'A Lifelong Journey' - Breast Cancer Awareness Month an important reminder

PHOTO: Congregation Neveh Shalom Assistant Executive Director Michelle Caplan, a breast cancer survivor, sports pink ribbon fingernail paint in recognition of Breast Cancer Awareness Month. (Rockne Roll/The Jewish Review)

The Jewish Review
October is Breast Cancer Awareness Month. According to the World Health Organization, 25 percent of cancers diagnosed in women will be breast cancer. Approximately one in eight women will develop breast cancer in her lifetime, per the American Cancer Society.
Michelle Caplan, Marlene Edenzon, and Becky Ewer were each the one in eight. All three are alive and well today thanks, they all say, to early detection.
Caplan, the Assistant Executive Director at Congregation Neveh Shalom had a grandmother and two aunts who battled breast cancer.
“It was something in my head that I knew that I needed to regularly get checked,” she said.
A mammogram in October of 2015 was clean, but during a routine physical six months later, her doctor paused during the breast exam portion. 
“She suddenly says, ‘Do you feel that?’” Caplan recalled. “And I said, ‘Well, now that you mentioned it, yes, I do.’”
Becky Ewer, the Marketing and Creative Director for the Mittleman Jewish Community Center and Portland Jewish Academy, had a similar experience – her physician found a lump during a routine exam. 
“She just thought like, ‘oh, that’s nothing’ because I was only 35,” Ewer recalled.
Nevertheless, they investigated further. A mammogram was negative, but subsequent ultrasound and biopsy found the tumor. Ewer had just gotten engaged. 
Marlene Edenzon, Neveh Shalom’s Executive Director, found her own – a self-exam unearthed a suspicious region that further testing revealed to be cancerous. She received her diagnosis on Thanksgiving Day.
“Anytime you hear the word ‘cancer,’” she said, “it’s a moment where everything else shuts down for you.”
For Ashkenazi Jewish women, genetics is an extra issue when it comes to breast cancer.
Mutations in what are known as the BRCA1 and 2 genes are associated with a 60 percent lifetime chance of developing breast cancer, as well as increased risk of ovarian cancer and with aggressive forms of prostate cancer in men as well as pancreatic cancer across sexes. These mutations are present in approximately one in 400 American adults, but that frequency is 10 times higher in the Ashkenazi population.
Stephanie Goettl, a genetic counselor with Oregon Health and Science University in Portland, encourages people who have higher risk factors for BRCA mutations, including Ashkenazi Jews, who have a family history of cancer to speak to their primary care provider about genetic testing and counseling. The procedure is as simple as a blood draw or a saliva swab. 
“We have pretty good luck with having insurance cover genetic testing, especially when people meet the criteria,” Goettl said. “Probably about 90 percent of people end up paying. $100 or less for testing.”
For those who wouldn’t otherwise qualify, the Healthy Oregon Project offers free testing for 30 genetic disease risk factors, including both BRCA mutations, for free as part of an ongoing research project at OHSU. More information is available at Healthyoregonproject.com. 
Ewer, Edenzon and Caplan were all negative for BRCA mutations. All three had surgery to treat their cancer. Caplan needed a mastectomy, where the entire breast is removed. She elected to have both breasts removed at the time – a double mastectomy.
I don’t want to be always looking over my shoulder, thinking ‘When is it going to happen on the other side?’” she said.
Ewer had a lumpectomy, but the surgeon didn’t achieve satisfactory results, so she went back under the knife to have a mastectomy. In between the two breast surgeries, she had eggs harvested because her post-surgical treatment involved chemotherapy drugs that would potentially damage those eggs. Today, women undergoing egg harvesting have an 80 percent chance of being able to have a child successfully; when Ewer was diagnosed, that number was closer to 30 percent.
“We were like presented with this crazy news that I might not have any fertility after I got through the treatments,” she recalled.
While Edenzon avoided chemotherapy after her surgery, she had to endure eight weeks of daily radiation treatments that “knocked the crap out” of her.
“Radiation was the most challenging for me,” she elaborated. “I burned severely and had skin grafting done afterwards. Because of where my cancer was on my left side, up high, you have heart and lungs right there, they’re not into radiating hearts and lungs, so they had to create a prosthesis.”
Something akin to a miniature shielding apron from a dentist office was implanted to protect Edenzon’s heart and lungs and hold the cancer in place for the radiation. 
“It’s cumulative,” she said of the effects of the radiation treatment. “Suddenly you wake up one morning and go, ‘I just can’t drag myself out of bed.’”
Edenzon was living in Los Angeles at the time and credits her community with getting her through the process.
“[I] had access to lots of doctors, lots of knowledge, lots of information which is very helpful, but more than anything the support the meals, the visits, the willingness to drive you, take you and sit with you,” she said. “Those were the moments that made a difference.”
Ewer had significant side effects from post-surgical treatment, but credits the MJCC and PJA with supporting her with a flexible work schedule. 
“At the time nobody worked from home,” she recalled. “I took one week off every round and I had four rounds and they were just worked with me and were super supportive for me to be able to do that.”
Her egg harvesting was successful – she had one child with a surrogate and later was able to carry a child herself – and recently completed the last of her long-term hormone treatments to prevent recurrence. 
Caplan appreciated the support she received from her then-employer, Nike, but particularly thanked the Neveh Shalom community, where she was a member before rejoining the staff, for lifting her and her family up through her treatment. 
“I have a few friends that you know came with me to appointments throughout that period,” she said. “For me and for my husband, it was important for us to be able to talk about it because it was how we were processing it.” 
Caplan blogged extensively about her experience and became involved with Breast Friends and Fighting Pretty, two national organizations that support breast cancer patients. She’s become something of a resource herself – she mentioned that she frequently gets phone calls from women in Portland’s Jewish (and non-Jewish) community who have been recently diagnosed. Sharsheret, the Jewish Breast and Ovarian Cancer Community, has a variety of resources about breast cancer, BRCA gene mutations, and more at sharsheret.org. 
“You have to be an advocate for yourself,” Caplan said. “So I really push people to use those resources to pull them in because that makes all the difference in the world to know that you’re not alone.”
While she remains cancer free, Caplan said her illness will always be a part of her life.
“It’s a llifelong journey because it’s always going to be part of who I am,” she said. “It has become easier. I don’t feel as anxious about it as I did for the first few years. But it’s always there.”
All three women emphasized the importance of mammograms and check-ups to spot the disease early. 
“It was really lucky because if she hadn’t felt that,” Ewer said referring to the exam where her doctor found her cancer, “I probably wouldn’t have felt it and we would have been a year or two later and then that would have been a different story.”


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