small lump in his right breast in 2009.

Gerry Bourguignon

A biopsy showed that surgery, a modified mastectomy, was necessary to remove the tumor.

Eighteen months later, he stopped taking the post-surgical med tamoxifen — it's usually recommended for five years — because of "increasingly painful side effects [that] are generally worse for men compared to women."

But he felt okay — physically.

He needed support, however, and that's why he joined (and still attends) our group.

Gerry, a PhD and retired college prof who splits his time between homes in Pollock Pines and Mill Valley, California, is now on the board of directors of the To Celebrate Life Breast Cancer Foundation — www.tocelebratelife.org — an agency that since 1996 has granted more than $4 million to fund emergency and direct services for breast cancer patients.

Its basic mission is to raise money and give financial aid to other nonprofits that help people living with the disease.

Only 1 percent of all breast cancers occur in men — about 2,400 are diagnosed in the United States annually. That compares with nearly 250,000 women, which translates into roughly one every two minutes.

More than 2 million stateside women live with the chronic disease, and about 40,000 die of it each year.

Daunting statistics, perhaps.

But, as I note in "Rollercoaster," we all must remember that "each person is an individual, not a statistic (and that breast cancer couldn't care less about race, creed, sexual orientation or politics)."

Or, in fact, gender.

Book buoying male caregivers ready in 2 formats

'Rollercoaster' available now, in paperback or Kindle edition, after merely 6,341 updates

Only 20 years in the making.

Only 6,341 tweaks, updates, corrections and other changes before it was "ready for prime time."

Now, as of Nov. 1, 2014, "Rollercoaster: How a man can survive his partner's breast cancer" is available — in either a paperback or Kindle edition.

Amazon, the publishing behemoth, has slightly discounted the print version from my originally established list price of $18.18 (a "life-plus-life" symbolism building on one meaning of the Hebrew word chai).

Woody enjoys "Rollercoaster" proof.

The Kindle price is $9.99, with no symbolism whatsoever.

"Rollercoaster" shows "how a pair of very-human beings overcame their anguish in the wake of relentless medical procedures."

It spotlights tons of lessons that I, Woody Weingarten, learned, and lots of emotions I felt, while leading a men's support group for almost 20 years — and simultaneously dealing with my wife's breast cancer, her treatments and the aftermath.

In the final analysis a love story, "Rollercoaster" also illustrates "that physical and psychological hurdles must be cleared, that strong relationships can help kill not only mutated cells but worries that metastasize."

I'm certain that male caregivers can benefit from reading "Rollercoaster" because, even if they mistakenly believe they require zero help and can fix anything, they, too, need support.

Women who are preoccupied with a life-threatening disease may suggest their husbands, boyfriends, fathers, sons and brothers read it.

Or they may read it themselves to find out what those males are feeling.

"Rollercoaster" includes such wisdom as: "It feels good to let go of anger at doctors for not having instant answers; at pharmaceutical companies for manufacturing life-extending but not necessarily life-saving drugs; at yourself for not having a magic wand."

And, "It's crucial to remember each person is an individual, not a statistic (and that breast cancer couldn't care less about race, creed, sexual orientation or politics)."

Buy a copy (or two or three or…). That'll help me spread the message — that male caregivers can help a great deal but need support.

Like I did.