Wednesday was a significant day in Raychel Kubby Adler’s life.
It marked not just a birthday — No. 39 — but also the second anniversary of the week she underwent a prophylactic bilateral mastectomy, a surgery that cut her likelihood of developing breast cancer from 87 percent to 2 percent.
To celebrate that exceptional improvement in her odds, as well as to raise funds for women going through what she’s experienced, Adler spent Wednesday morning spinning at the Davis Athletic Club with people who’d paid $50 apiece for the privilege of sweating out an hour and a half on a stationary bike.
All of the funds raised will go to FORCE: Facing Our Risk of Cancer Empowered, an organization that Adler says helped save her life.
Adler has the BRAC2 gene, a mutation that has stalked the women in her family for years, leading to her sister’s death from metastasized breast cancer two years ago, and likely her mother’s death before that. She, too, had breast cancer, but was never tested for the gene.
Adler herself is a warm, cheerful mother of two, well known in Davis for, among other things, the popular spinning class she teaches at DAC and the communitywide parent education programs she’s helped organize in recent years. She’s happily married with two young daughters.
But until she underwent that surgery two years ago, she says, “I lived with a target on my chest.”
When Adler’s mother was diagnosed with breast cancer in her 60s, there were, Adler says, “no red flags.”
“Given her age, it wasn’t super surprising,” she says.
But when Adler’s sister, Lisa Kubby, was diagnosed with breast cancer just 18 months later at the age of 36, Adler thought, “Hmmm.”
Eight years later, Kubby tested positive for the breast cancer gene, after the cancer was found in her other breast.
In hindsight, now that she’s learned so much more about the BRAC mutations, it’s not as surprising to Adler. Because she and her family are of Ashkenazi Jewish descent, they were at a significantly higher risk of carrying the gene than most women — a 1 in 40 chance, in fact. For the general population, the odds are more like 1 in 800.
And with that gene came the much higher chance of developing breast and ovarian cancer, often at a much younger age.
Lisa Kubby urged her sister to take the genetic test, but Adler, who is 16 years younger than her sister and was a college student when Kubby was first diagnosed, deferred.
“She started pushing me really hard,” Adler said. “But I waited and waited because I was not yet ready to face the consequences of what a positive result might mean at that point.
“If you see a picture of my sister, how we look exactly the same, like we could be twins, I was sure I had (the gene) too,” Adler said. “But it’s such a hard thing, because once you have that positive result, you know your risk of breast cancer is 87 percent. I just wasn’t ready.”
So Adler waited. She was checked early and often, getting her first mammogram at the age of 26, but she also married and started a family. From 2003 to 2008, she says, “I was either pregnant or nursing.”
In 2006, Lisa Kubby learned her cancer had metastasized to her brain and bones and she was more concerned than ever that Adler be tested, too.
“I promised her I would be tested,” Adler said. “I wanted to be able to tell my sister (I had been tested) before she died.”
So in 2008, Adler met with Maude Blundell, a genetic counselor with Sutter Cancer Center.
There are generally two groups of patients who see Blundell about being tested for the BRAC1 and BRAC2 genes: those who have already been diagnosed with breast or ovarian cancer, usually at a young age, which puts them at higher risk for carrying the gene; and those like Adler, who are cancer-free, but possess certain risk factors. In Adler’s case, because her sister carried the BRAC2 gene, her odds of having it as well were 50-50, Blundell said.
For those already diagnosed, Blundell said, “probably 90 percent elect to do the test. They’ll say, ‘There is nothing you can tell me that isn’t any worse than what I’ve already heard.’
“For the people who haven’t been diagnosed yet, it has a different kind of impact,” she said. “Once you’ve done the testing, there’s no going back.”
After Adler underwent the test — a simple blood draw — she enjoyed what she calls a brief lull until Blundell’s call came a couple of weeks later.
“It was kind of a sweet time, because I knew I was doing something about it, but I could still live in a fantasy,” she said.
The fantasy was short-lived, of course, ending when Adler returned to Blundell’s office for her test results. It was much as she expected.
“I really never had a moment of thinking I didn’t have the gene,” she said.
But now that she knew for sure, decisions had to be made. There were basically three options: intensive monitoring, requiring a mammogram and MRI every year; going on a powerful drug like Tamoxifen, which would require removal of her ovaries to make her post-menopausal; or surgery.
She initially went with the first option.
“We thought we could do that, but it was terrible,” Adler said. “The waiting and waiting for results was so stressful. It was taking all of my reserves … waiting to see which test would come back positive.”
Option No. 2 was out — she didn’t want her ovaries removed until she was 40.
So option No. 3 it was: a prophylactic bilateral mastectomy.
Adler began researching doctors and procedures. She finally settled on a DIEP flap, a reconstruction using her own abdominal tissue and fat to rebuild her breasts. There were drawbacks: It’s an intensive surgery — eight to 10 hours on the operating table — with a long recovery. And, only a couple of doctors in the country performed it. Still, she settled on the surgery, found a surgeon in San Francisco, and scheduled the operation for December 2008.
But in November of that year, her sister’s health took a turn for the worse and Adler headed to the East Coast to be with her. She told her sister’s doctor about the surgery scheduled for December, and he recommended she postpone. Adler was glad she did. Lisa Kubby died in December at the age of 52, leaving behind two sons.
Before Lisa Kubby died, Adler was able to tell her that she was going to have the surgery, and she knew that provided her dying sister some solace.
“She wanted to save me,” Adler said, “She told me, ‘If I know you’re going to be OK, and you can be there for my boys…’ there would be some peace for her.”
Adler came home and rescheduled the surgery for March 2009.
“Part of grieving for my sister and my mom was doing something differently,” she said. “Doing the surgery meant I could have a life.”
While the initial surgery went well, and doctors found no evidence of any cancer anywhere, the recovery proved much more difficult than Adler ever imagined it would, with an initial infection leading to a year’s worth of follow-up hospitalizations and surgeries and three months without full reconstruction.
“Self-esteem wise, it was very challenging,” she says.
But even with all the complications, she adds, “I would do it all over again.”
“I’ve carried this burden since college,” Adler explains. “I felt like I had a target on my chest. Now I don’t live in the fear that I did. I’ve done what I can do for myself.”
And now she wants to give back.
“My sister gave me this gift and what I can do now is help other people,” she said. “Advocacy and sharing my story is what I can do, raising awareness about genetic risks.”
She’s raising funds as well, specifically for FORCE, “the only organization helping people with genetic cancers,” she said.
FORCE not only funds research but also provides local support and outreach, a lifeline for women when they need it most.
So for now, that’s where Adler plans to focus her time and energy — for the women out there like her, and for her own two daughters.
She’ll also be teaching her spinning class, and her many fans, including all those who were there for her fundraiser on Wednesday, are glad of that.
“If I’m feeling low or tired,” said class regular Lisa Baskin Wright, “I go to her class and leave with the most amazing sense of accomplishment. She’s been through such a tough ordeal, but instead of taking the ‘life sucks, woe is me,’ approach, she remains so positive, her attitude so remarkable.
“Everybody who goes (to her class) feels exactly the way I do. There is just something special about her.”
In the meantime, Adler’s own journey is not completely done. It’s recommended that she still have her ovaries removed, which she plans to do after her 40th birthday.
“But this,” she says, “is my year of no surgery.”
Adler is now the volunteer outreach coordinator for FORCE in the Sacramento area. Visit the local group’s website at http://facingourrisk.org/sacramento.
Even those who didn’t participate in the DAC spinning fundraiser can still give. Donations can be made online at: http://www.firstgiving.com/fundraiser/raychel-adler/may-the-force-be-with-you-spinning-fundraiser?fge=ask.
— Reach Anne Ternus-Bellamy at [email protected] or (530) 747-8051.
When Pam Mari received a call in June that something suspicious had turned up on her recent mammogram, she was more irritated than anything else.
“I’d been called back in before and it was always nothing,” said Mari, director of student services for the Davis school district. “I felt quite inconvenienced actually, and was in a bit of snit when I went back in.”
But this time it turned out to be something after all, and Mari ended up grateful it was caught so early.
“They literally caught the cancer at the cellular level,” she noted, and because of that, she had many more options for treatment than had the breast cancer been more advanced.
“A very good reason for early detection is that you get options,” she noted. “Later down the line, there just aren’t as many.”
Her first choice, a lumpectomy, didn’t work out because of the cancer’s location, so she ended up having a mastectomy and will take the drug Tamoxifen for the next five years. But she avoided radiation and chemotherapy, and her prognosis is very good, with just a 5 percent chance of recurrence.
Between mid-July and mid-January, Mari missed just about a month of work and was able to work from home as well. Now she’s spreading the word to everyone she knows — and for good reason. At least one friend took heed and learned she had a dangerous form of the cancer earlier than she otherwise would have.
“Everyone ran out for mammograms,” Mari said. “On the one hand, it’s a private ordeal. But on the other hand, it’s an epidemic, and we need to help each other take care of ourselves. So if talking about it means that people will have regular checkups, let’s talk about it.”
Mari believes her breast cancer likely was the result of her prolonged use of hormone replacement therapy, begun following her bout with bone cancer 20 years ago. HRT was long believed to help with bone density and Mari was expecting to take it for the rest of her life. But now it’s linked to breast cancer as well.
Mari figures the bone cancer two decades ago and the breast cancer last year are “one big event.”
And getting through both, she said, required the love of family and friends.
“The power of support systems cannot be overstated. Knowing the people you work with want you to come back to work, and that your family is there at the drop of the hat mean everything, as does knowing the work you do is the best possible thing you could be doing for your life’s work,” she said.
“Bone cancer 20 years ago took me from being a very physically active person to a disabled person in a day,” said Mari, who uses a cane. “It changed everything.”
This bout of cancer was different, she said: “This is much more personal, but it will lead me to better places.
“You can say ‘Why me?’ Or you can say, ‘How is this a conduit to greater meaning in my life?’ ”