Quality of Life: Lean on Me

A cancer diagnosis is among the most devastating news a person can receive. Suddenly, every other problem that once seemed so significant pales in comparison to this discovery. Cancer patients often question: Will their treatments send their families into financial disaster? Will they have painful side effects from treatment? Will they lose their hair, breasts or ability to function like a normal adult? And, perhaps the most glaring uncertainty of all: Will they live?

According to Gail Gazelle, MD, FACP, FAAHPM, assistant clinical professor at Harvard University, Boston, and the president of Palliative Care Associates, a nonprofit organization that helps terminally ill patients increase their quality of life, “People with cancer are going through something unique. They don’t get a course on it; they don’t get classes. They’re often on an emotional rollercoaster, and their life is in the balance.”

This ambiguity often leads cancer patients into depression, causing them to mentally surrender to the disease even before their treatments have begun. And, sadly, the situation often worsens when cancer patients attempt to put on a tough facade for others. On the outside they may appear confident, telling loved ones that they’re going to beat this disease and come out alive. But inside, they’re in complete disarray. Because of this, cancer patients need people with whom they can relate – others who fully understand what they’re going through and can lend a supportive ear.

One option that’s becoming increasingly popular among cancer patients is joining a support group. Congregating both in person and online, support groups allow cancer patients to share their hopes and fears with others battling the debilitating disease. And for patients standing on the brink of life and death, this opportunity can be particularly therapeutic.

Maria Kelly, MD, chief of the radiation oncology department at University of Virginia, Charlottesville, agrees with Gazelle and says, “Support groups can help patients learn that they aren’t alone and [can] provide them with space to discuss issues that they may feel uncomfortable talking about with a family member or friend.” In addition, Kelly says, these groups can also “help patients process difficult issues like end-of-life decisions and relationships with loved ones. And support groups can [allow] patients to set goals and be proactive in their cancer treatment.”

Kelly also believes that a successful battle with cancer shouldn’t simply be measured by one’s cure rate. Rather, she says, “it’s a complex experience of successfully integrating cancer, treated or active, into your daily life and giving up as little of your physical and emotional time as possible to the disease.” Although Kelly recognizes that this is not an easy feat, she says it takes everyone involved with the cancer patient to help them succeed, and “support groups play a key role in living with cancer.”

Separating Patients

Clearly, all cancer patients are not the same. For instance, a 35-year-old woman diagnosed with stage IV breast cancer has little in common with a 75-year-old man battling stomach cancer. Tragically, the woman may have young children and a shell-shocked husband in the mix. And as a result of her recent mastectomy and hair loss, the woman may be questioning her sexual attractiveness. She also fears for her children: Will she ever see them graduate, get married and have children of their own?

Only other breast cancer patients can truly understand questions such as these. Although the elderly man and the woman are both victims of cancer, their situations are worlds apart.

“Ideally, there would be groups for different stages of disease,” Gazelle says. She also believes certain cancers, such as breast and gynecologic malignancies, often necessitate separate support groups. “I think breast cancer is so important because it’s so common. Certainly for radiation oncologists, they see lots of breast cancer patients, and these issues are going to be unique.”

Similarly, in Kelly’s experience, she has found that support groups should be tailored around the individual patient’s needs. “I think you need to be careful about putting a newly diagnosed early-stage patient in a group of more experienced patients with more advanced disease,” she says.

Further, Kelly says, “You also need to be sensitive to a patient’s perception of support groups and respect their wishes. It has been my experience that at initial diagnosis, if there are emotional issues, they are best served by one-on-one counseling with a trained psychologist … After the patient has a chance to adjust to the diagnosis and begins treatment, they are more open to the role of support groups.”

Another reason that experts believe support groups should be separated according to stage and type of cancer is because “people who are newly diagnosed will most likely find it very hard to be around people who have recurrent disease,” Gazelle says. “Here they are thinking they’re going to be cured, ‘I have early cancer. I’m going to beat it.’ So, speaking to a person suffering a relapse could be devastating to somebody who’s newly diagnosed.”

A Family Affair

As devastating as a cancer diagnosis is for patients, it’s often the families who endure the brunt of the heartache. Simply stated, cancer tears families apart. Besides suffering financial and emotional strain, families of cancer victims sometimes lack an outlet in which they can fully express their pain. They might not want to burden their friends with their grief – and, as a result, hold everything in.

But, clearly, holding in one’s sorrow is not the best option. Like patients, relatives can greatly benefit from joining a support group for other families dealing with cancer. Depending upon the geographical area, some centers offer support groups just for the friends and family, while others – mainly in rural areas – include both patients and loved ones.

Still, many experts believe it’s important to separate family support groups from those catering specifically to the patient. “And when you think about it, Gazelle says, “why you would have a group that didn’t allow family members, I think the answer is that there may be issues that are sensitive, that people feel like they can’t share with their family present.” Gazelle cites body image and sexuality as issues that could potentially be taboo in mixed company.

According to Gazelle, “The whole idea of a support group is to create a very comfortable, non-judgmental environment where people can be real about their experience and get support. So, anything that’s a barrier to that could be problematic.” Because of this, Gazelle says mixed support groups require experienced facilitators, “who could set limits and boundaries.”

Online Options

In light of recent technological advances, cancer patients now have the option of participating in online support groups. This alternative is particularly appealing to patients who live in rural areas or favor the anonymity that the Internet allows.

Also, cancer patients often don’t have time to commit to scheduled group sessions. “People who are newly diagnosed with cancer are busy,” Gazelle says. “All of the sudden they have all of these doctors’ appointments – appointments for imaging, radiation therapy, chemotherapy, maybe a biopsy here and there. So some people don’t have the time to go to a support group, even if [it] would be very helpful to them.”

The solution: Internet-based support groups. Patients can log in online and share feedback with other cancer victims at their own convenience and leisure. Further, patients with less gregarious personalities might prefer talking online to face-to-face interaction. And for patients undergoing potentially embarrassing treatments, such as ostomies for colon cancer treatment, online support groups can be especially beneficial.

And let’s face it: Not all cancer patients are comfortable discussing their personal lives with a room full of strangers. Some people are much more candid in an online forum. They may be more willing to discuss the gritty details of their disease, such as problems with incontinence or impotence. Behind the mask of their computers, patients may be encouraged to talk about subjects they would feel too embarrassed to mention in a face-to-face group setting.  

Some popular Web sites offering online support are www.cancercare.org, www.thewellnesscommunity.org, www.oncochat.com and www.gillettecancerconnect.org. Patients and loved ones can also search the American Cancer Society and National Cancer Institute’s Web pages for more information on this subject.

— Keri Forsythe is assistant editor of RT Image. Questions and comments can be directed to kforsythe@rt-image.com.