Overcoming Fear of Family History: Caitlin Kelly

Written By Robin Warshaw, Contributing Writer

For most of her life, Caitlin Kelly was afraid of cancer. Her grandmother died of ovarian cancer at 57. Caitlin’s mother, then 37, was treated for early-stage breast cancer. Twin aunts on her mother’s side both had ovarian cancer and died. A maternal great-aunt died from breast cancer, as did that woman’s daughter.

“Since I was a little girl, there was always the presence of someone being ill,” says Caitlin, 33, who lives in South Portland, Maine.

Caitlin Kelly_for blog

In her teens and 20s, she became aware that changes or mutations in a BRCA1 or BRCA2 gene can run in families, causing higher risks of breast and ovarian cancers. Genetic testing can determine if a woman or man has a BRCA mutation.

Her mother’s diagnosis happened before BRCA testing was available. One aunt later tested positive for a BRCA1 mutation, but her mother thought Caitlin was too young to be tested and have the burden of results weighing on her. Caitlin believes her mother was trying to protect her from discrimination related to genetic information.

As she got older, Caitlin heard that women should start being screened for breast cancer 10 years before the age at which their mothers were diagnosed.

“That would have been when I was 27, but I was too scared,” she says. Having breast cancer or ovarian cancer “was something I thought was probably inevitable but I just wasn’t ready to face.”

Delaying Action

Instead, like many young people, she focused on school and her career. She was close with the aunt who was BRCA-positive and who had lived with ovarian cancer for 6 years, so “when she passed away, it was really difficult for me. I think that contributed to my fear,” she says.

Her mother was diagnosed with breast cancer again when Caitlin was 29. This time, it was in the opposite breast and was a more aggressive type. She tested positive for a BRCA1 mutation.

Caitlin took time off from working as an apparel designer to help her mother in Massachusetts. Her mother’s doctors strongly advised Caitlin to get breast cancer screening and genetic testing. At her mother’s first chemotherapy session, the doctors had a genetic counselor come in to speak with Caitlin.

She did not follow up with the counselor. “I had a really hard time with my mom getting cancer a second time. I couldn’t possibly think about myself,” she says. The pressure from the healthcare professionals made her feel uncomfortable, “even though I know to this day that it’s really great they pushed me.”

About two years later, Caitlin went for her first mammogram. She had early-stage, hormone receptor-positive, HER2-positive breast cancer in one breast. She also tested positive for BRCA1.

Paying for Fertility Preservation

After talking with her surgeon about the characteristics of her cancer, genetic risks and family history, Caitlin decided to have a double mastectomy and reconstruction. The surgeon encouraged her to see a fertility specialist about freezing her eggs before chemotherapy might damage them.

“I had to accept that other people needed to help me.”

Having children hadn’t been in her thoughts. She had just started dating a man two weeks before her diagnosis. They are now in a committed relationship.

Under pressure to act quickly before chemotherapy, she was upset to learn it would cost $6,000 for egg removal plus one year of freezing. “I don’t have that kind of savings and they don’t do the procedure until you pay all of it upfront,” she says.

Independent by nature, Caitlin didn’t like being public about her situation, yet realized “I had to accept that other people needed to help me.” Her mother started a blog to tell friends and family what was going on. That inspired Caitlin’s cousins to set up a GoFundMe page to raise money for egg preservation. The cost of fertility medicines was covered through LIVESTRONG Fertility.

She had 32 eggs extracted and frozen. The eggs can be tested for genetic mutation before being used, a fact Caitlin calls “a silver lining.”

“That means I can hopefully not pass this down to anybody else if I’m blessed with a child,” she says.

In that way, she can help write a new chapter of family history.

Young Doctor, Unexpected Diagnosis: Breck McCarty

Written By Robin Warshaw, Contributing Writer

2015McCarty-Breck_mediumAfter finishing her family medicine residency at age 29, Breck McCarty felt “as if I had been going to school forever.”

That was about to change, as she and her husband-to-be prepared for the next step in their careers: moving from South Dakota to join a medical practice in a small Wyoming town.

When she felt a breast lump, Breck let it go for a few weeks. “It persisted, so I saw a surgeon who was one of our preceptors [teachers] in our training and requested that I get a biopsy.” He told her she was young and he didn’t think it was cancer, but would biopsy it anyway.

“He came to my house to deliver the news,” Breck says.

The new doctor was diagnosed with stage IIA breast cancer. She had a mastectomy just days before moving to Wyoming.

Pregnancy planning

At first, she didn’t think about how treatment might affect her fertility. Then a friend, also a family doctor, asked her about it. “I would not have even thought of it if she hadn’t mentioned it,” Breck says. “I was so overwhelmed.”

She had no children and wanted them in the future. She learned it was important to have fertility preservation, storing embryos or eggs before chemotherapy, to avoid damage. Fertile Hope, now LIVESTRONG Fertility Services, helped Breck get discounted rates for fertility preservation services. She had eggs taken, then embryos created from them and the resulting embryos frozen.

After initial breast cancer treatment, Breck received tamoxifen because her disease was hormone receptor-positive. Tamoxifen cannot be taken while pregnant. She worried whether taking it for 5 years ( 10 years is now recommended) might be too long to wait for pregnancy. She looked for research, joined online groups and talked with other women about her concerns.

“My oncologist was very science- and data-oriented and he did not have scientific information or adequate data to help me,” she says.

After almost 3 years of tamoxifen, she decided to stop and try to get pregnant. She had to wait 3 months for the medicine to leave her body before starting the embryo implantation process. She became pregnant with twins, lost one, but the other did well. Jacob was born in April 2011.

“I chose not to breastfeed and went back on tamoxifen the night I had him,” says Breck.

Second diagnosis

The family moved again, to a larger town and new practice. In 2013, Breck felt a painful nodule on her mastectomy side. “I really wasn’t that concerned, other than it was new.”

She promptly went to a radiologist, who advised a CT scan. Later that day, he showed her and her husband worrisome areas on her liver. A biopsy confirmed she had a metastasis: that the breast cancer had spread to her liver.

“Being a doctor and knowing the statistics, I thought this was about the worst news I could receive. I didn’t anticipate ever getting my life back after that,” she says.

She was referred to an oncologist in another city who specializes in young women. They met a week later, which helped.

“I left her office thinking I would get some semblance of my life back. Having her tell me she has many women living many years with metastatic breast cancer, knowing she was actively seeing women who had lived several years, gave me some hope,” recalls Breck.

She went back on chemotherapy, which shrunk some of the liver tumors, and trastuzumab (Herceptin) for HER2-positive disease. Later, she was switched to a new anti-HER2 medicine, ado-trastuzumab emtansine (Kadcyla), when it received FDA approval. Her uterus and ovaries were surgically removed and she began taking an aromatase inhibitor.

Breck says she found more support after her metastatic diagnosis than the first time. After recurrence, she met another young woman affected by breast cancer and they became close friends. There are no local support groups, but she reaches out to area young women who are diagnosed.

“As a physician, my experience is widely known in the community. All my patients are aware – I never hid anything that was going on,” she says. “Some people come to me because of it.”

Breck has also found – and given – help through Casting for Recovery, other organizations and an international Facebook group for women with metastatic breast cancer. “I try to be there for support and encouraging words,” she says.

PrintThis article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Financial Help for Fertility Preservation: Ryann Chamberlain

Written By Robin Warshaw, Contributing Writer
Reviewed By Andrea Mechanick Braverman, PhD

2015Ryann-Chamberlain_mediumReady to become pregnant at age 33, Ryann Chamberlain began taking prenatal vitamins. She and her husband figured they would “actively try” to have a baby about 3 months after Ryann started taking the vitamins.

Just before reaching that point, she noticed nipple discharge from her right breast.

“At the time, not knowing how prenatal vitamins work, I thought maybe my body was kicking into gear,” says Ryann, who lives in Portland, Maine, and works as a self-employed caterer and as a waitress in an Italian restaurant.

That nipple discharge led to a breast cancer diagnosis at a local hospital. Because Ryann found the diagnostic process there disorganized, her mother suggested she go to a larger cancer center in Boston, about 100 miles away.

Ryann’s new oncologist told her that before beginning breast cancer treatment she needed to consult with a fertility specialist about methods of fertility preservation that would protect her ability to become pregnant at a later date. Chemotherapy and other treatments can damage eggs and cause early menopause.

Her providers back home had not discussed anything about treatment-related infertility with her. “It was the first time it had dawned on me,” Ryann says.

Saving Fertility Before Treatment

If Ryann chose fertility preservation, her doctor would remove eggs from her body before breast cancer treatment, fertilize them with her husband’s sperm and freeze healthy embryos for use later. (Women without a male partner, or whose partner is infertile, may use donor sperm. Freezing unfertilized eggs is also now an option and becoming more available.)

Ryann needed to see a fertility specialist before her next menstrual cycle, and met with one 2 days later, but her period started on the drive home. It was a Friday, so the doctor phoned in a prescription for an injectable medicine to stop her period until Ryann could see her on Monday.

Ryann and her husband wanted time to think about whether they could afford the estimated $12,000 for one fertility preservation cycle,which their health insurance did not cover. With her period starting, they were suddenly under pressure to make a big decision quickly.

“We decided it was better to resent the cost of preserving the ability to have children than to resent not having children,” Ryann says.The big question was: How would they fund that decision?

Quick Help With Costs

The fertility specialist’s office told them about Fertile Hope, an initiative of LIVESTRONG. The group’s Sharing Hope Program for Women provides financial assistance with fertility preservation for women whose cancer treatments could cause infertility.

Fertile Hope arranged for a discounted fee, reducing the charges by $5,000. The couple paid the remainder, about $7,000, with credit cards.

Ryann was put on medicine to hyperstimulate her ovaries so several eggs could be extracted at once. After fertilization with her husband’s sperm, six viable embryos were then frozen.

“I call them ice babies,” says Ryann. “We joke that they’re already named Chase, Visa, Discover, AmEx, MC and Citi.”

Waiting for Treatment Break

In just a little over one month, Ryann went from diagnosis through fertility preservation to surgery for stage I, hormone-positive, HER2 positive breast cancer. She wants to breastfeed, so had a single mastectomy instead of the double she originally considered.

After surgery, treatment included trastuzumab (Herceptin), chemotherapy, leuprolide (Lupron) and a painkiller for joint and muscle pain. She felt “very manic,” had severe temperature changes and other side effects, some of which she thinks were due to the painkiller. She was taken off all medicines, supplements, and vitamins for one month and then went back on tamoxifen and a different pain medicine. Her side effects have since lessened.

Ryann’s doctor wants her on tamoxifen for at least 3 years before stopping to have a baby. Tamoxifen can damage a fetus, so treatment must stop a few months before becoming pregnant.

Now, 2 years after diagnosis, pregnancy is still on a back burner. “I don’t allow myself to think deeply about it,” she says. “It’s very hard when you finally decide you’re ready to have a family and then your world turns upside down and you might not be able to.”

She says it’s a “huge relief” to have the six frozen embryos holding hope for parenthood to come. “I think it would have weighed a lot heavier on my heart if we hadn’t gone through that process.”

But she has met several young women who were diagnosed with breast cancer and not told about fertility preservation before their treatments began.

“I just want to go yell at their doctors,” she says. “There needs to be a shift in patient care from just trying to eradicate the cancer itself to caring for the patient as a whole. Having cancer at any age poses its own challenges, but for young women, fertility issues need to be addressed. It has to become the standard.”

PrintThis article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.