Young breast cancer survivors in Sonoma County find support as 'Breasties'

A breast cancer diagnosis, at any age, extracts an emotional and physical toll that is impossible to label or quantify. But young women under 45 often face added challenges in coming to grips with the disease. Among the toughest are issues of future fertility, child rearing under duress, experiencing early menopause because of medications and suffering heightened concern about body image and intimacy during peak reproductive years.

Young breast cancer survivors also suffer from a higher prevalence of psychosocial issues, according to an article in the Journal of the National Cancer Institute.

“An important difference in how younger breast cancer impacts younger women is that younger women often have no peers who have had cancer, so they feel more isolated,” said Dr. Amy Shaw of St. Joseph Health's Cancer Survivorship Program in Santa Rosa. “I think it is safe to say that most women who are diagnosed after age 50 know at least one person who has had breast cancer.”

Breast cancer is still relatively rare among young women. According to American Cancer Society's Facts & Figures 2017-2018, fewer than 5% of all breast cancers diagnosed in the U.S. occur in women under 40. According to the Centers for Disease Control and Prevention, 11% of new breast cancer cases in the U.S. occur in women age 44 or younger.

In addition, breast cancers in younger women are more likely to be aggressive and require chemotherapy, which can damage the ovaries. Both chemotherapy and tamoxifen, a maintenance drug to prevent breast cancer coming back, can trigger menopause earlier than normal, which limits the window of time to have children.

Stacey Halvorsen of Petaluma, who was diagnosed in 2018 with breast cancer when she was 36 and had a 2-year-old son and 4-year-old daughter, was able to draw upon a strong, support system of family and friends during treatment. However, she needed to find someone to talk to who had walked in her shoes.

Good cry

Through a mutual friend, she was put in touch with Stephanie Frick of Santa Rosa, who was diagnosed in 2014 with breast cancer at age 29 when her son was 3 years old. The two strangers sat down on the couch together and had a good cry.

“She was so amazing to me in my journey and became such a good friend,” said Halvorsen, who went on to co-found the Northern Calfornia chapter of The Breasties, a national nonprofit dedicated to supporting young women affected by breast cancer through community and friendship.

“I want other people to have that … to talk about losing hair, eyebrows, fingernails, our boobs, and if we get to keep our nipples or not. How are my kids going to react, and what are they going to remember from this whole experience?”

As an ambassador for the NorCal Breasties, Halvorsen helps connect women through monthly meet-ups from San Francisco to Sacramento. Last weekend, seven women from the support group met at a Healdsburg winery, then attended an inspiring, one-woman show at the Raven, “Chemo Barbie: My Lady's Bits' Journey Through Breast Cancer,” starring and written by young breast cancer survivor Heather Keller of Los Angeles.

The actress crafted the heartbreaking and comedic story about her journey from healthy, vegan runner to cancer patient by drawing upon sources such as her YouTube journal, “Keep Abreast with Heather. ” The “Chemo Barbie” show debuted at the Hollywood Fringe Festival in 2017 and went on to tour internationally.

“It is my story, but it's not just about cancer,” Keller said. “It speaks to the general public to spread your wings … go out and live life, however you can .”

In the middle of chemotherapy, Halvorsen discovered The Breasties on Instagram and signed up to participate in one of their wellness retreats.

At the same time, Cassie Bush of Sacramento also signed up, and the pair now serve as ambassadors of the NorCal chapter.

“Everything that we do is positive and healing - it's not this big, depressing sob story,' Halvorsen said of the support group. “You have to maintain your sense of humor. If you can't enjoy your life today, and you're so bitter and upset about what happened, why did you fight so hard to live and survive?”

Frank vulnerability

For Keller and Halvorsen, sharing their personal stories with frank vulnerability and gritty humor allows them to feel good about helping others.

“If I can share this, maybe others will find some hope and strength,” Halvorsen said. “Maybe they'll find a way to push through … and be able to be a mom for their own journey.”

“Cancer is that big word that everyone is terrified of,” Keller said. “But I'm trying to dispel the terror that it gives you … with good science, we can treat it better and better.”

“Life can change in a split second”

When Keller was diagnosed with breast cancer - stage 1 triple positive invasive ductal carcinoma - it threw her life plans out the window.

“My husband and I put kids and traveling off to save money, and what for, if none of that matters?” she said. “It doesn't matter, because your life can change in a split second and a doctor's visit.”

After getting multiple biopsies and a lumpectomy, Keller was able to take hormones for fertility and had 12 eggs harvested. Out of the six eggs that survived fertilization, three were frozen. But the couple had to take out a $13,000 loan to cover the costs, which include a hefty yearly fee to keep the fertilized eggs in “frozen daycare.”

Then she started her chemotherapy, a cocktail of the immunotherapy drug, Herceptin, and Taxol, administered once a week for 12 weeks. In order to avoid losing her hair, she used an Arctic Cold Cap, which reduces blood flow to the hair follicles. The cap is worn before, during and after each infusion.

“It's six or seven hours of freezing it with dry ice,” she said of the cold cap, a high-maintenance process that doesn't work for all chemotherapy drugs. “I had to change it every 15 minutes.”

Next, she did radiation for five weeks. She still had her breasts and her hair, but the treatment threw her into “chemopause,” making her depressed and anxious.

“We all have this image of being bald and throwing up, but I didn't have that,” she said. “But I went into the tail end of menopause - my doctor calls it crash menopause - and I was crying all the time.”

Lost friends

Along the way, she also ended up losing a few friends who could not deal with her cancer. She talks about this phenomenon in her one-woman show, along with her new experience as a foster mom now in the process of adopting a 22-month-old girl she and her husband have parented for 18 months.

“People need to talk about the mental health aspect of it, and the relationships,” Keller said. “As a young person, it was very frustrating. Even now, I go to mom groups, and everyone is complaining, and I think, ‘I'm just happy to be alive and have a kid.'”

“The biggest goal ... was positivity”

For Halvorsen, the breast cancer diagnosis also came out of the blue, two weeks before her 36th birthday, in March 2018.

“I had a dream that my armpit hurt, and when I woke up, I felt it, and there was a lump there,” she said. “They found two more lumps in my breast.”

A few days after the biopsy, she found out she had invasive ductal carcinoma, the most common kind of breast cancer, which originates in the milk ducts. Her Stage 3 cancer was estrogen receptor positive and progesterone receptor positive, but HER2 negative.

“That means my specific type of cancer was fueled by the hormones in the body,” she said. “I was living my life, raising my babies and working full-time for my dad (owner of Lombardi's Gourmet Deli) … I had no idea I had cancer. Everything was normal.”

After consulting with a team of doctors in Santa Rosa, she decided to get a second opinion from UCSF Medical Center, where she was accepted into a clinical trial for her chemotherapy treatment.

She did the cold caps all the way through her first 12 rounds of Taxol, which prevented her from losing her hair. However, the cold caps did not work during the next round of Adriamycin cytoxan, also known as “the red devil.”

“I finally shaved my head after two months, and I wore a wig a lot,” she said. “I wore it so my kids could see me as me … the biggest goal through this was positivity. I had to get up every morning and pretend like nothing was wrong.”

Double mastectomy

Since she already had two children - daughter Shaye, now 6, and son Jace, now 3 - she went ahead and had a double mastectomy and double reconstruction last fall. The surgical team inserted tissue expanders, then she went through 25 rounds of radiation.

“I wanted them to throw the kitchen sink at me,” she said. “My hope was that I wasn't going to have to do this again.”

After a problem with one of her expanders, which had to be taken out and later replaced, Halvorsen has two more hurdles to go through: exchange surgery in November, where the silicone implants are put in; and a hysterectomy in January, to keep her hormones in check.

Now she eats a mostly plant-based diet and has reclaimed her outdoors lifestyle, riding horses with her daughter a couple of times a week.

Although now in the survivorship phase, she still finds it difficult to deal with the nagging fears and worries.

“You just get mad at cancer,” she explained. “My anger and frustration is, ‘You took away my bliss of feeling assured that I was going to be here to watch my kids graduate high school and get married and have babies.”

Although her body has bounced back well, she found a good a good therapist to help her control her anxiety.

“I can see the light some days, and some days it's a little hard,” she said. “They don't prepare you for being a survivor.”

"You have to laugh"

Stephanie Frick was a perfect mentor for Halvorsen. At age 29 with one, 3-year-old son, she also found an armpit lump. It turned out she also had invasive ductal carcinoma - stage 2 or 3 - and had another lump in her right breast.

Her doctors hit the cancer hard, starting with chemotherapy the week she was diagnosed, followed by a double mastectomy, another round of chemotherapy and 25 rounds of radiation. And, because they found she had one of the BRCA genetic mutations, she opted to have a hysterectomy.

“That meant I had a 40% chance of getting ovarian cancer,” she said. “Having this genetic mutation, I think about my son. He has a 50% chance of having it. It's less common for males, but it happens.”

Her weight plunged from 115 to 98 pounds, and her hair fell out after chemotherapy. She asked her husband, a Petaluma policeman, to shave her head while her son was watching.

“My son said, ‘You look awkward,'” she recalled. “That made me laugh. You have to laugh. It's all so sad.”

The year she was diagnosed, Frick was asked to be the speaker for Catwalk for a Cure by a friend who organizes the benefit event.

“I don't talk in front of people, but I got up there in front of 600 people, bald and flat-chested,” she said. I realized it was important to tell my story.”

Reached out on Facebook

Although her husband and family provided tremendous support during her treatment, she didn't know anyone her age who had been through breast cancer. So she reached out to a woman on Facebook, who also had a son and was about six months ahead of her in treatment.

“I ended up talking to her, and it was so helpful,” she said. “Now, I love being that person that someone can go to and ask any question.”

Like Halvorsen, Frick finds that the survivorship phase carries its own set of challenges, including “the fight after the fight.”

“You have your treatment, and you have all these people around you, asking you if you're OK,” she said. “And then treatment stops, and everyone's gone.”

Then there's the challenge of going through menopause at the age of 35 and dealing with hot flashes. Fortunately, she works part-time at a wholesale flower market in Rohnert Park.

“It smells good, and it's pretty,” she said. “We have a giant cooler, so when I have a hot flash, I go in there for a minute.”

Laughter kept her going

Ingrid Bromham of Santa Rosa was diagnosed with a rare form of breast cancer - invasive lobular carcinoma, Stage 2b - in June 2018. She was 44 years old and her daughter, Maggie, was 12.

She thought she felt something in her breast, went into the doctor, and then the doctor found something suspicious on the other side of her breast.

“The surgeon and oncologist both said, ‘We can't believe that you found this,'” she said. “It's harder to detect, because it's shaped like tree branches. It's not a big, lumpy mass.”

Mom duties

That first day, she burst into tears and didn't stop crying until she got home. The hardest thing for her was thinking about how to keep up her mom duties while going through treatment.

“I was completely shocked,” she said. “And then I was like, all right. ‘How do we do this? What's the next step?'”

A police dispatcher in Petaluma, Bromham went quickly into crisis control mode, facing each hurdle - lumpectomy, chemotherapy, hair loss, double mastectomy, reconstruction, radiation and a relapse of a prior vertigo condition - with equanimity and a sense of humor. Her laughter was contagious, spreading outward her boyfriend and daughter to her co-workers.

“We laughed all the time about everything,” she said. “That's really the only thing that kept us going … we all just laugh about it, because what else could go wrong? When one of the expanders ruptured? ‘Oh please.' Then they put in a new one, and I get an infection. ‘Oh my god. ‘I was telling a guy at work, and he said, ‘How are you still alive? You are a medical marvel.'”

Even when she would go to chemotherapy, she refused to give into feelings of gloom and doom.

“We'd walk in and laugh and have a great time,” she said. “I didn't want to sit there and feel sorry for myself. No. I'm going to keep going.”

Bromham is done with treatment, but she still needs a replacement expander before the final reconstruction surgery can take place.

Although humor has worked for her, she advises other breast cancer survivors to find what works for them and hold onto it. And don't give into self-pity.

“Don't give yourself that choice to be ‘Woe is me,'” she said. “A day or two is fine. You can't just wallow in it … you just gotta take the bull by the horns.”

You can reach Staff Writer Diane Peterson at 707-521-5287 or diane.peterson@pressdemocrat.com. On Twitter @dianepete56.