“The hardest part” of breast cancer under 40

The other day, as Beth Caldwell was making coffee with her daughter, the 5-year-old asked, “Are you going to live as long as my grandparents? Because I want to visit your house when I’m a grown-up like we visit Nana and Papa.”

Beth told Maggie she hopes so, but she didn’t know the answer.

If not, the little girl continued, “We can visit dad’s house and I can visit your grave.”

Caldwell, a mom, wife and a former civil rights lawyer from Seattle, just turned 40. Diagnosed with stage 4 metastatic breast cancer at 37, she told CBS News that two-and-a-half years in, there have been so many changes in her life – from navigating conversations about cancer with her two young children to managing work and treatments and keeping family life on track.

Women diagnosed with breast cancer under the age of 40, like Caldwell, can face uniquely difficult challenges compared to older women with the disease, said Dr. Julie Gralow, a member of the clinical research division at Fred Hutchinson Cancer Research Center, and director of breast medical oncology at Seattle Cancer Care Alliance. 

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Beth Caldwell, who is being treated for stage 4 metastatic breast cancer, snuggles with her family, including her husband J, and her children, Maggie and Jim. The photo was taken in the spring of 2015 in Bitter Lake Park, Seattle.

Courtesy of Beth Caldwell

Their cancers tend to be more aggressive, like Caldwell’s. There are fertility concerns that older women don’t have to worry about. And their careers are often interrupted right in the middle of their professional prime due to treatments and side effects, said Gralow, who is also a professor of medical oncology at the University of Washington School of Medicine. 

“A lot of women didn’t think they were done with childbearing or they may have very young kids and are now panicked about being there to raise them,” Gralow told CBS News.

It can be a lonely journey, too, she said, because fewer women under 40 get breast cancer. The average age for diagnosis of breast cancer is 62 in the U.S.

“Younger women often feel isolated because they don’t know other women their age who have had breast cancer. They may have family, friends or neighbors who have it, but they tend to be older,” Gralow said.

They are not alone, however. It’s estimated that more than 250,000 women diagnosed with breast cancer at age 40 or younger are living in the U.S. today, according to the Young Survival Coalition. More than 13,000 young women will be diagnosed this year.

It’s just so unexpected, said Dr. Stephanie Bernick, chief of surgical oncology at Lenox Hill Hospital in New York City.

“They are working and raising young children. They’re just getting their lives going and it’s not anything they thought they’d have to think about. Women are faced with this mortality when they’re usually in the prime of their lives,” Bernick said.

Just like Caldwell.

She has a form of breast cancer for which there is currently no cure, but treatments are helping to keep it at bay for now.

“I am often the youngest patient in my oncology clinic. Once in a while I’ll see someone in my age range and be like, let’s make friends,” Caldwell joked as she sat in the hospital and talked by phone with CBS News. She’s receiving hydration therapy before another round of chemotherapy begins. The extra fluids will help wash potentially damaging chemotherapy chemicals out of her kidneys, she explained.

She first discovered a lump while doing a self-exam. At the time, she was too young to have gotten her first mammogram, which isn’t recommended until age 40 or later.

“I was in the shower and I thought, that can’t be. My grandma had breast cancer, but in her seventies. She had a double mastectomy and lived 10 more years. I thought it was an old people’s disease,” she said.

She said that since the diagnosis she’s had to give up her job as a lawyer.

“I was a civil rights attorney for the federal government. I had a busy life. I did volunteer work with the Girl Scouts and the March of Dimes. I worked through my first round of chemo and through my mastectomy and then went on disability and retirement because my cancer is not curable,” she said.

She wasn’t feeling productive at work, so that also fed into her decision. 

“At work, I would be out sick from chemo and when I’d recover I’d come back to the office and would do... I call it ‘the hug and chat.’ Everybody would come by and ask how I was feeling, and about the kids, and I wasn’t getting any work done. And I wasn’t contributing the way I used to. My coworkers needed to step in for me, I started to realize. When I was first diagnosed, I knew I was stage 4 and I thought I’d go through heavy-duty treatment for a bit and it’d go back to normal, but that was sort of a pipe dream. It’s not the way stage 4 works,” she said.

“I realize now I have this other job. I am a cancer patient. I couldn’t give up being a parent. The only job I could give up was lawyer,” she said.

Giving up work was hard, though. “Being a lawyer was so much a part of my identity and I was proud to have worked 13 years as a civil servant.”

Caldwell’s husband has a full-time job in IT which provides financial security and they get health insurance through her disability retirement benefits, she added.

“The hardest part...”

“For me, the hardest part of cancer is how it’s going to affect my children,” said Caldwell, who also has a son, Jim, who is 9.

“We’re a family that’s always been open and we are straightforward to them about cancer. The best advice I got about talking with kids about cancer is you need to tell them the truth and nothing but the truth, but you don’t have to tell them the whole truth,” she said.

About a year after her diagnosis, she started discussing her prognosis with her son.

“He knew I’d always had cancer but the idea of cancer isn’t something we’d talked about. When he asked, are you going to die of a cancer, I said yes. My husband and I said we don’t know when but that I can do medicines to help, and he was like, OK. And we promised him that when the time came we’d let him know,” said Caldwell.

Some younger breast cancer patients haven’t had children yet, and Gralow said fertility is one of the first things they address after a diagnosis if a woman has questions. They can meet with a doctor who specializes in fertility in cancer patients to discuss fertility preservation options. They also talk about adoption as a possible choice.

“We individualize this to the patient and to her priorities,” said Gralow. “We don’t have big, long windows, but if they say this is super-important to me then we will get them in to see a specialist and try to help them.”

The lonely part of the disease comes and goes, Caldwell said. She’s in a local support group for women with advanced cancer and two members died in recent months, which was hard.

“They were people who came out and hung out on my deck and we drank lemonade together,” said Caldwell.

Her kids see her grieving the loss of those friends, and that’s not necessarily a bad thing, she explained.

“They see what grieving looks like and they know it’s OK to feel sad and cry, and it’s OK to get angry and have all the feelings.”

Connecting with women who don’t have cancer can be harder sometimes. 

“The women at school, the ones you only know through your children, those conversations often remain very awkward. A few I’ve remained friends with. But it’s the ‘broken neck sad face’ – they tilt their head sideways and make that sad, pitying face. I often avoid that. Pity – I’m not up for it,” she said.

Cancer has helped her learn “who rises and who doesn’t. Who you can count on and who you can’t,” she added.

“In our lives a lot of people have risen to the occasion. Both of my best friends. And my husband was in the marching band at the University of Washington and many of them have jumped right in to help out, creating a meal train when I am in chemo and helping out with kids when we need to go to a doctor’s appointment,” she said.

Caldwell’s older sister comes on weekends to help out and her parents live about 20 minutes across town and they visit often. But about a year after she was diagnosed, her mom was diagnosed with breast cancer, too. However, it was a less aggressive form.

“Hers, luckily, was stage 2 and she didn’t have any lymph node involvement,” said Caldwell, noting that her mom is doing well now a year out from her diagnosis.

She doesn’t feel sad or resentful that her mom is doing better than she is. “I was just relieved she was OK. I didn’t want her going through what I’m going through. I didn’t want anyone going through what I go through. But having gone through chemo and radiation, she has a deeper understanding of what chemo is like for me,” she said.

The toughest time was at the beginning of breast cancer, said Caldwell. “I think the time I felt most alone was probably in that first year after diagnosis. I mostly just hadn’t met other patients with metastatic breast cancer. For many, in the early stage, it’s like, ‘You’re in the sorority now,’ but that really didn’t fit with the life I was living and the fears I have to live with and that the median survival for it is still pretty short. I think I felt most alone at that point,” she said.

Attending a Living Beyond Breast Cancer conference in 2015 was the turning point, she said.

“Just being in a room with hundreds of other people – women and men – experiencing what I was experiencing. I knew it was wrong that more research dollars didn’t go to metastatic breast cancer – only 7 percent do – and I felt angry about it,” she said.

She also realized she could do something about it and has parlayed some of her legal skills into breast cancer activism.

“Doing advocacy work isn’t just about me. It’s about all these women, and that’s when I got involved in activism and cofounded a grass roots organization that tries to change the landscape,” she said.

The group, METUP, helps connect patients and organizes events such as “die-ins” on Capitol Hill to encourage the channeling of more research money toward metastatic disease, which gets short-shrift when it comes to funding, she said.

How couples cope

Bernick, of Lenox Hill Hospital, said she’s seen the way breast cancer can take a toll on couples’ relationships.

“Many women connect their sexuality with their breasts, even if they don’t have to remove their breasts. There can be scars, even a change in shape. A mastectomy results in even greater changes,” she said, noting that treatment puts many women at risk for premature menopause.

Women who are dating grapple with whether to bring it up or not, and how early to say something.

“If they’re dating, do they have to explain it right away? They don’t want to surprise yet they don’t want to make assumptions about it. It puts pressure on the whole dating relationship,” Bernick said.

Some married couples or those who’ve been together longer go into therapy to help work through the stresses it puts on a relationship, she said.

“I have seen it break up couples. Sometimes if they don’t have a very caring partner, it can bring problems that were already there to a head, or it can cause problems. Sometimes men have difficulty dealing with it, facing the fact that their partner can die. Some people just can’t deal with it and certainly some men can’t deal with physical changes for people who have mastectomies,” Bernick said.

But she’s also seen many men cope well when their partners get breast cancer.

Caldwell’s husband J is there for her.

“Marriage – I am lucky. I have friends whose cancer has ruined their marriage. They’re getting divorced because of cancer. Their spouse wasn’t in it for good times and bad. My husband has completely stepped up. When I’m sick and can’t do anything, he picks up the family and carries on. He’s emotionally struggling as much as I am because he’s going to have to carry on when I’m gone,” she said.

But to fight that, Caldwell said, “We spend a lot of life being in the moment and not being focused on the worries of the future. To be in this moment.”

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    Mary Brophy Marcus covers health and wellness for CBSNews.com