Bunmi Ishola

Some level of sadness is normal after receiving a cancer diagnosis. The fear of dying, negative changes in self-esteem and body image, interruption of life plans, and other physical and emotional issues can easily cause a cancer patient to feel downcast—and downright fearful.

Jimmie Holland, MD, attending psychiatrist at Memorial Sloan-Kettering Cancer Center, says that feeling sad is a part of dealing with a chronic illness such as cancer. Prolonged sadness, however, may be due to depression.

Research has shown that about 20 to 40 percent of cancer patients experience depression. Most of these, Holland says, are minor to moderate cases. About 10 percent suffer from severe depression. These patients are less likely to take their medication, maintain their health, and are more likely to withdraw from support, she says.  

Emotional symptoms include a continuously dejected mood, loss of pleasure or interest in activities, increased feelings of guilt or worthlessness, and thoughts of death or suicide. Physical symptoms include weight loss or gain, fatigue, difficulty concentrating, and sleep disorders. 

Doctors diagnose depression when five or more of the physical and emotional symptoms are present daily for two weeks or more or when they begin interfering with normal life activities.

Dealing with major lifestyle changes and financial issues, such as those that accompany a cancer diagnosis, can cause emotional distress that can turn into depression. 

Depression also can be a side effect of chemotherapy, hormonal therapy, and drugs that manage symptoms such as nausea and pain. Holland says the two biggest culprits in this category are interferon, used to slow growth in certain tumors, and steroids, given to reduce potential allergic reactions to different cancer treatments. 

Cancer-related risk factors for developing depression include poorly controlled or increased pain, increased physical impairment, and an advanced stage of cancer. Other risk factors include a history of depression, lack of family support, history of alcoholism or drug abuse, and having other medical issues besides cancer.

The Institute of Medicine recommended in 2007 that all new and recurring cancer patients should be evaluated during their appointments for their level of distress.

The screening process lets patients rate their level of stress on a scale from one to 10. If the patient‘s level is four or higher, a discussion about potential causes should take place. The nurse or oncologist should then refer the patient to the proper psychosocial resource. 

“Quality care today can’t be done without this dimension being included,” Holland says.  

Patients with mild to moderate depression are largely treated with counseling, she says. This is done through cognitive-behavioral therapy, support groups, and religious and spiritual resources.

Research studies have shown complementary therapies, such as yoga and regular exercise, also benefit patients with mild to moderate depression. 

Most patients do not require antidepressant medication unless they suffer from major symptoms or have difficulty sleeping or eating, Holland says.  

If your doctor prescribes an antidepressant, he or she needs to know all medications and supplements you are taking to avoid possible drug interactions. For example, St. John’s wort can cause pronounced side effects or diminished activity of other drugs by interfering with their metabolism or activity. 

The American Psychosocial Oncology Society provides a helpline at 1-866-APOS-4-HELP (1-866-276-7443) that can help patients find a counselor in their local communities who is familiar with cancer issues.

Articles

Not Just the Blues

Even with 50 sites and 100 satellite  locations, one of the largest providers of psychosocial support for cancer  patients and their loved ones couldn’t meet the needs of everybody seeking support and solace from the struggles of cancer. The demand was too grand, the need too deep to bring help that would make a difference. 

“There are so many patients and families who need support who either live too far or are too ill to get support services,” says Mitch Golant, PhD, senior vice-president of research and training at the Cancer Support Community (CSC), a union of The Wellness Community and Gilda’s Club.

In 1998, The Wellness Community began running online cancer support groups. In the 12 years since, the CSC has seen a surge in the number of people who use its online groups, and other organizations have started similar online support groups. 

Surveys by The Pew Research Center suggest that the number of people served by online groups is high. Last year, more than 60 percent of Americans used the Internet to find health and medical information, and 6 percent of this group said they participated in some form of online discussion group or mailing list. 

Participants in online support groups don’t have to worry about inconvenient meeting locations or times; childcare or caregiver concerns; or small patient population numbers because of the rural setting or rare cancer type. Some researchers have also described these groups as an “equalizer” because of the anonymity online support groups provide—there’s no age, gender, or social status visibly apparent to other members.

People can choose from a variety of options—message boards, e-mail lists, chat rooms, live chats. Some online groups are professionally managed. Some are peer-mediated. Most groups are accessible around the clock, but some occur in real time. 

“There are different choices and formats for online support, and each has a niche,” says Paula Klemm, PhD, RN, assistant director of the School of Nursing at University of Delaware. “It’s helpful that there are so many choices to fit people’s different needs and preferences.”

Klemm conducted a review of research literature on online cancer support groups in 2003. She found that information seeking and sharing, social support, and personal empowerment were three major dimensions of online support groups, making up almost 80 percent of the types of messages posted in online cancer support groups. The research showed a difference between what men wanted and what women wanted. Seeking and giving information were priorities for male participants, while giving and receiving support and encouragement were priorities for women.

Both were a priority for Lois Dickerman. Her husband, Dick, was diagnosed with stage 4B esophageal cancer in 2004. 

“I’d never heard of esophageal cancer,” she says. “So, I just basically went online, and there was something called the Esophageal Cancer Group.” 

This Esophageal Cancer Group was managed by the Association of Cancer Online Resources (ACOR), which began in 1995. Today, ACOR has almost 160 mailing groups available and hosts a real-time support community on 

You get a lot more contact and kind of a satisfaction or comfort level of knowing your family is not alone in all this.

In 2003, Golant and others from what was then The Wellness Community published a study looking at the effectiveness of electronic support groups for breast cancer patients. Almost half of the 67 women involved with the study were from a rural or small town. That holds true for the individuals the CSC serves online now, Golant said. 

In his research study, Golant found that 67 percent of patients found the online group to be beneficial. The women in the study said they benefitted from communicating with others dealing with similar issues and changing their focus from preoccupation about their cancer to helping others.   

“The women in the study with breast cancer, in particular, had significant reduction in depression, significant reductions in their negative reactions in pain,” says Golant. “And they had significant increases in zest of life, spirituality, and finding new meaning.”

CSC chose to mirror traditional groups when creating its online support groups. After enrolling, patients are assigned to a professionally facilitated group that meets once a week for 90 minutes. Times are spread throughout the day and evening to accommodate different schedules and time zones. The only difference is, instead of talking face-to-face, all discussion is text-based.

Online groups are also proving to be an ideal medium to reach childhood and young adult cancer patients and survivors. Not only is this patient population relatively small—many hospitals, clinics, and cancer centers lack the numbers to provide face-to-face groups&mdash;but this age group generally spends a lot of time on the Internet. 

As a result, many online groups have emerged. For example, CSC developed Group Loop (

), and the Childhood Cancer Foundation in Canada created Teen Connector (

Another online support group geared toward teens is Cancer Really Sucks, sponsored by Gems of Hope, an organization whose mission is to inspire cancer patients and their families. While childhood cancer patients and survivors are welcomed, its purpose is primarily for teens dealing with a family member or friend going through cancer.  

Aside from message boards and private messaging, Cancer Really Sucks also hosts a live chat twice a month. These chats are generally teen-led and run. Sometimes, the teens don’t talk about cancer at all but just about what’s going on in their lives.

Using the Internet as a medium for online support groups, however, does pose its challenges. For one, it is impossible to interpret physical or non-verbal cues in a text-based situation, which can lead to miscommunication and conflict between participants. The anonymity and limited social commitment to online groups can also pose problems for professional moderators trying to perform an accurate clinical assessment of a participant’s psychosocial situation.  

The Internet also has been shown to have negative psychological effects in users who are overly dependent on it. In some recent studies, depression and social isolation have been associated with increased Internet usage, a danger Richard Hara says his organization Cancer

“There’s a concern that people who are socially isolated might become even more so if they rely entirely on an online group and sort of don’t avail themselves to some locally available resources,” says Hara, director of online services at Cancer

 assess individuals before suggesting they join an online group, making sure they have other resources available to them locally as well. Medical and ethical dilemmas also present themselves in online support groups. With groups that are not professionally facilitated, there’s always the danger of false information being passed around and promoted. Klemm believes that researchers are just beginning to scratch the surface of online support groups and their benefits. With so many different formats out there, she still has lots of lingering questions.“Is one format of online support better than the other? Or is one better than the other for certain categories of the population?” Klemm asks. “I think those questions still remain to be answered.”  

“It was a source of great information in the archives and of constant communication and reassurance from others throughout the country in the same dilemma,” says Lois. Online support groups can be especially helpful for those, like Dick, with rare cancers and for their loved ones, she says.

“You get a lot more contact and kind of a satisfaction or comfort level of knowing your family is not alone in all this,” Lois says. “There’s a lot you can learn from people who’ve been there, done that.”

) for a while, she (Dick never made any posts himself) also began to use the online mailing list for grassroots advocacy, another reason individuals often use online cancer support groups. She believed that people weren’t getting enough information about esophageal cancer and joined forces with others from the e-mail list to create the Esophageal Cancer Awareness Association (

). They began sending out a quarterly newsletter called “Swallow Tales.” They also created an awareness brochure, which they asked group members to distribute. 

“For me it was very rewarding, because I didn’t want anyone to ever be as completely as devoid of information—of help&mdash;as I was when Dick was first diagnosed,” she said.

Because Dick’s cancer metastasized to his liver, Lois Dickerman also became involved with the e-mail support group sponsored by YES, an organization for individuals with liver tumors. Through this group, the Dickermans met Meegan Hodges, a colon cancer patient with liver metastases.

The Dickermans’ relationship with Hodges, from Penrith, Australia, shows another benefit of online support groups: without the YES group, Hodges would never have gotten the support from a family half-way across the world. 

 “It’s good because you’ve got information coming to you that you wouldn’t have had available to you at times,” she says. “There are people who are going through the same thing, people asking questions all the time. And with so many other people around, you’ve got the opportunity to learn.” 

Online support groups flourish, providing ample meeting time, space, and care.

The Great Connection

While nearly 80 percent of children treated for cancer survive, these survivors tend to face a variety of health problems as they grow older. Research presented at the American Society of Clinical Oncology meeting in June showed that one of these problems—cardiomyopathy, a condition where the heart cannot pump properly&mdash;was tied to a specific gene and drug dose. 

The research shows that survivors who carry particular inherited variants of the carbonyl reductases (CBR) gene and received low doses of anthracycline chemotherapy were more likely to develop heart problems than those without the CBR gene. 

Currently, anthracyclines form the backbone of childhood cancer therapy, as anthracyclines are incorporated into the chemotherapy regimen of more than 50 percent of childhood cancer patients. Researchers already knew that there was a dose-dependent relationship between anthracyclines and congestive heart failure and that the two-year survival after developing congestive heart failure was less than 50 percent. 

“But what we also noticed is that certain children who receive very low doses develop heart failure,” says Smita Bhatia, MD, MPH, of City of Hope National Medical Center and study lead. “We were therefore interested in knowing what increased the risk of anthracycline-related cardiomyopathy.”   

In a case-control study, Bhatia and her colleagues found that in patients who received low drug doses, those with the CBR1 variant were about five times more likely to develop heart problems, while those with the CBR3 variant were about three times at higher risk. 

Researchers believe that this discovery could lead to a more personalized approach to preventing toxicities associated with anthracyclines—doctors can screen patients for the CBR gene, and then prescribe non-cardiotoxic alternatives.

Researchers found that in some childhood cancer survivors, a late effect called cardiomyopathy, a condition where the heart cannot pump properly, was tied to a  specific gene and drug dose. 

Gene Linked to Heart Failure

I wasn't old enough to donate blood until my senior year of high school, and so for about two years I got to watch my classmates head off to the gym and return with bandaged arms, pleased with themselves for donating a pint of blood that might save someone's life. When I finally turned 16 years old (the minimum age to donate blood), I learned you had to be 110 lbs--a weight I've still yet to reach.  So, I resigned myself to only being a donor at death, through organ donation. I didn't even sign up to be an organ donor until after college when my uncle had cirrhosis of the liver, and I became a witness to how long individuals sometimes wait for the match that can save their lives. But recently, I was introduced to the concept of 

. In retrospect, it makes sense--I've heard of people donating their kidneys or lungs while alive and well. But the reality of being a living donor didn't click for me until I began working on the Fall issue's People Report. Highlighted is 11-year-old Shannon Tavarez, who is in need of a bone marrow transplant in order to survive her diagnosis of acute myeloid leukemia. After kidneys, bone marrow transplants are the most common among living donors. Thousands have signed up on the 

 since word spread about Tavarez and other cancer patients like her. And while there are 

 with it, signing up to be a bone marrow donor is really very simple--no needles, just a cheek swab and a health questionnaire.  But that doesn't mean the decision to become a living donor should be taken lightly--it's definitely a different ballpark than donating blood.   According to the National Marrow Donor Program, last year almost 5,000 bone marrow transplants were performed in the U.S. But not everyone who needs a match gets one; currently only 4 out of 10 patients find a matching donor. The donor and recipient have to be close genetic matches (based on human leukocyte antigens)--a 25 percent chance among relatives. In about 70 percent of patients, a non-family donor is needed.  For unrelated donors, finding a match is highly reliant on the donor and recipient having the same ethnic and racial background. For Caucasians, the chances of finding a match are more than 90 percent. For blacks, Hispanics, and most Asians, the chances drop to around 60 percent.  Part of the reason for this is that minorities make up a small percentage of the donor registry: Latinos, 10 percent and blacks, 8 percent, in the Be the Match registry. And the odds get even smaller if you're of mixed heritage like Tavarez. I never looked into being a bone marrow donor because I was under the impression that it was an excruciating process (what can I say, I watch a lot of House). But honestly, about 75 percent of transplants are peripheral blood stem cells (PBSC) donations, which is a nonsurgical procedure where your blood-forming cells are harvested for transplantation. And even in the other type of donation (bone marrow donation) which is surgical, you're put to sleep while doctors extract liquid marrow from your pelvic bone; the most you'd feel afterwards is a few days of soreness.  Becoming a living donor is something I didn't even consider, but once I understood the need it's something I didn't think twice about. In less time than it took me to write this blog, I 

registered for the National Marrow Donor Program

 and am eagerly waiting for my swab kit to come in the mail. (You can also register at a local donor center, or while not as common as blood drives, at bone marrow donor drives. See 

 for more info.)I plan to encourage my family and friends to consider registering, too. Will you join me?

Bunmi Ishola

Not Just the Blues

The Great Connection

Gene Linked to Heart Failure

Why I chose to be a living donor

Latest News