Breast Cancer Survivor
- Diagnosed with breast cancer at age 24 in 2010
- Received fertility treatment and cryopreservation prior to cancer treatment
- Treated with chemotherapy, double mastectomy, radiation therapy, and breast reconstruction
- Expecting first child in November 2013
When you’re 24 years old and practically a newlywed, the last thing you expect to do is fill out a last will and testament with your spouse. But that’s what Sarah Lien had to do with her husband, Kirk, when they learned that Sarah had a fast-growing form of breast cancer.
“My mom had been diagnosed with breast cancer in 1994 when I was nine years old,” Sarah said, explaining that she tried to get a mammogram when she turned 21 and every year after that. But insurance wouldn’t cover it until Sarah turned 27. (Her mother was 37 at her first diagnosis.) The out-of-pocket expense for the screening was prohibitive, so Sarah became diligent about breast self-exams. During one of her weekly exams, Sarah came across a walnut-sized lump.
“I sat on the floor and just cried and cried,” Sarah said. “I knew it was cancer. I called my mom. It was late in the evening, and there wasn’t anything we could do yet, but she was matter-of-fact and told me we’d get it checked out, that everything would be fine.”
Sarah found her lump on Monday, March 8. In a marathon week of appointments, she saw her gynecologist, who confirmed the suspicious lump in her right breast on Tuesday and scheduled her for a consult with a general surgeon as well as a consult at a local breast center in Everett, Wash. On Wednesday, the surgeon found a second smaller lump under Sarah’s right arm. On Thursday, Sarah had an ultrasound, which found a third lump, also under her arm. On Friday, she had biopsies of the lumps and her first—and last—mammogram. “It was quite an emotional week,” Sarah said.
The next week, on Tuesday, March 16, a pathologist confirmed that Sarah had an aggressive breast cancer. “That’s when they told me about the treatment I would need to go through and that it could affect my fertility,” Sarah said. The treatment could send her into early menopause.
Sarah’s oncologist, who had treated Sarah’s mother, too, wanted to start chemotherapy right away. But Sarah needed answers about her fertility first. She’d been married for only two years, and she and Kirk had plans for a large family. A friend helped her locate a fertility clinic willing to see her the next day, Wednesday.
“I consulted with doctors and had some tests done, and they started hormone shots that day just in case everything looked fine for fertility treatments,” Sarah said. “The following day I had to do some more testing and talk about how much the procedure would cost. Our insurance would not cover any of the cost, even though my reason for needing fertility treatments was cancer. The total cost was given, and we had a weekend to come up with thousands of dollars. With the help of loving family and friends, we raised enough money for the treatments!”
That Wednesday, Sarah also had a magnetic resonance imaging (MRI) scan, and on Thursday, she had a positron emission tomography (PET) scan. In between, Sarah had genetic testing, which confirmed she had inherited the BRCA2 genetic mutation that greatly increases breast cancer risk—but from her dad’s side of the family, not her mom’s. Interestingly, her paternal grandfather had been diagnosed with breast cancer just three years before.
On Friday, Sarah and Kirk left on a trip to Maui, a gift from Sarah’s mother’s church and family members, pulled together at the last minute because Sarah wanted to wear her bikini one last time in paradise before she had a double mastectomy.
“I remember bits and pieces from those two weeks, but my thoughts overwhelmed me, and soaking in any more information was just not possible,” Sarah said.
Cryopreservation—Planning for the Future
“When they heard I had cancer, the fertility clinic jumped to help me,” Sarah said. She began fertility treatments on a fast track to complete in just 10 days what normally takes two weeks so she could begin cancer treatment as soon as possible.
“This was around Easter time,” Sarah said, “and the fertility doctor explained that they hoped to be able to harvest about seven to 10 eggs and produce five to seven embryos for us to work with. My mother called me the Easter bunny because they got 21 eggs and 17 embryos!”
The embryos were frozen and stored for Sarah to use at a later date.
The cancer-fighting regimen set by Sarah’s community oncologist began with combination chemotherapy using docetaxel (Taxotere), cyclophosphamide (Cytoxan), and doxorubicin (Adriamycin). She began treatment on March 29 at the cancer clinic where her mother had gone: six doses of chemotherapy over 18 weeks. The treatment was aggressive because Sarah’s cancer was aggressive. Unfortunately, the medications given to ease side effects did not work for her, so Sarah was quite sick.
“It was a little difficult and frustrating at times,” Kirk said of the early days of Sarah’s chemotherapy. Adjusting to a caregiver role at such a young age and so early in their marriage was a challenge. It was difficult to figure out Sarah’s schedule for taking certain medicines. On many days Sarah was too sick to be left alone, so Kirk would take off work to be with her. On other days he would set alarms on his phone for her various medicines and call her from work to remind her to take them.
“I would make plans and then have to cancel them because Sarah would be sick from the chemo,” Kirk said, which was also frustrating for him. He soon realized that this was the path they had to follow for a while. He set aside the thought of living life as they had and put his entire focus on Sarah’s treatment, not worrying about making other plans. “If we were able to spend time with friends or go to the movies, we took it as a blessing. But I tried to never make Sarah feel bad about not being able to do the things we used to,” he said.
The early days of treatment were frustrating in other ways for Sarah and Kirk. “I wasn’t getting answers to lots of my questions about what would happen after chemotherapy. I wanted to talk about surgery and the specifics of what I’d need and what my options were,” Sarah said. “I was repeatedly told not to worry about how I’d look. The important thing was to achieve longevity. But to me how I looked was just as important. As a young, newly married woman, I wanted to feel beautiful, and I had to live with the surgery results for my entire life.”
Sarah took it upon herself to find plastic surgeons to talk to. She found three, but none could answer her questions to her satisfaction or offer more than the current standard of care, which meant long incisions and ugly scars.
No one could tell her what the statistics were for women like her in similar situations. What were the chances for her to live a long life? Could she have children in the future or not? What more could they tell her about outcomes for young women with the gene she had? “They all just said they’d get back to me,” said Sarah, “and even after repeated visits and me repeatedly asking, they never did answer my questions.”
Finding Seattle Cancer Care Alliance
Four weeks after Sarah was diagnosed, she was desperate for someone else to talk to, for a doctor to really hear and address her concerns and try to fulfill her wishes for her treatment. Someone told her about Seattle Cancer Care Alliance (SCCA) and connected her with medical oncologist Larissa Korde, MD, MPH, radiation oncologist Janice Kim, MD, and breast surgeon Kristine Calhoun, MD.
Sarah and Kirk met with her team at SCCA’s Breast Cancer Specialty Center. “They weren’t telling me ‘no’ like the other doctors did,” Sarah said. “They went above and beyond what anyone else had done and agreed to find the research we were looking for.”
Dr. Korde agreed with the chemotherapy regimen Sarah was on already. Dr. Kim had her own ideas about the best course of radiation therapy. Dr. Calhoun recommended a modified radical mastectomy, like the other surgeons had. “That bummed me out,” Sarah said.
Sarah finished her chemotherapy treatment in August, sleeping through nearly the entire last two weeks. “It was that hard on my body,” she said.
The Next Step in Beating Cancer
The next step in Sarah’s treatment after chemotherapy was a double mastectomy at UWMC. The mastectomy on the right side, which involved removing cancerous axillary lymph nodes, was to treat her cancer. Sarah chose to have her left breast removed prophylactically because she had the BRCA mutation.
“While the double mastectomy was not mandatory, it made a great deal of sense in Sarah’s case,” said Dr. Calhoun. “Based on her BRCA status, she had a high risk of ultimately developing a cancer in the other breast at some point, with studies showing that risk can be as high as 40 percent. Sarah decided to remove her noncancerous breast to reduce that risk as much as possible, and after appropriate counseling and discussion of her options, I supported her in that decision.”
Sarah faced surgery with a lot of trepidation. “To lose my breasts so young in my life … to know I’d never have the opportunity to breast feed my children. I questioned would my husband find me attractive anymore, would I recognize myself? It was a hugely emotional time,” she said.
With a waiting room full of her family members, Sarah had her operation in September. Then the plastic surgeon prepared her for reconstructive surgery by putting expanders in place to help ready her skin for breast implants at a later date.
A few days after surgery, Sarah began taking tamoxifen (Nolvadex, Soltamox), a standard anti-estrogen therapy for hormone receptor–positive breast cancers in premenopausal women.
Commuting for Radiation Therapy
In December, Sarah began radiation therapy, five days a week for six weeks, at SCCA. “Even though it was quite a commute for me during my radiation treatments, it was completely worth the time because of the phenomenal care I received,” Sarah said.
But three-quarters of the way through her treatment, her skin started to burn. In the last two weeks of treatment, Sarah had to take a week off from radiation. She and Kirk stayed in a local hotel. The rest time was very helpful, and she made it through the last week of treatment more easily and healed quickly afterward.
Rare Side Effects of Tamoxifen
Unfortunately, Sarah’s challenges weren’t over. Since having surgery and starting tamoxifen, Sarah suffered from severe dehydration, nausea, and chronic pain. Though she took several anti-nausea and pain medications, nothing helped. Finally, after struggling with these issues for 16 months, she decided to stop taking all of her medications—tamoxifen included—just to see if she could feel better. Within three days, Sarah’s nausea and pain were gone. In very rare instances, a person may be allergic to tamoxifen. It turns out Sarah is one of those rare people. Once she was off tamoxifen, her symptoms went away, and she no longer needed the other medicines.
“It seemed like everything I did, I had the worst response,” Sarah said. “It is incredibly important to listen to your body and your intuition.” As with her breast self-exams, Sarah has been alert to changes in her body and has been her own advocate throughout her care.
“Trust your doctors, but do your own research, and if needed have a second or third opinion,” Sarah recommends. “It is your life, and you must feel confident in your care and treatment.”
Happily Ever After
Sarah went in for reconstructive surgery one year after her mastectomy, in September 2011. It was a long time to have breast expanders in place, but she wanted to give her skin, her body, and her mind time to heal before facing surgery again.
Sarah and Kirk thought strongly about moving to Hawaii after her treatment and surgeries were complete. As they prepared to relocate, her mother’s cancer returned once again, and the idea of moving away from the Pacific Northwest was tabled.
“We couldn’t just leave,” Kirk said.
“When we told my mom that we wouldn’t be moving, she wanted us to go and have our adventure but said if we were staying, we’d better get to baby making,” Sarah laughed, remembering their conversation.
In March 2013, three years after her cancer diagnosis, Sarah and Kirk worked with the fertility clinic, and with one of their cryopreserved embryos Sarah became pregnant. They are expecting their “miracle baby,” a girl, in November 2013.
Sarah documented her entire cancer experience in a blog and offers the URL to anyone interested in reading more details about her life during those years: sarahshope2010.blogspot.com.
“I hope my story will help others know that there is hope during cancer and life after cancer,” she said.