New Routine: Caring for those with metastatic disease calls for flexibility, commitment.
A diagnosis of prostate cancer in April 2010 left Tim Daugherty and his wife, Debbie, with serious concerns but a relatively positive outlook. He underwent a radical prostatectomy followed by hormone therapy, and the Florence, Ore., couple were ready to move on.
Then came the difficult news that his cancer had spread to his lymph nodes.
“We thought he would get the surgery, and it would be over, so this definitely took things in a different direction,” says Debbie Daugherty, who has been her husband’s caregiver throughout his cancer experience. “It went from a oneshot deal to 44 radiation treatments, tri-monthly injections and having to take pills for the rest of his life. It was a huge change.”
Providing care to someone with cancer is never easy, but a diagnosis of metastatic disease can be overwhelming for all concerned. As the disease progresses, relationships change, family responsibilities shift, and stress and anxiety mount.
While localized cancer often can be eliminated with surgery, radiation or chemotherapy, metastatic disease is usually an incurable, more vexing problem. “A diagnosis of metastatic disease does not automatically mean it’s a death sentence,” says Hoda Badr, PhD, assistant professor in the department of oncological sciences at Mount Sinai Medical Center in New York.
“Depending on the type and location of the cancer and the treatments that are available, many individuals with metastatic disease can expect to live a longer life and experience a better quality of life than they did in the past.”
Certain metastatic cancers, such as lymphomas and testicular cancer, are generally more treatable and curable than others. Those viewed as incurable but often manageable include metastatic breast, prostate and colon cancers.
Paul Dougherty of Norristown, Penn., is among those living with a promising prognosis. At age 29, after receiving a diagnosis of testicular cancer that had spread to his abdomen and left kidney, he underwent surgery and several months of aggressive chemotherapy. The cancer returned four months later, requiring another three months of chemotherapy, says Lynn Dougherty, his mother and primary caregiver. Today, two years out from his last chemotherapy treatment, he is doing well.
But during the worst of Dougherty’s metastatic disease, the family’s “new normal” became whatever was required to help him, including not only driving him to medical appointments, picking up his medications and making sure he took them properly, but also setting up a visiting nurse and physical therapy times. “I had to learn how to give Paul shots, clean and pack his incision, and clean and change his drainage tubes,” his mother says. “These are things I never thought I could do, but when it’s your son, you just learn to do it.”
There were also financial concerns as Dougherty’s parents pitched in to help pay for his health insurance, car insurance and medications. “My husband had been laid off from his job earlier that year, so it was not easy,” she recalls.
I had to learn how to give Paul shots, clean and pack his incision, and clean and change his drainage tubes.
The caregivers of patients with metastatic disease also face big changes in family roles and responsibilities, as well as social isolation, while they devote more time to caregiving.
“I do all the yard work, housework and any repairs that need to be done. I also manage the finances and medical bills,” says Jennifer LeBret-White of Wellpinit, Wash., whose husband, Kevin, has been dealing with metastatic colorectal cancer for eight years. “We do not attend many social events. It’s difficult to commit to anything too far in advance because often we end up canceling at the last minute.”
There are strategies that can help patients and caregivers deal with the challenging issues frequently associated with metastatic disease. Foremost is to foster a climate of communication in which all parties are honest regarding their emotions and needs. “This creates a more harmonious home environment as well as better adjustment for the patient,” Badr says.
According to Walter F. Baile, MD, professor of behavioral science and psychiatry at M.D. Anderson Cancer Center in Houston, caregivers too often try to shield their loved ones from negative thoughts and emotions in the mistaken belief that it will make their condition worse. “There will be days when patients may feel hopeless, and we just have to be there for them,” he says.
That’s why caregivers are advised to communicate a sense of availability and a willingness to discuss concerns rather than create barriers and deny that the patient may have negative emotions that they want to talk about. “It’s important for the caregiver to acknowledge all of the emotions that the patient has, not just the positive ones,” Badr says. “When you focus solely on the positive, it shuts down the patient’s ability to confide in you about a fear of the future or the negative emotions they might have.”
Caregivers should also refrain from making too many decisions for their loved ones because it robs them of their autonomy. “The one vestige we have left at the end of life is to be able to make decisions about our own health care,” Baile says. “Don’t take that away from the patient.”
When you focus solely on the positive, it shuts down the patient’s ability to confide in you about a fear of the future or the negative emotions they might have.
Decisions regarding clinical trials are also best left to the patient, Baile adds. “The family may push for clinical trials, but often they’re pushing for their own motives and don’t always have the patient’s best interest at heart,” he says. “Patients sometimes feel guilty because if they say no they are adding to the family’s suffering. But families need to be sensitive to what the patient wants, even if they don’t like it. After all, it’s the patient’s disease.”
Indeed, treatment of any kind can have a huge impact on the caregiver, Badr says. If treatment has a curative intent, she notes, the caregiver knows that at some point the patient will improve and the need for caregiving will diminish. But if there is no curative intent to treatment, the caregiver must focus on how to be an asset and help the patient manage symptoms at home. “The caregiver is another set of eyes and ears who can help the patient keep in mind what their healthcare team has recommended,” she says.
Even when metastatic disease appears curable, the stress of caregiving can be overwhelming. Baile encourages all caregivers to take advantage of local support groups to help them deal with issues, such as social isolation and economic strain. “Support is extraordinarily important,” he says. “You can’t take care of other people unless you take care of yourself.”
Tim and Debbie Daugherty know firsthand the value of a support network. Throughout his treatment they attended regional meetings of the international prostate cancer support organization Us TOO, during which patients discussed their treatments and life experiences.
Take care of yourself mentally and physically, and don’t be afraid to reach out for help. The patient is No. 1, but they can’t remain No. 1 if you’re not a high No. 2.
“I found that very helpful,” Debbie Daugherty says. “They taught me how to organize test results and financial documents, what questions to ask, what information to share, what legal documents to gather for our family It was also good just to hear other people talk. You gain strength and knowledge from that.”
Her advice to other caregivers is simple: Take care of yourself. “If we’re not OK to give care, then someone else is going to do it for us, and that’s going to make us feel even worse because we want to do it,” she says. “Take care of yourself mentally and physically, and don’t be afraid to reach out for help. The patient is No. 1, but they can’t remain No. 1 if you’re not a high No. 2.”