Knowing what you can do, might just save your life
By Morgan Lord
According to the Mayo Clinic, about half of all men and a third of all women in the United States will receive a cancer diagnosis at some point in their lives. Whether you’re a man, woman or a child, a diagnosis like this is scary, confusing and sometimes overwhelming.
“The beginning of the process is the most stressful,” says Dr. Bruce Gershenhorn, a medical oncologist at Cancer Treatment Centers of America (CTCA). “You don’t know [whether] you’re going to die, how much pain you’ll have to endure or what your options are.”
After receiving a cancer diagnosis, one-third to one-half of cancer patients experience lasting psychological distress, like depression and anxiety, according to the University of Wisconsin School of Medicine and Public Health. That’s why the speed at which you get things in motion, postdiagnosis, is key.
This sort of stress should be taken seriously. “The stress and the fear of the unknown is the worst part, so you’ll want to seek information and a plan from a reputable source, and do it quickly,” Gershenhorn says.
Consider the time frame
When individuals receive a diagnosis, the first thing many people do is go online and scour Google to dig up as much information as they can. And while it’s good to research, you can possibly find information that is untrue or doesn’t necessarily relate to your situation, Gershenhorn says.
With treatment beginning sooner than later a priority, you should seek out an expert right away to get the facts about your specific diagnosis. Then decide which care facility is best for the diagnosis at hand. And always follow that up with a second opinion.
“It’s much better to get a second opinion before you start any treatment,” says Dr. Pamela Kaiser, medical director at Oncology Specialists (OS), a treatment and research center located in Park Ridge and Niles. “Because once treatment begins, then you can’t go back.”
Consider your concerns
Once you have your initial visit, where you hopefully get some questions answered, you’ll want to keep lines of communication open.
Some common concerns many patients have are about the type and length of treatment, says Kaiser.
Ask about whether the treatment will include surgery, chemotherapy and radiation. Or does the diagnosis only require one or two of those approaches? What will the side effects be like and what is the likelihood that you’ll be able to do all of the things you want and need to do like go to work or take care of your children?
If you can’t call your doctor 24/7, write down any questions you may have, so that when you can speak to the doctor, you have not forgotten any of your concerns.
Consider the team
“Getting the right team around you helps miles with alleviating stress,” Gershenhorn says. “As an oncologist, I typically take on the quarterback role and lead the cancer treatment plan, but it takes more than me. A team of people collaborate to carry out the plan decided upon by the patient.”
When Gershenhorn explains a patient’s diagnosis, he usually whips out a dry-erase marker and draws pictures on his office board. He wants to keep everything as clear as possible and finds that most people connect with and understand pictures. During the initial hour-long visit, he goes through their health history, scans and blood work, and discusses the best options, plans and alternatives. He also always leaves plenty of time for questions.
“Patient empowerment revolves around education,” Gershenhorn says. “Arming patients with knowledge of both conventional and complementary anticancer therapies is critical. Empowerment allows patients to have control over a situation in which they may sometimes feel powerless. I believe this philosophy motivates patients to be more actively involved in decision making and not just passive participants in their care.”
It seems that in the past, the mind- set was more of a doctor-knows-best mentality, but now you can know what’s best for you.
According to the National Cancer Institute, emotional and social support can help to cope with this stress, including meditation, counseling, group support, exercise and medicine. If you’re feeling stressed, be sure to talk to your oncologist about working with a mental health professional, too.
Consider family and friends
Bring a person close to you to the first visit to be a second set of eyes and ears. Upon the first visit, if there is no caregiver with the patient, some oncologists ask to call someone in the family on the phone to listen in on the meeting. “It’s important for people around the patient to feel empowered, too,” says Gershenhorn.
Let friends and family help you—you shouldn’t have to deal with this all on your own. When cancer happens to an individual, it happens to the family, too.
Take comfort in connecting with other individuals with cancer. Sometimes you’ll feel alone in this, but, you aren’t; there are thousands of people who have gone through, or are going through, what you’re going through, and it could help to talk to people who have been in your situation. A good resource to start with is the American Cancer Society’s Cancer Survivors Network. Locally, there are support organizations like Gilda’s Club Chicago and Imerman Angels. (For more on Imerman Angels, see page 59.)
Consider clinical trials
Talk to your oncologist about taking part in clinical trials. The Gateway for Cancer Research, a nonprofit organization that funds patient-centered clinical trials, has funded over 103 innovative cancer research clinical trials and has tight-knit relationships with doctors across the nation.
And the U.S. National Institutes of Health has a special website, ClinicalTrials.gov, that can show you the breadth and depth of ongoing clinical studies.
Kaiser says that a patient should ask what trials are available and if it makes sense for them to participate or not.
In a clinical trial, patients follow a protocol that is either interventional (a patient receives a specific treatment, and the results are documented) or observational (a patient is watched for specific outcomes that are documented), according to The Gateway’s website.
Before, during and after all is said and done with your, or your loved one’s, cancer treatment, the most important thing is to have hope for the future.
“Hope is a vision of a better future for yourself,” Gershenhorn says. “It’s our job to teach patients about their options and let them know that we’re here to battle with them through cancer, and support them in any way we can.”
Published in Chicago Health Summer/Fall 2013