Janet Wagner is busy. She used to work as a supervisor in a provider relations department for a health insurance company. She’s too busy for that now. She is a mother, a wife, and a professional advocate for the National Cervical Cancer Coalition. And—in her spare time—she’s undergoing her fifth regimen of chemotherapy for recurrent, metastatic cervical cancer.
Janet is one of an increasing number of women living with cancer long-term. Two and a half years ago, her doctors told her she had six to 12 months to live. “Someone has to live on the positive side of the statistics; it might as well be me,” she jokes.
Janet’s cancer is not curable—it’s chronic—but she doesn’t let that stop her. “I don’t dwell on it. I really don’t get up in the morning and think, Oh my gosh, I have cancer,” Janet explains. Instead she focuses on living well and pursuing her passions, which include working as an advocate for women with the disease. She is part of a growing group of women finding a way to live with cancer—or in spite of it.
Defining Chronic Cancer
Some cancers are curable: patients undergo treatment; they complete treatment; they move forward to survivorship. But there are other cancers that are considered incurable: there is treatment for these cancers, but there is no cure. Once upon a time, incurable cancers were referred to as terminal, but things are changing.
With new and innovative developments in cancer treatment, many incurable cancers are quite treatable, and patients can live a long time with cancer. These patients like to say they are living with cancer, not dying of it. In fact, this group of patients has adopted a new term for their cancer—chronic.
Lauren Groover, a professional advocate battling metastatic breast cancer, says, “Psychologically, the only way to deal with Stage IV cancer is to say it’s ‘chronic’ because when you say ‘terminal,’ it’s over—you find that dark tunnel, and there is no light at the end of it.”
By the time Lauren’s cancer was diagnosed in 2006, it had already reached Stage IV, and she was told that her life expectancy was between one and five years. Lauren is treating her cancer as a chronic disease, and she knows that she will never really be finished with treatment. “Once I wrapped my head around the idea that this is chronic, I wasn’t as let down anymore by my relapses.”
Mary Hughes, a clinical nurse specialist in the department of psychiatry at M. D. Anderson Cancer Center in Houston, works with patients who are living with chronic cancer. She says that it’s important to distinguish between chronic cancer that is in remission (such as leukemia or lymphoma) and metastatic cancer, which refers to active disease that has spread from the original site. Both conditions are chronic, but there is a distinction. “Living with metastatic disease is different from living with a cancer diagnosis with your disease in remission,” Hughes explains.
Patients with certain types of leukemia or lymphoma may experience long periods where their cancer is in remission, during which time they are not undergoing any type of treatment. With metastatic cancer, though, treatment is continual, as the focus is on controlling the disease. “Someone with metastatic disease will always have some type of cancer treatment as long as they’re alive because that’s how the disease remains controlled,” explains Hughes.
Chronic Means All the Time
“Chronic” may sound better than “terminal,” but it’s still an enduring challenge. Because chronic means all the time, you will live with this cancer always. Treatment becomes a constant part of life. “It’s nonstop,” Lauren says. “You’ve done chemo; now take this pill; now line up surgery. It’s just constantly something all the time.” And even when they’re not undergoing treatment, many patients living with chronic cancer experience long-term side effects.
Rising to the ongoing challenge of a chronic diagnosis is not easy, and the treatment cycle can be relentless. Janet started chemotherapy in December 2008 and has been on different regimens ever since. “We use one until it’s no longer working and I have progression of disease, and then we try something else,” she says. She endures, knowing that the treatment prolongs her life and determined to enjoy each moment, regardless of how many moments she has left.
Living with It
In some ways life with chronic cancer is no different from life without it: the laundry still piles up, children still need attention and care, and the car might still break down. But in so many other ways, life is forever changed, as patients with chronic cancer become acutely aware of how finite their time is.
In her work at M. D. Anderson, Hughes found that women in the support group for metastatic cancer patients that she conducted were concerned with the here and now. The women’s focus was on “living with cancer, living in between treatments—to try to live as well as they could, as long as they could,” Hughes says.
Lauren’s goals are similar: “I can’t live for six months down the road. I just have to live for today,” she says. She sees the chemotherapy as a way to buy herself precious time. “Time is my life, and chemotherapy gives me my time,” she says. So she doesn’t despair when it’s time for more chemotherapy, instead viewing it as an opportunity to gain six more months of freedom once the chemo is complete. “Those chemo breaks are really important to me,” Lauren says. “They allow me to spend those quality moments with my husband or my children.”
Janet also views her diagnosis, and the necessary treatments, as part of the bigger picture. Cancer is just one part of her life. “If you have a baby and the baby is colicky, you do what you have to do to get through that phase of the colic,” she says. “So, this is my colic phase. It’s not my life. I’m actually very healthy, except for a little bit of cancer.”
Chronic cancer presents a “new normal.” Life doesn’t stop; it changes. So, how do you cope with the reality that your cancer may never be cured and that your life might be cut shorter than you had hoped?
Hughes suggests that patients with chronic cancer stay focused on today and do their best not to worry—as difficult as that may be. “The main difficulty with worriers,” she says, “is that they don’t live in the present.” She insists that worrying only serves to rob people of precious time.
In addition, Hughes advises women to focus on relationships rather than tasks. “Save your energy for the really important things like reading to your grandchildren or talking to your children, not tasks like cleaning or going to the grocery store,” she insists. She says that sometimes women need to be given permission to let go of some of their normal responsibilities so that they can focus on what really matters.
For most people, Hughes says, relationships are what ultimately matter. “When people are well, they think that if they had only six months to live, they would travel around the world,” Hughes says. “But what they don’t realize is that you don’t have the energy to do that, and for most people they just want to be with family.”
It’s also important to set goals and make plans for the future. When Lauren was first diagnosed, her twin boys were freshmen in high school. She was determined to see them graduate, and she did. They’re now freshmen in college and, again, she is determined to see them graduate. “It’s baby steps for me,” she says. “When one goal is met, I immediately set another goal. I never think I’m done.”
Both Lauren and Janet insist that finding support and connection is critical. Lauren has used the Internet and social media to build community with other women coping with metastatic breast cancer. “In a small town, I’m pretty alone being so young with breast cancer. I haven’t found people locally to connect with, so online has been a huge blessing for me,” she says. “I just started making connections with other women, and I talk to them every day online. They live all over the world.”
Janet has found community through the National Cervical Cancer Coalition, where she works as an advocate. She is especially passionate about supporting women in the military because they are often away from their families and any form of support network.
Hughes says that these social connections are critical. Women need to be able to connect with other people who share their struggle and understand the challenges of living with chronic cancer. Some days you may find yourself lending support to other women who are struggling, and other days you may be on the receiving end of such support. Both components are important.
Never Give Up
Sometimes managing a chronic cancer diagnosis will take more of your energy than at other times. Finding a way to live well in the moment and to maintain a hopeful outlook may be the best way to navigate the disease. “I understand the statistics of my disease and the lifespan of my disease, but I don’t accept it,” Lauren insists. “I feel that when I accept that five years is my limit, then five years will be my limit. I want to survive 10 years.”
Mary Hughes offers these suggestions for friends and families supporting a loved one with chronic cancer:
- Avoid pity. “The worst thing anyone can do is pity the person,” says Hughes. She says that cancer patients despise getting what they refer to as “the look” from friends—the look that says, “Oh, pitiful you.”
- Keep it real. “They want to continue to have some kind of normalcy in their life and be part of decisions,” Hughes explains.
- Offer to help. Often the little things, like laundry and grocery shopping, require great effort by someone undergoing treatment. They might not ask for help, so offer.
- Ask about their wishes. It can be an uncomfortable topic, but it’s important to know what your loved one wants. Do they want to die at home? Do they want to be buried or cremated?
- Get support. Cancer affects the entire family. Many support groups or social workers offer services to help families cope.
- Let go of your agenda. Let your loved one set her own agenda. Her time is limited, and she should get to spend it the way she wants. You may think she should travel the world, but she may rather spend her time at home near loved ones.
- Be patient. The chronic pain and other issues that often accompany chronic cancer can be debilitating. Some days are harder than others. A little patience and compassion go a long way.
Coping with Chronic Cancer
- Avoid worrying. Worry is wasted energy.
- Stay focused on the present moment.
- Set goals for the future.
- Focus on relationships rather than tasks.
- Stay connected to some sort of social network.
- Find support.
“If you knew you had only six months to live, what would you do with your time? What would be important? Why aren’t you doing that if that’s important?”