Holiday phone calls. Birthday phone calls. These were the times when Jessica German could count on contact from her older half-sister, Rhiannon German.
Rhiannon, who had a lifetime history of psychological illnesses, bounced around the country, never quite finding her place. Often, she was homeless or in some sort of real or imagined trouble that might inspire another call back to her sister in Roanoke.
Real or imagined trouble is what Jessica German thought inspired the message she received about two years ago.
“She called me and said, you need to call me back, I have something really important to tell you,” Jessica German remembered. “And of course, I feel awful to think this now, but I was like, oh god, what is it this time?”
It was breast cancer. Stage 4. It had metastasized to her liver and lungs. Rhiannon was homeless, with no insurance. All doctors in Arizona could do for her at that point was relieve her symptoms. She died nine days after calling her sister. She was 38.
The women’s paternal grandmother had also suffered breast cancer. Jessica German, who calls herself a worrier by nature, had already been troubled by a non-cancerous cyst. This, however, was a series of red flags, she said — two women on the same side of the family, both diagnosed with breast cancer before 50.
German, a dental assistant whose mother is a nurse, studied her insurance and knew what to do. She had access to genetic testing, and she took advantage.
The news wasn’t good. It showed an NBN gene mutation.
“I turned up positive for a genetic marker directly linked to breast cancer,” German said.
Her next decision was one that an increasing number of women are making in this era of genetic testing. She had a preventive double mastectomy on June 26 at Carilion Roanoke Memorial Hospital. On Sept. 28, she had reconstructive surgery.
There is a 12-percent lifetime risk of breast cancer for all women. The NBN mutation presents a higher risk, according to multiple studies. Post-surgery, German said, her doctors told her that her risk is 5 percent.
“I didn’t want to have that hanging over my head,” German, 36, said. “I figured this will be difficult, but when it’s over, it’s over, and … I can just live the rest of my life and not always have this in the back of my mind.”
According to the Susan G. Komen Breast Cancer Foundation’s website, a so-called bilateral prophylactic mastectomy lowers by at least 90 percent the risk of the disease in women at high risk. Mutations in these genes — BRCA1, BRCA2, ATM, CDH1, PALB2, PTEN, TP53 — signal high risk, according to the Komen site. For women with a family history of breast cancer similar to German’s, the surgery can reduce the risk by up to 90 percent, according to the National Institutes of Health’s cancer.gov website.
It’s not an unusual choice nowadays. A paper published by the Agency for Healthcare Research and Quality says that between 2005 and 2013, the mastectomy rate increased 21 percent, from 74 to 90 per 100,000 adult women. The combined inpatient and outpatient rate of double mastectomies tripled, going from 10 to 29.7 per 100,000 adult women, while single mastectomies among women already diagnosed with breast cancer continued at about the same rate, 64 per 100,000.
Bilateral mastectomies in those results include preventive surgeries and operations for women diagnosed with cancer in one breast who choose to have both removed.
As soon as German scheduled her initial surgery, she went to social media with the news, in large part to spread information about everything from family history to genetic testing to the surgery itself.
If it hadn’t been for her sister’s call, German said, she would never have considered taking the steps she has taken. She would have had the benign cyst drained and moved on with her life.
“The thing that scares me is, the standard of care is that women aren’t getting mammograms until they turn 40, and there’s so many women who have genetic mutations, who have breast cancer, who are in their 20s, in their 30s,” she said. “It’s just the awareness. People need to know they’re at risk. People need to know their family history. They need to know these things. You can save your own life.”
Health care costs are a frightening prospect for people in any medical situation. German said that her insurance covered her because she is a high-risk patient undergoing a medically necessary procedure. The Affordable Care Act covers it as well.
“I got my first bill this week,” German said in a late September interview. “The out-of-pocket was my hospital visit co-pay. The original surgery [could have cost] over $87,000.”
The genetic counseling also had been covered, as she fit the risk factors required.
German said that one of her goals is to show people that it is not a “cosmetic surgery.” A surprising number of people think it is, she and her husband of about six months, Kevin Ohanian, said.
“Of course I’ve heard a couple of the, oh, what, did you get a free boob job?” German said. “Or, are you getting an upgrade? I don’t even know if they’re meant the way they sound, but it’s in really poor taste. I don’t think they really know what it actually is that I’m doing.
“It’s so far from a boob job, it’s not even funny.”
She said the surgeries were her only good choice, since a diagnosis of osteoporosis (which has been held in check with medication) precluded either a hysterectomy or certain drug therapies. Having twice-yearly MRIs and in essence waiting to receive a cancer diagnosis would not do, either, she said.
“I can tell you that it was absolutely not a fun process,” she said. “But I couldn’t even imagine having to go through this and also having to deal with chemo and radiation. I feel very blessed that I got to do it on my terms, and while I’m young, while I’m healthy, while I can recover easily, than wait until I’m sick, and then it’s just that much worse.”
Her circle of friends and family support has been unflagging, though, she said. The initial surgery included not only the mastectomy but the insertion of tissue expanders to prepare her for reconstruction, and drains to collect post-surgery fluids. She was in severe pain, unable to complete the simplest tasks during the first couple of weeks.
Her mother showed up daily to help her shower and wash her hair. Her friend Tracy Morris took her to a downtown Roanoke salon to get her hair washed and styled.
“She came and got me, and away we went,” German said. “They shampooed my hair, and boy, I felt like a million bucks, for about 20 minutes. Then I was ready to go lay down again.”
Other friends took days off to hang out and watch TV with her. But she was back at work after two-and-a-half weeks — with one drain still remaining, due to a hematoma.
“I had to pin it to the inside of my scrubs so no one would see it,” she said. “I was afraid it was going to gross people out. I just tried to pretend like everything was cool, and go out and smile and say hi, how are you? Come on back.”
Even after the pain of surgery wore off and she regained strength, the expanders, which were filled with saline over the weeks between her surgeries, provided constant discomfort.
“It feels like I have an underwire bra built into my chest,” she said. “They call it the iron bra. Even if you have nothing on, it feels like you’re just being squeezed all the time.”
She said that even though she experienced pain after the second surgery, the expanders’ removal provided great relief.
Through it all, she relied on a virtual community of women using the hashtag “previvor” to signal their own journeys.
“As I’ve gone through this process, I’ve really found comfort in the community of women I’ve met, mainly through Instagram, the girls that are going through the same things as me,” she said. “I get up in the morning and I look for their posts to see how they’re doing and ... all these things that nobody understands.
“It’s so nice to have that support system. ... We message each other back and forth. We uplift each other and we support each other. It’s invaluable to me. Unless you’ve done it, you really don’t understand. Obviously, it’s a huge physical change, but emotionally, mentally, it’s very difficult.”
She and Ohanian have been together for about two-and-a-half years, after meeting at a Dr Pepper Park concert. They joked during the interview about how he brought a TV into their bedroom while she recovered, so he could play “Call of Duty” on his Xbox and still be there if she needed something.
“I finally said, take that TV out of here,” she said, laughing. “I’ll text you if I need you. How about that?”
For Ohanian, the hardest part was knowing what to say to her.
“Mentally, I know what she’s going through, but I don’t,” he said. “I was there for her, to comfort her. But I couldn’t say I can imagine, because I can’t.”
“What flashed back to my head is her sister. It breaks my heart.”
Rhiannon German’s first name came from Stevie Nicks' hit with Fleetwood Mac, “Rhiannon.” As Jessica German and Ohanian pulled into Carilion Clinic Community Care for her second surgery, “Rhiannon” the song came on the radio.
“Wild, huh?” she wrote in an email exchange.
She had reflected on her mostly estranged sister’s role in her life during the September interview, before the reconstructive surgery.
“It’s a terrible thing that happened,” Jessica German said. “But it’s a gift from her.”