From diagnosis to post-treatment, survivors should have access to resources that help them navigate through their cancer journey.
Cancer can be overwhelming and difficult to navigate. From the point of diagnosis to beyond the final treatment, survivors need resources to help them navigate through their cancer journey. That's where survivorship planning comes in.
Oncology nurse at the University of Maryland Medical Center, Nancy Corbitt, BSN, RN, says, “We define a survivor as a person who was just diagnosed with cancer — whether they’re stage 1 or stage 4.” Survivorship literature, says Corbitt, “talks a lot about people who cured their disease and moved on, but I believe strongly that anyone diagnosed with cancer deserves the resources I have to offer them.”
At the first of seven Anaplastic Anemia and Myelodysplastic Syndrome (AAMDS) conferences, Corbitt recently spoke about the available tools and resources for people in all stages of their cancer journey. She notes that it is important to have a survivorship care plan in place, especially as fewer people are dying from the disease.
For many patients, knowledge — and access to that knowledge – is key. In her presentation, Corbitt referenced the information and resources available via the American Cancer Society, on topics that range from living well during treatment, finding support during treatment, moving on and being healthy after treatment, understanding recurrence and more.
“We want to focus on empowering patients to take charge of their own care,” Corbitt said. To do this, she added that when it comes to available resources, patients need to educate themselves. “Look for resources, be it books, the internet or support groups.”
Today, technology is a valuable resource in the cancer journey of many patients, offering a means to reach out to others who might be in a similar situation, as well as easy access to information regarding their treatment and potential side effects.
Technology may also help patients with uncomfortable conversations, like those about sexual dysfunction, that often come with many cancer diagnoses. “A lot of people don’t want to talk about that,” Corbitt said. “So at least if I bring it up, people will listen.”
Through the University of Maryland Medical Center’s patient portal, for example, patient-focused modules provide a resource for patients who may be facing sexual dysfunction, as well as fear of recurrence, healthy living and mindfulness. “It’s something they can do at home,” Corbitt said.
While there is an abundance of resources and support programs for patients with cancer, Corbitt says, it is equally important to care for and empower caregivers, too.
“Caregiver burden is a real problem that we need to address,” Corbitt said. “It’s OK to take an hour for yourself and care for yourself, and I think a lot of caregivers feel guilty or that they cannot leave the person they are caring for. That’s something we need to focus on.”
One of the resources that Corbitt recommends is the National Cancer Institute’s booklet titled, “Caring for the Caregiver,” which offers tips and guidance for caregivers on asking for help, caring for themselves, and going to medical visits with their loved ones.
Dealing with the Cost of Cancer
Unfortunately, for many Americans, cancer is not an affordable disease to have. To address this, Corbitt also discussed resources that can help patients and their families get through this costly and stressful time.
Nowadays, most cancer centers have financial navigators that will work with survivors to help them better understand the costs they may face, in addition to their insurance payments and policies, drastically reducing the stress of facing financial difficulties.
Navigation After Treatment Ended
For many survivors, the stress does not end after their last treatment. Post-cancer survivorship can bring a host of new anxiety-inducing circumstances, such as seeing the doctor less frequently and fear of recurrence.
“What we do is send the end of treatment summaries to not only the survivors, but to the community providers so that they know what’s going on,” Corbitt said.
End of treatment summaries describe what medications and treatments a patient received. A survivorship care plan, which patients also receive at the end of their treatment, guides patients through healthy habits, as well as surveillance plans for any possible recurrences — something many survivors fear.
“A lot of patients face fear of recurrence. One patient said to me, ‘Every three months, I have to get a scan done, and every three months I get afraid the cancer is going to come back,’” Corbitt said.
But, by seeking help and resources throughout every stage of cancer, survivors and caregivers can be empowered to move through their cancer journey more confidently.