Young breast cancer patients turn to each other for support
March 31, 2011
Suzanne Wintrob
SPECIAL TO THE STAR
At 28, Kristal Wei was living the good life. The Toronto resident had a secure job as an auditor at a major consulting firm, performed with a salsa dance troupe, and had just started dating a fellow dancer. The day she returned from a European vacation, Wei received dreaded news: the lump she discovered on her breast was cancerous.
“I don’t think I fully understood what was going to happen,” says Wei, who moved to Toronto from Trinidad in 2001. “I didn’t know anybody personally or close to me [who had breast cancer], and people don’t really talk about it that much . . . . It was rough news to take.”
After the initial blow, isolation set in. Her mother was far away in Trinidad. Wei, herself, was young and facing an uncertain future.
While her friends were moving up the corporate ladder, getting married and planning children, Wei was enduring menopausal symptoms and learning about mastectomies, chemotherapy and fertility options.
Though her boyfriend was extremely supportive and understanding, she worried how they would cope when she had her breast removed and lost her hair.
It wasn’t until Wei met other young women with breast cancer that she found comfort.
As she blogged about her journey, at www.kristalbreastcancer.blogspot.com, she gained strength from the positive comments she received from other young survivors.
Wei’s story is all too common.
According to the Canadian Cancer Society, breast cancer is the most common cancer in women over the age of 20. Deaths from breast cancer are more frequent for women 30 to 39 years old than they are from other common cancers.
Dr. Ellen Warner, an oncologist at Sunnybrook’s Odette Cancer Centre, launched a program, dubbed PYNK, to help women under 40 facing breast cancer navigate the medical and psychological process. PYNK hosts educational activities for younger patients and for healthcare providers who deal with them, and conducts research geared at this age group.
“They’re the ones who are more likely to be single or dating or just into relationships or marriages,” says Warner. “Everybody else has got these incredibly healthy friends, and they’re sick or facing death.
“Some have little kids and there’s nobody to help out. They’re worried about finances. Suddenly, the woman can’t work. The husband has to take time off to help out with the kids. He’s threatening to lose his job. Financial pressure is massive.”
Young women face fertility problems because chemotherapy drugs put them into permanent or artificial menopause. “Some poor 30-year-old woman has hot flashes, mood swings, dry vagina, no sex drive, weight gain, and so on. She feels like her 60-year-old mother,” says Warner.
Because mammograms are not routinely given to women of less than 50, the lumps of younger women tend to be large when discovered and the tumors are more aggressive.
Warner believes lifestyle is setting up young women for a much higher risk of breast cancer in the future. This can take the form of habits the impose a strain on the DNA or prolonged exposure to hormones. She cites teen smoking, alcohol, earlier use of the birth control pill, less exercise, the delay of childbirth until after age 30, and having fewer children or none at all.
Whatever the reasons, it’s still a difficult place for young women to be and that’s why support is so vital.
“[Women] do feel so strange and unusual at the hospital, and even sometimes doctors and nurses will react with shock and say, ‘Oh, you’re so young,’ ” says M.J. DeCoteau, founder and executive director of Rethink Breast Cancer. “They want to meet other young women they can relate to.”
Rethink hosts monthly gatherings at Lululemon stores in Toronto, Calgary and Montreal featuring speakers or fun activities and giving young women a chance to meet others like them.
Rethink also runs a peer support group pairing newly diagnosed women with survivors, as well as a Saturday family group where fathers and kids can find support, too.
Carolyn Schreuer of Ancaster, Ont., a married mom of two teenagers, was 45 when she was diagnosed and had a mastectomy followed by chemo and radiation.
Support, she says, was her salvation.
“There was a feeling like I belong,” says Schreuer. “It’s like you’ve already met someone and already talked, even though you haven’t. You have this big ordeal in common. There’s that feeling of acceptance immediately, that feeling of, ‘We get it, we’ve been there.’ ”
Schreuer urges women to follow their instincts if they sense a lump.
“If I waited until I was 50 [to have a mammogram], I'd be dead now.
“Be persistent! Get the care you need! Trust your gut and your feminine intuition! If you find a lump or anything unusual, don't wait for it to go away on its own! Get it checked out, and the sooner the better! And if you are not satisfied with the answer or opinion, keep asking! Go for a second or third opinion!
“Sadly, the reality is you’re never too young for breast cancer.”
Wei’s now recovering from her last chemo session and is about to start on a five-year hormone drug routine. She’s looking forward to her appointment with a surgeon to find out about reconstructive surgery. She has decided against freezing her eggs in anticipation of wanting to have children, and wouldn’t dare ask her boyfriend for sperm because the relationship is new.
“I felt bad, I didn’t want to put this burden on him,” says Wei of the early days after her diagnosis. “It was like, ‘This isn’t what you signed up for.’ But it has actually made us stronger. He’s been there every step of the way. He’s been very understanding and is always giving me positive comments to keep up my spirits and feel good about myself.
“That has really helped.”
Breast cancer
Incidence 23,380 a year
Deaths: 5,350
Symptoms: Most often breast cancer is first noticed as a painless lump in the breast or armpit. You or your partner may discover the lump, or your doctor may find it during a routine physical exam or screening mammogram. Other signs might include:
• A lump or swelling in the armpit
• Changes in breast size or shape
• Dimpling or puckering of the skin – thickening and dimpling skin is sometimes called orange peel
• Redness, swelling and increased warmth in the affected breast
• Inverted nipple – nipple turns inwards
• Crusting or scaling on the nipple
Often, these symptoms are not caused by cancer. Other health problems can cause them. Testing is necessary to make a diagnosis.