People who have fought cancer and won may expect to go back to their ordinary lives. But life after cancer can be anything but ordinary.
By John Casey
Reviewed By Michael Smith
Although public health experts like to point out that overall rates of death from cancer have not budged, some cancers are a lot more survivable than others. More than ever, a diagnosis of cancer today isn't necessarily the death sentence it may have been a 20 years ago.
"For some adult cancers, the survival rate can be as high as 70%," says Lindsay Nohr, executive director of Fertile Hope, a nonprofit group that educates cancer patients about how treatment may affect their ability to have children. "For some pediatric cancers, the cure rate can be even higher."
The simple goal of survival for many cancer patients becomes so all-encompassing that many survivors are badly under prepared to a return to everyday life.
Life After Survival
"People should have information about the psychosocial issues that they're going to face when they walk out of the hospital door," says Susan Nessim, founder of Cancervive, a group that aims to assist people who have experienced cancer deal with return to normal life. She also is author of Can Survive: Reclaiming Your Life After Cancer.
"Your relationship to everyone around you is going to change," says Nessim, who is a survivor of rhabdomyosarcoma, a childhood cancer of the muscles, which she developed in 1975 at age 17. "You may find yourself cutting off relationships that aren't working. You may want to change jobs because you've had this meaningful, life-changing experience.
"Once you finish treatment, people start moving away from you because they assume you're fine now," she says. "I was often was told, 'You look great, you've got your hair back, so just get on with your life.' But it's not that easy. Many of us are not prepared for the fact that everything isn't going to be what is was."
Beyond the difficulties of cancer treatment lie the more mundane problems of life as a survivor. Many cancer survivors have trouble keeping health coverage.
"It's common for a cancer survivor's health insurance premium to go up so high they can't afford coverage," says Nessim. "Or certain scans or procedures won't be allowed under the plan, so in one way or another, they get cut out of coverage."
Survivors may have substantial medical bills to pay down, and some employers are reluctant to hire someone who has had cancer because of fears the person will not physically be able to handle work.
"All types of discrimination may be faced by survivors," Nessim says. "Sometimes people return to work to find that their job is gone or they've been shifted to a lower position. They may find themselves loaded down with travel assignments in an effort to get rid of them. Employers know the bounds of the Americans with Disabilities Act, and they can be very savvy about how to get around hiring people who have had cancer or other major health problems, such as AIDS."
The Fertility Issue
Of the problems faced by cancer survivors, damaged fertility is one of the least understood, says Fertile Hope's Nohr. The side effects of radiation, chemotherapy, or surgery can leave a person infertile.
"I would estimate that only 10% of oncologists even discuss the fertility issue with female patients who are under 45 before treatment," she says. "That is a big, big problem. Cancer patients are much more empowered now than they have been in the past, getting second opinions and researching their treatment options, but many patients don't understand that some cancer treatments many leave them unable to have children."
Cancer patients can take special fertility-saving measures before treatment. Adult and adolescent males can make deposits in a sperm bank for future use. Prepubescent boys can have testicular tissue frozen to preserve sperm.
For women the issues are more complex. A woman's fertility-saving measures depend entirely on her cancer treatment and her particular physiology. Eggs can be extracted and frozen, as can embryos. From there, the measures become increasingly tailored to an individual woman's needs.
"That's why all women cancer patients who have the potential to bear a child need to see a reproductive endocrinologist before cancer treatment begins," says Nohr. "Oncologists do not know enough about fertility. They tend to be not well educated about these issues, and that's why women need to be very proactive and think farther down the road to protect their fertility if possible."
That's also, says Nessim, why a survivor support group is so important.
"To have a group of survivors you can talk to is so vital," she says. "You learn from their experiences and mistakes. Once you finish treatment, your issues are dealing with everyday life. You may not be comfortable talking with cancer patients who are currently in treatment if you're worried about how you're going to keep your job or paying bills or feeling depressed."
Talking with other survivors about survivor issues is what makes all the difference, says Nessim.
John Casey is a freelance writer based in New York City.
Originally published Aug. 26, 2002.
Medically updated April 25, 2005.
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