Breastfeeding After Mastectomy: Katie Benson

Written By Robin Warshaw, Contributing Writer

20160525 Katie Benson 1.jpgAs a teenager, Katie Benson was told she would have trouble getting pregnant. She had endometriosis, a condition in which cells from the lining of the uterus travel and grow elsewhere. Endometriosis causes pain, cramping and, often, infertility.

“The doctor told me if I didn’t get pregnant by 30, it wouldn’t happen,” she says.

Fast-forward to Katie at age 31, living in Winterville, North Carolina. She and her husband had been trying for a pregnancy, with no success.

Then a pain in her breast sent Katie to the doctor. Testing showed she had ductal carcinoma in situ, or DCIS, in her left breast. Although noninvasive, DCIS can become invasive breast cancer.

The DCIS grew from 3 centimeters at diagnosis to 6 centimeters when she had surgery three weeks later. Her doctor recommended a single mastectomy due to the size and location of the tumor. She had no other treatment.

Afterwards, her first question was, “Am I cleared to get pregnant?” Her surgeon and oncologist told her to go for it.

Pregnancy Challenges

Four months later, Katie was pregnant. “When I actually saw the little home test [showing she was pregnant], it was such a shock!” she says.

The next shock was even greater. At her first ultrasound, she looked at the screen and saw two rib cages. She was having twins.

Everything went smoothly until week 34 of the usual 40-week pregnancy. Lab tests showed Katie had preeclampsia, a complication of pregnancy that causes high blood pressure. Often, women with preeclampsia are forced to deliver the baby early. She also had HELLP syndrome, a dangerous condition in pregnancy that can cause stroke and death.

Katie was immediately hospitalized. When she realized the early delivery meant the babies would be born on the one-year anniversary of her DCIS diagnosis, she begged doctors to delay. “I was very upset,” she says. “I thought they [the twins] would be marked by cancer.”

The birth was not delayed and went safely for mother and infants, a girl and boy delivered by Caesarean section. As they recovered in the hospital, there was much more to think about. Katie wanted to breastfeed. But because of her mastectomy, she faced another challenge: Two babies. One breast.

Even women with two breasts find it challenging to nurse twins. Each baby needs to be fed from 7 to 12 times a day, depending on age, which can be hard on the mother’s breasts. Her one breast was going to have to work hard.

20160525 Katie Benson 2

Adapting to Breastfeeding

Before she knew she was having twins, Katie worried about how to breastfeed with only one breast. In general, women with two breasts alternate sides during feedings, to reduce wear-and-tear on the nipples and help both breasts to keep producing milk.

Katie’s concern multiplied when she learned there would be two babies. Then a good friend reassured her. No one could expect her to breastfeed two babies perfectly. “Just do the best you can,” her friend said. Those words comforted Katie.

She rented a hospital-grade pump to get as much milk from her one breast as possible. The babies started on three-quarters breast milk and one-quarter formula.

Even with the better pump it wasn’t easy. “For one thing, it hurt like nothing else because everything had to come from that nipple,” Katie says. She struggled with the awkwardness of being right-handed and feeding only from the right breast. Because she and her husband worked opposite shifts, she often had one baby at her breast and one in her lap, with a bottle.

She went back to work when the babies were 7 weeks old, but pumped there as well as at home. She was determined to give the babies the health benefits of her breast milk, in part because she felt guilty about them having been born early. Breastfeeding, she says, was “something I [could] provide for them.’”

Sorting It Out

Katie, now 34, remembers the stress she felt about breastfeeding and how she accepted what was possible. Instead of aiming for the “exclusively breastfeeding” standard that many women feel pressured to achieve, Katie told people she was “inclusively breastfeeding.” That phrase, to her, avoided “all the strife” that nursing can pose for new moms. Even for those with two breasts.

“Breastfeeding is so rocked with all these emotions. The nice thing about breastfeeding after mastectomy is…I wanted to give it my best, but [knew], no matter what, I’m gonna have to do formula,” she says.

The twins are now 2 years old and thriving. As time passed, Katie began to see the timing of their birth and her 1-year “cancerversary” not as a bad sign, but as a way of showing things could become better.

“It was incredible that I had never gotten pregnant before, but that after this diagnosis I did,” she says. “I prayed for a miracle and I got two.”

This 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.

Mistaken Signs Really Paget Disease: Christina Ihfe

Written By Robin Warshaw, Contributing Writer
Reviewed By Anees B. Chagpar, MD, MSc, MPH
IhfeThe rash on Christina Ihfe’s left nipple was as stubborn as it was painful. Her doctor diagnosed it as a fungal infection and recommended a variety of creams and medicines over 6 months. Still, the rash wasn’t healing.

Christina, then 33, had a busy job selling data equipment. Her work involved lots of cross-country traveling. The rash caused extremely sharp pain that interfered with her job and she was fired for missing so much time. Two weeks later, to figure out what the rash was, Christina’s doctor sent her for a nipple biopsy.

The biopsy surgeon told her she had Paget disease, without really explaining what that meant. “When they tell you it’s a disease and they’re not using the ‘C’ word, it doesn’t sound so bad,” Christina says.

She looked up Paget disease online. “I then started asking questions, [and freaked out] a little bit,” she says. She lives in Windsor, Colorado, a town with about 20,000 residents. “Nobody around here had even heard of it.”

A Rare Diagnosis

Paget disease of the breast, sometimes called Paget’s disease, is a rare form of breast cancer. It affects the nipple skin and, often, the areola, the darker area around the nipple.

It may cause the nipple to flatten, and itching, redness, yellow discharge or flaking or crusting of the skin on the nipple. As in Christina’s situation, Paget disease symptoms can be mistaken for benign skin problems, which delays correct diagnosis.

In Paget disease, breast cancer cells travel from a tumor in the breast into the skin. About 1 to 4 percent of all breast cancers involve Paget disease. How it develops is not clearly understood. Other types of Paget disease occur elsewhere and are not related.

Christina was diagnosed with stage III, hormone receptor-negative, HER2-positive breast cancer. Because she had large breasts and she could not have reconstruction to match that size, she decided to have a double mastectomy and reconstruction with implants so that her breasts would be equal in size, although smaller.

“That was another hard thing to take, knowing I could never be what I was,” she says.

Treatment Problems

After surgery, Christina had 15 rounds of chemotherapy and treatment with trastuzumab [Herceptin], a HER2 targeted therapy. At the same time, she received leuprolide (Lupron) to suppress ovarian function.

She had joint pain in her hips, knees and shoulders but couldn’t tell which medicine was causing it. “It was so painful I wasn’t able to go up and down stairs in my house,” she says.

An infection in her surgical drains resulted in removal of her left breast implant. Her plastic surgeon said Christina would have to delay further reconstruction until after her 32 radiation sessions. In all, it took 8 surgeries to complete her reconstruction.

Christina’s experience was tough on her 13-year-old son, who was accustomed to her being active. “It was quite a difficult time for him,” she says, “although he was always helpful.” She also gained support from her boyfriend, who was “the driver, the listener, the everything.”

Looking Ahead

While struggling with the impact of treatment, Christina was unable to work. She collected unemployment compensation for a short time, then used her savings, which dwindled quickly. When her doctors said she couldn’t work for some time, she applied for disability benefits but was denied. Two years later, she’s still trying to get a hearing to appeal her case.

She looked for emotional support locally but felt out of place in a breast cancer support group comprised of well-meaning but older women. Christina found LBBC online and became interested in sharing its resources with younger women in her area.

She attended LBBC’s Young Advocate training and stays connected with others she met there. “Whatever kind of day you’re having, they understand,” she says. She appreciated hearing about work, insurance and finances at the training from Triage Cancer and wants to include those issues in her advocacy efforts.

Christina now focuses on survivorship – her own and that of other young women. She brings LBBC materials to local events and talks to people. Her message, she says, is for young women to listen to their bodies and be heard.

“For 6 months, I knew something wasn’t right and I kept going until I got an answer,” she says. “You have to be responsible to take care of yourself.”


This 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.

Navigating for Herself and Others: Sarah Iwanski

Written By Robin Warshaw, Contributing Writer

Sarah Iwanski, of Pooler, Georgia, is proud of her reputation as a squeaky wheel. “I squeak a lot until people hear me,” she says.

That skill has served her well since early 2013, shortly after her second child was born. Sarah, who has a genetic blood disorder known as hereditary hemorrhagic telangiectasia, or HHT, was sent for a chest scan. Her doctors wanted to make sure the pregnancy hadn’t caused HHT-related lung problems.

The test showed her lungs were fine. The radiologist noted one lymph node was barely enlarged and told her it was nothing to worry about. Sarah, who was 29 and breast-feeding an infant, then went to her obstetrician/gynecologist. She was sent for an ultrasound that found the node was probably benign.

Still, Sarah was not satisfied. Because she was a medical technologist at a local hospital, she consulted an oncologist she knew. He didn’t think the node was a problem, either, but agreed to send her for a biopsy. It showed what no doctor had detected: Sarah had stage IIIA breast cancer. The disease was in her milk ducts but hadn’t formed a tumor that could be felt, especially in a nursing mother’s breast.

image1

“If I [had not questioned] my healthcare providers and advocate[d] for myself, then I probably would not be alive now,” says Sarah. “I have a medical background and worked in a hospital. Women without that experience and without confidence to challenge their doctors are at a severe disadvantage.”

Joining Clinical Trials

Sarah was diagnosed with hormone receptor-negative, HER2-positive breast cancer. She had a mastectomy, chemotherapy, trastuzumab (Herceptin) for a year and 30 rounds of radiation. She also set out to find clinical trials for further treatment because there are no long-term treatments for the type of disease she has. “The more clinical trials I can find, the more [I feel] I’m actively doing [something] to stick around,” she says.

She thought a vaccine therapy trial could benefit her, so searched online at breastcancertrials.org and clinicaltrials.org.

Vaccine therapies are treatments that stimulate the immune system to destroy cancer cells.

After finishing trastuzumab and radiation, and while undergoing reconstructive surgeries, Sarah joined a trial for a vaccine that might work against HER2. The trial site was in Virginia, an 8-hour drive from her home. She made the trip for an initial exam and then 12 more times over a 3-month period, to receive the vaccine.

Because it was a phase 1 clinical trial, everyone in it received the vaccine. The treatment ingredients had been separately tested through phase 3 trials. Each time she got the vaccine “it made me feel like I had the flu for a day,” she says. The trial has not yet reported results.

The trial covered costs for the vaccine and related lab work. Her final visit was not covered, and was out-of-network for her insurance, so she paid about $1,000-$1,500 for that. She had help with hotel expenses from an American Cancer Society program.

She participated in other clinical trials as well. Earlier, while receiving trastuzumab, Sarah was in a study testing heart medicine in women taking trastuzumab, which may cause heart problems. Neither she nor the researchers know whether she received a medicine or placebo, an inactive substance. “I will never know until years from now what I got, but I didn’t have heart damage (from treatment),” Sarah says.

She and her family also participated in a study of genetic factors related to breast cancer in women younger than 40 when diagnosed. The study, which is still open, collects blood samples from young women living anywhere in the U.S., as well as from their siblings and parents.

Helping Other Georgia Women

image2Sarah has lymphedema from surgery, range-of-motion problems from radiation scarring and neuropathy from chemotherapy. Spurred by her squeaky-wheel nature and her own experiences, she became passionate about survivorship concerns.

She felt support was missing outside of hospital networks in Georgia and met other survivors who agreed with her. “We needed an outlet to not sit in a hospital and talk about being sick, but to have fun with women who understood what we were experiencing,” she says.

With a few other women, she co-founded Surviving Sisters, a nonprofit focused on nine underserved counties in coastal Georgia. The organization has peer navigators, a website with a directory of support resources and a private Facebook group. The group works with rural hospitals to connect survivors with services and holds social activities, such as picnics, beach days and retreats.

Because of her ongoing side effects and medical needs, Sarah could not return to her previous job and receives disability benefits. She became a certified patient navigator and volunteers helping others get through breast cancer treatment. She also serves as treasurer of Surviving Sisters.

“I loved my old job, but I look at it as breast cancer was for a reason. There has to be something I can do with it,” she says. “Survivorship is a big need.”


This 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.

Facing a Breast Cancer Few Know About: Patrice Starks

Written By Robin Warshaw, Contributing Writer
Reviewed By Minetta C. Liu, MD

On the day she was diagnosed with inflammatory breast cancer, also known as IBC, Patrice Starks, of Royal Palm Beach, Florida, had never heard of the disease.

Like many people, she thought all breast cancer formed as a lump that could be felt by touch or seen on a mammogram. Having just turned 41 years old, Patrice had her first mammogram a few months before and was told all was fine. When her left breast began to hurt and swell, she thought she had an infection, like the one she experienced when breastfeeding her daughter.

Finding out the real source of her breast discomfort “was completely shocking,” Patrice says – especially the aggressive nature of the type she had.

“One of the things that troubled me most was the lack of knowledge on my part – and in the world – about IBC. Even most of the doctors I see don’t know much about it,” she says.

Patrice Starks

Taking Action

IBC often makes no lump. The cancer cells block lymph vessels, which makes the breast swollen and red.  Affected breasts may feel warm or heavy, look bruised, or have skin ridges or pits, like an orange. Only 5 percent or fewer of all breast cancers in the U.S. are diagnosed as IBC. It is staged as stage III or more.

Because symptoms resemble other medical conditions, such as skin rashes or mastitis, a common breast infection, diagnosis may be delayed. A timely diagnosis of IBC is important because breast-related changes and discomfort may develop quickly.

Patrice was diagnosed with stage III, estrogen receptor-negative, progesterone receptor-negative, HER2-positive disease. She received her diagnosis on a Monday, saw an oncologist on Tuesday, then spent the rest of the week being readied for chemotherapy, which started the following week.

“You don’t have time to figure out your life,” she says.

She was working 50 hours or more per week, having just been promoted to a deputy supervisor job for Florida’s juvenile justice programs. Scheduled to go on a business trip that week, she called her boss and cancelled the trip right after getting her diagnosis.

“I had to work on making sure I became healthy enough to remain a wife, remain a mother, remain a co-worker,” she says. “My job description went from working for the state of Florida to working for Patrice.”

She was especially concerned about how her diagnosis would affect her young children: a 20-month-old daughter and 3-year-old son, who has autism and doesn’t speak.

“He’s very perceptive in understanding emotions, so I told the two of them that Mommy’s sick and she has a boo-boo.” Her son responded by putting his hand on her breast. “I said, ‘Yes, Mommy has a boo-boo.’”

When her hair began to fall out from chemotherapy, her husband shaved her head. Their daughter sat in Patrice’s lap, fascinated by the dropping hair, as their son ran around, laughing. “It was fine,” she says. “They don’t understand cancer, and I’m glad.”

Coping With Fatigue

Patrice had chemotherapy, trastuzumab (Herceptin) and then a mastectomy and radiation. She has experienced a lot of fatigue since treatment began. She can be having a conversation, then wake up three hours later, having fallen asleep without knowing it.

She gets up with the children and prepares them for day care. Her husband drives them while Patrice grabs a nap. Her mother, who is retired, helps with the laundry, drives Patrice to appointments and errands, and assists when the kids are home. Patrice bathes her daughter and son because “I didn’t want to change their routine. I wanted to still be their mother.”

She hopes the end of radiation treatment will lessen her tiredness. Her healthcare team advised her to walk. “They said any bit of exercise will give you more energy.”

Before breast cancer, she exercised twice a week and could walk a mile in 15 or 20 minutes. Recently, for a fundraising relay, she walked 2 miles in 2.5 hours. When she woke up the next day, she stayed awake for only a short time, and then slept another 6 to 8 hours more.

“You don’t even realize how tired you are until it hits you,” she says. When she has energy in the evenings, she puts the children in their stroller and walks about a mile in the family’s neighborhood.

Spreading the Word

Patrice has been on a personal campaign to tell more people about IBC. When her doctor’s office asked if she would talk with a woman who had just been diagnosed, she agreed immediately. “I want as many people to know as much about this as possible,” she says.

As an African-American, she is also concerned about the lack of awareness about IBC she sees among African-Americans, who are more likely to be diagnosed with the disease at a younger age than white women. All women should follow appropriate screening guidelines.

“I tell all of my friends, you have to do your monthly checks of your breast. I realized there were some changes in my breast as it was growing and growing, but I didn’t take the time from work and go to the doctor like I should have,” Patrice says.

Now she has a message for others: “Be sure you go to the doctor if there’s an issue.”

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.

Up in the Air Over Treatment: DeAnna Chenoweth

Written by Robin Warshaw, Contributing Writer

2015Chenoweth-DeAnna_mediumWhen you hear DeAnna Chenoweth lives in Miami, it’s reasonable to think she could find excellent cancer care at the large hospitals or centers near her home. That’s understandable to assume until you learn she lives in Miami, Oklahoma – not Miami, Florida. Living in a small town or rural area can make finding breast cancer care challenging.

There was a cancer center about 45 minutes away from DeAnna. “That was where most people went for treatment,” she says. At the time of her breast cancer diagnosis, however, the center and its hospital, in Joplin, Missouri, were shut down from severe tornado damage.

DeAnna, a sonographer at a small local hospital, was determined to locate breast cancer specialists – experts more often found in larger hospitals and cancer centers.

In her small town, DeAnna felt “everybody’s treated with the same recipe,” she says. She wanted to be sure her doctors would give a young woman the appropriate treatment, knew the latest research and would talk with her about it. It was important to her to find a team of providers she could trust and develop a relationship with throughout her experience. She also wanted access to all treatment options.

Long-distance treatment

DeAnna began searching for care. Diagnosed at age 41 with stage IIB hormone receptor-positive and HER2-positive disease, she first saw a breast surgeon 90 miles away, in Tulsa. She left that office feeling displeased with the uncaring attitude she encountered. “I didn’t like the way they treated me or the other patients being seen that day,” she says.

The other surgeon she could see was not in her health insurance network, so hercosts for care would be much higher. A Tulsa cancer center also was not covered, her insurance company told her, but a related location near Chicago, about 600 miles away, was in-network.

She decided to make the trips to Chicago for treatment because she couldn’t afford out-of-network costs at the closer facility. So, instead of driving 90 miles for care, DeAnna drove 90 miles, then got on an airplane and flew for every treatment or procedure. The center in Chicago covered her flights because she could not get in-network coverage at their Tulsa hospital.

Flying to another city for care saved her money over out-of-network costs. “It’s crazy, but it’s the game you have to play,” she says. “When you’re talking about these hospital bills, that difference of even 10 percent makes a huge difference.”

As a Native American of Cherokee descent, DeAnna also received help with co-pays from the Indian Health Service (IHS). She now picks up most of her ongoing medicines, with no co-pays, directly from a nearby IHS facility.

Traveling for treatment was rigorous. Since her 20-year marriage ended shortly before her diagnosis, DeAnna was a single parent, raising a 12-year-old and 16-year-old twins, plus had a full-time job. “I felt like the ringmaster,” she says. “I asked myself, how do I keep all these things going?”

Creating support

Some of DeAnna’s co-workers donated vacation or sick days to supplement hers. A large bake sale and Zumbathon event raised funds for her expenses.

Now 44, DeAnna thinks the number of affected young women living near her is unusual. She joined a breast cancer support group for young women when a friend of hers set it up. Her friend works in a Joplin mammography center. After 6 months, the group had about 40 members. They meet online and in person.

“I think I’m the oldest,” DeAnna says. One other woman is single. Most work, a few are at home with children.

Members have varying diagnoses and are at different points in their care. DeAnna recalls helping one 32-year-old woman who was about to have a mastectomy. “I showed her my drains and let her touch them. I said, “This is what you’re getting ready to do. Don’t be afraid.’”

When a member posted online about having her final chemotherapy session that day, another member dropped in and sat with her.

The group holds evening and daytime meet-ups, to let people attend when they can. They’re planning a weekend “slumber party” getaway to Branson,Missouri.

Having the group, says DeAnna, “is nice, because in my situation, I didn’t want to burden the kids.” She appreciates knowing other women affected by breast cancer who share her viewpoint and help each other.

“Some ladies will say, ‘My husband just doesn’t understand.’ And we say, ‘You don’t have to be all fuzzy and cupcakes here.’”

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.

I Know Who I am: Patricia Voelker

Written by Erin, Rowley, Writer and Content Coordinator

2015Voelker-Patricia_mediumAs a former pastor in a church whose members were largely gay and lesbian, Patricia Voelker has counseled couples who have faced discrimination in different areas of life, including health care.

Her advice to at least one couple: “Get a new doctor.”

In 2013, Patricia, a now 74-year-old Lexington, South Carolina resident, had to deal with two breast cancer diagnoses – hers, and her daughter’s, who was diagnosed a few months before Patricia. In the past, Patricia has encountered healthcare professionals who were insensitive to, or ill-informed about the gay community. But as a lesbian woman in treatment for breast cancer, she says she hasn’t experienced discrimination from her cancer care team. Any problems she’s had with them have been strictly medical.

Patricia only came out to herself as a lesbian at age 39. Though she is open about her sexuality, (“I know who I am and I’m fine with who I am,” she says), it’s not something she declares when meeting a new doctor. It didn’t really come up while talking with her cancer care team. This is due, in part, to her single relationship status: She didn’t have to explain a same-sex partner at appointments. Her therapist knows about her sexual orientation, as does her nurse practitioner, who Patricia has been going to for years.

Her advice for other LGBT people with breast cancer is the same advice she’d give to straight people with breast cancer: Make sure you have doctors you trust, because ultimately, you have to be your own best advocate.

“Make sure you’ve got a good relationship with [healthcare professionals],” she said. “If you don’t, don’t feel bad about asking for another opinion or for changing to somebody else.”

Patricia says that being open and willing to talk about her sexuality is what feels right to her, but she knows that can come with risks for some people.

“I can’t guarantee you that you won’t lose a job, or you won’t lose a friend, or you won’t lose a family member,” she said. “All I can say is I’m out and it works for me.”

Patricia doesn’t have any plans to start dating, but she says breast cancer shouldn’t stop others from doing so. Neither she nor her daughter, nor anybody else, Patricia says, did anything to bring the cancer on themselves, so there should be no sense of shame associated with the disease.

“[Cancer] might bother somebody else enough that they would not want to be involved with you, but that would be their problem,” she says.

Today, she and her daughter are both doing well. After having a lumpectomy followed by radiation, Patricia sees her nurse practitioner every 3 months and is on daily hormonal therapy to treat the hormone receptor-positive breast cancer.

She says she wanted to share her story to show what a wide spectrum of people there are in the breast cancer community – and even in the smaller, LGBT breast cancer community.

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.