Returning to Real Life After Cancer
“You have cancer.”
Three words that roughly 1.67 million Americans will hear this year. Half of U.S. men and one-third of U.S. women will be diagnosed with cancer in their lifetimes.
“Those numbers do sound scary,” says oncology surgeon Peter Edelstein, MD, author of “Own Your Cancer.” He says, there is plenty of good news, too. “Survival rates have spiked drastically.” As recent as the 1970s, only half of cancer victims survived five years.
Consider this: 68 percent of all those who are diagnosed with cancer in the U.S. are still alive five years later, and survival is even higher in some groups. With those inspiring cancer odds, doctors emphasize that what a cancer patient does after diagnosis really matters.
“Some cancers we believe we will cure soon and others will be put into remission for a long time,” says Edelstein. “So it may be that someone will have cancer, but they will live with it. Cancer won’t be what kills them decades later.”
Getting a Cancer Diagnosis
That sounds fine to Josie Rubio, a writer and cancer survivor in Brooklyn, NY. At age 35, last year Rubio was diagnosed with Hodgkin’s lymphoma after having discomfort, a neck lump and a rash that several doctors dismissed as minor ailments (one doc actually told her the rash was a nickel allergy). She’s undergone chemotherapy, radiation, considerable drug therapies and, most recently, an autologous stem cell transplant.
“Cancer has forced me to go through things I never thought I could handle,” says Rubio, who blogs about her experiences on her health blog, “A Pain in the Neck.” (http://apainintheneck.com/).
The fact that Rubio actively pursued a correct diagnosis and treatment options, even at one point participating in a clinical trial, and uses her blog to talk about her myriad experiences is exactly the type of behavior that Edelstein says bodes well for quality of life and perhaps even outcomes.
Becoming a Cancer Survivor
According to Edelstein, a diagnosis of cancer has to be a sort of rallying call. Someone who has cancer — as well as family and friends — must believe that you can understand the basics and be active in treatment decisions. When it comes to a serious disease, it never pays to bury your head in the sand, he says.
“People take ownership of so many things — homes, cars, businesses, you name it. But when some of these same people [who get cancer], give up ownership and hand decisions over to doctors and a health care system that doesn’t even know them, that’s a huge mistake. It limits your potential for medical success and your quality of life will plummet,” warns Edelstein.
The first step to becoming a survivor is to understand what type of cancer you have and your stage of illness. Staging indicates the severity or extent of the cancer.
“That makes a difference because it influences the treatments you might pursue,” says Edelstein. It isn’t that you have to become an oncologist or scientist and understand every nuance of the disease, but you have to get the basics and feel as if you’re making informed treatment decisions.
Cancer treatments are typically grueling, but Edelstein says your medical team is a big key to living as well as possible under the circumstances. “You have to feel as if you can work with your doctor — that he or she is someone who explains things to you in a way you can understand, a way that empowers you.”
Some cancer survivors get moral support and valuable information from support groups, either online or in person. Many people prefer to keep their illness a private affair, but in Rubio’s case “going public” had benefits: The blog gave her a place to parse out and share details of the disease, treatments and side effects, and how cancer has influenced her life.
“What it really did, even from the beginning, is keep me hopeful that recovery and remission would be in sight,” says Rubio.
Life After Cancer Treatment
While Edelstein promotes “owning your cancer,” he doesn’t advise letting it own you. It’s a subtle difference. It means you must reclaim your life beyond disease, which is what Rubio has been trying to do to varying degrees for the past year and a half.
For example, Rubio started slowly getting back to work not long after she got out of the hospital. “I’m lucky that I work at home. I know this is something people who don't work at home often aren't able to do,” she says.
While she’s hoping to someday very soon be back to the old Josie who used to love Bikram yoga and boot camp-style workouts, she’s trying to exercise as much as possible. “I’ve been doing a walking DVD, simple strength training with light weights and gentle yoga to slowly regain my strength and flexibility after a month in a hospital bed.”
Once her immune system is strong enough, she’ll get back to gardening, too. For now, though, she’s taken up old pursuits she can do while her energy level is low, like embroidery and crocheting.
“My friends now have a bunch of ugly scarves,” she says with a laugh.
For Patients and Family Caregivers
If you have cancer or you tend to someone with cancer, keep these points in mind:
- Open communication is essential, but it will be incumbent on the cancer patient to make this happen. “Caregivers are not going to want to burden the patient or bring up any fears or concerns about work, money or any variety of touchy issues. It’s essential that the patient starts talking with loved ones openly about all of this,” says Edelstein. Meet with counselors, financial advisors or pastors/priests if you need help facilitating difficult conversations.
- Many cancer survivors say that it’s helpful to consider even small silver linings in illness. For example, Rubio says cancer brought her closer to her boyfriend, reminded her that she has a network of good friends and made her realize she is much, much tougher than she thought. “I also learned that I don't need to have long hair. I'm okay with being a bald lady for now, and I think I'm going to stick with short hair!” she says.
- If you’re a friend or colleague of a cancer survivor, you may not know what to do to help. Cancer survivors say that statements such as “think positive” tend to irk them. Opt for something concrete: “Do you need a ride to chemo?”
- Rubio says also consider the primary family caregiver of this cancer patient. She may be under enormous stress and there is probably something you can do to help. For example, Rubio’s friends chipped in and hired a cleaning person so her boyfriend could be relieved of these chores every week.
- Support groups offer much more than just commiseration. Support, in all of its forms, should be encouraged. Groups are available to both patients and caregivers in person or online.