When the Nurse Becomes the Patient
Facing cancer at the City of Hope
Cancer. The word alone still summons dread, and it’s not hard to understand why people once spoke it only in whispers. Despite the new weapons medical science has developed to fight cancer, it remains a difficult and often lethal affliction. Nurses are no strangers to serious disease, but that doesn’t make things any easier when you’re the one receiving the diagnosis.
What happens when the caregiver becomes the patient?
Anne Bourque, RN, has worked at City of Hope since 1980, beginning as a nursing supervisor and eventually rising to her present position as clinical nursing director of hematology and hematopoietic cell transplantation. She is directly or indirectly responsible for more than 350 nurses.
In 2002, she became alarmed after experiencing unexplained rectal bleeding, which can be a symptom of colorectal cancer (see the sidebar on p. 18). Colorectal cancer is often missed at its earliest stages because many of its symptoms are shared with other, less serious gastrointestinal issues, which is why the American Cancer Society recommends regular colonoscopies for people over 50.
Bourque was then only 47, but decided she was better safe than sorry. Concerned about her privacy, she opted to go to a gastroenterologist outside City of Hope, hoping that the results would reassure her that there was nothing to worry about.
Unfortunately, that hope was soon dashed. “He was able to tell me on the table that I had rectal cancer,” she says.
THE TOUGHEST TIME
As difficult as a cancer diagnosis can be, Bourque says “the hardest and scariest time is not knowing the stage the cancer has progressed to or the treatment plan.”
Cancer staging is a complex process. Cancer can spread through the blood and lymphatic system as well as into nearby tissue and organs, so colorectal cancer may spread into the liver or even the lungs. Estimating the stage of the cancer requires a series of tests to assess the size of the tumor and how far it has spread.
With some cancers, doctors don’t actually know the exact stage until after surgery, but these test results determine the treatment strategy and the patient’s chances of survival.
After receiving her initial diagnosis, Bourque abandoned any thoughts of keeping her treatment separate from her work and returned immediately to City of Hope. One immediate advantage of her position was that within 24 hours of her diagnosis, she was able to meet with a surgeon and noted hematology/oncology specialist Stephen J. Forman, M.D., FACP, the chair of City of Hope’s hematology and hematopoeitic cell transplantation department. (The benefits of professional courtesy!)
The tests, which included an abdominal CT scan and a chest X-ray, determined that Bourque’s cancer was probably Stage IIA, meaning that the tumor had spread into the serosa (the outer layer of the rectal wall), but not through it.
That was the first piece of encouraging news: According to the National Cancer Institute, the five-year relative survival rate for Stage IIA rectal cancer is 80 percent or better. “The doctors definitely gave me hope,” Bourque says. “I knew I probably wasn’t going to die unless something went wrong.”
A LITTLE KNOWLEDGE
The treatment plan for Stage II rectal cancer involves six weeks of neoadjuvant radiation and chemotherapy to try to shrink the tumor prior to surgery.
Chemotherapy has an ugly reputation, but from Bourque’s professional experience, she knew that some types of chemo are significantly more toxic than others. Hers involved 24-hour-a-day infusion of fluorouracil (5-FU), an anti-metabolite that blocks cancer growth by interfering with the creation of RNA and DNA. Although 5-FU can have unpleasant side effects, it’s among the milder forms of chemotherapy.
While that knowledge was comforting, Bourque was well aware that with cancer treatment, too much knowledge can quickly become overwhelming for the patient. For the sake of her own peace of mind, she decided to limit her research. “Someone tried to be helpful by giving me a 6-inch stack of things to read. They went into a drawer,” she says.
Bourque did get sick after concluding radiation and chemotherapy, perhaps because the 5-FU increased her susceptibility to infection (one of the drug’s potential side effects). However, rather than worry about the possibilities, she decided to put her trust in her care team. “I kind of got on the train and said, ‘Okay, you’re going to live, you’ve just got to get through this,’” she says.
SURGERY AND RECOVERY
Chemotherapy and radiation are usually only a prelude to surgery to remove the tumor. Nearby lymph nodes are removed at the same time so that doctors can assess whether the cancer has spread to the lymphatic system. With Stage II rectal cancer, the surrounding tissue must also be re-sectioned after the tumor and lymph nodes have been excised to ensure clear margins around the tumor site.
Bourque had had other surgeries before, but she says her cancer surgery was by far the worst. “I didn’t realize how bad it would be,” she says. “The surgery was brutal.”
In some cases, cancer surgery may be followed by another round of chemo and radiation therapy, but Bourque’s postoperative pathology reports were very encouraging, revealing that her lymph nodes were negative and the tumor had been completely removed.
Nonetheless, recovery was a lengthy process. During this time, the normally social and happy Anne Bourque preferred not to have visitors. “I knew if people came to visit, I would feel the need to chat, smile and be positive, and truthfully, I wasn’t up to it.”
The staff put a ‘no visitors’ sign on her door and every single person honored that. “I appreciated that they were so respectful of that boundary,” Bourque says.
It was three months before she felt well enough to return to work.
A NEW CONNECTION
After successful treatment, cancer experts are careful to use the term “cancer-free” rather than “cured” because there is always some chance of recurrence. “People say after five years you’re cured, but I’ve seen it come back later in my patients,” says Bourque. “But every year you’re cancer-free, the odds of the cancer returning drastically decrease.”
Bourque has now been cancer-free for almost 13 years and her memories of the diagnosis and treatment have begun to fade in intensity. Still, she hasn’t forgotten the care and compassion she received. “I will always have a soft spot in my heart for each of those people who cared for me,” she says.
She recognized during her treatment that caring for “the boss’s boss” was an unenviable assignment, but each of her nurses went above and beyond. “The staff here are and were outstanding,” she says. “It takes a special person to be an oncology nurse.”
WORDS OF WISDOM
What words of wisdom does a nurse who’s survived cancer give to others who find themselves in her position? Bourque offers the following:
1. Warning signs. Don't overlook or ignore unusual or abnormal symptoms, and don’t put off a visit to the doctor due to fear or denial.
2. If you can, go to a cancer center for treatment. Most oncology treatment in this country is delivered in community care centers, and the commitment to standards of care is excellent. However, a comprehensive cancer center will have the most updated clinical trials, research, treatment and curative regimens.
3. Know the care plan. Once I understood the treatment plan, it was much easier. Now when I get calls from patients who are terrified about their diagnosis, I say, ‘As soon as you know the plan, you will feel better.’
4. Know your own information needs. Some patients find it comforting to do a lot of research. Others feel overwhelmed by the vast amount of information that comes along with cancer care. The point is to make the information useful to you and to not let it hinder your progress.
5. Bring questions or concerns to your care team. At the same time have confidence and trust that they are expert cancer clinicians and will provide you with excellent care. Open, honest, direct communication is key.
6. Nurse navigators. Finally, take advantage of a formal resource which I didn't have 13 years ago: nurse care coordinators and navigators whose job it is to help seamlessly coordinate your treatment. In addition, your insurance company will also likely have a coordinator (often a nurse) to assist you.
COLORECTAL CANCER SYMPTOMS
The odds of surviving colorectal cancer are very good if the cancer is detected early. Unfortunately, many of the symptoms are easy to mistake:
◗ Unexplained weight loss
◗ Persistent or recurrent constipation or feelings of bloating
◗ A feeling of being unable to completely empty the bowels
◗ Rectal bleeding or blood in stool.
Colorectal cancer is typically detected during a colonoscopy, although there are a variety of tests for it. Since the risk of this type of cancer increases with age, regular colonoscopies are a wise precaution if you’re over 50 or if you have a history of certain conditions like ulcerative colitis or colorectal polyps. High-fat diets or smoking can also increase your risk of this type of cancer.
Aaron Severson is the associate editor of Working Nurse magazine.
This article is from workingnurse.com.