Survivorship Planning Should Start at Diagnosis

Many aspects of going through cancer can be overwhelming or difficult to navigate, so it is important that survivors have resources to help them navigate from the point of diagnosis to beyond the moment when their treatment ends.

“We define a survivor as a person who was just diagnosed with cancer — whether they’re stage 1 or stage 4. And you look at survivorship literature, it talks a lot about people who cured their disease and moved on,” Nancy Corbitt, BSN, RN, an oncology nurse at the University of Maryland Medical Center, said in an interview with CURE. “But I believe strongly that anyone diagnosed with cancer deserves the resources I have to offer them.”

Corbitt recently presented at the first of seven Anaplastic Anemia and Myelodysplastic Syndome (AAMDS) conferences, sharing the available tools and resources for people in all stages of their cancer journey, and why it is important to have a survivorship care plan in place, especially as fewer people are dying from the disease.

Empowering Patients

There are many aspects of cancer survivorship that contribute to a happy and healthy life. In her presentation, Corbitt mentioned the American Cancer Society, which offers information and resources in the following areas: living well during treatment; finding support during treatment; moving on and being healthy after treatment; managing cancer as a chronic illness; and understanding recurrence.

“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.”

For many patients, technology will continue to shape their cancer journey, 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.

It also might help them bridge uncomfortable conversations, like sexual dysfunction, that come along 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, 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.

Empowering Caregivers

While there is an abundance of resources and support programs for patients with cancer, it is equaly important to care for and empower caregivers, too, according to Corbitt.

“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 about caregivers asking for help, caring for themselves, going to medical visits with their loved ones and more.

Dealing with the Cost of Cancer

For many Americans, cancer, unfortunately, is not an affordable disease to have. Corbitt also discussed resources that can help patients and their families get through this costly and stressful time in their life.

Nowadays, most cancer centers have financial navigators that will work with survivors to help them better understand cancer’s cost and insurance payments and policies, drastically reducing the stress of facing financial toxicity.

“As far as survivors go, we’re going to have more of them, so it’s really important to bring these resources into the local community.”

Navigation After Treatment Ended

For many survivors, the stress does not end after their last treatment. In fact, transitioning to post-cancer survivorship can bring a whole new bundle of anxiety-inducing circumstances, such as patients seeing the doctor less frequently and transitioning care from an oncologist back to a primary care physician.

“We’re trying to give them the courage to go back. So, 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, discusses living well after cancer. It 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 ease their stress and be empowered to move through their cancer journey more confidently.