Cancer survivorship isn’t what it used to be
Brian Carey, who was diagnosed with stage III colorectal cancer nearly two years ago, considers himself a fighter rather than a survivor.
“If I’m a survivor, it almost makes me feel like I was a victim, and I wasn’t a victim; I was a fighter,” he said. “Something was thrown at me, and I said ‘I gotta get through it.’”
Carey’s fierce determination to beat the disease is shared by many who now are focused on not only surviving after treatment, but thriving.
The growing number of those surviving cancer with all that it entails has led to a new focus in cancer care, beyond diagnosis and treatment. The American Cancer Society’s definition of cancer survivorship has grown from a focus on the time from diagnosis to the end of initial treatment, to a transition from treatment to extended survival and long-term survival. It now includes those who live without cancer the rest of their life, others who live with cancer as a chronic disease and those who may experience recurrence or subsequent cancer.
Guiding survivors through surveillance, follow-up, check-ups and testing is an area of oncology and medicine that is growing and evolving, said Daniel Canaday, MD, a radiation oncologist at Cape Cod Hospital and Falmouth Hospital.
“We’re seeing a lot more long-term survivors and the majority of these people are out more than five years, so we’re starting to recognize and deal with more and more long-term side effects of both cancer and treatment that we didn’t have to deal with 10 or 20 years ago because people, unfortunately, just were not living that long,” he said.
“There is growing emphasis to incorporate survivorship as an overall part of cancer care” Dr. Canaday said. “When a patient completes their therapy, one of the appointments is to meet with a doctor or nurse practitioner. They will go over survivorship – which means answering questions about what they can expect in the long-term, what tests they will need, and how long they will have to do that. This information will be forwarded to their primary care physician who will play a huge role in maintaining that type of surveillance and making sure they get the tests they need.”
Estimates from the Centers for Disease Control and Prevention in 1995 indicated there were seven million cancer survivors in America and, according to the American Cancer Society, by 2015, that had doubled to 15 million, said Dr. Canaday.
“By 2030, it is estimated we’re probably going to have about 22 million active survivors in this country.”
Cancer Survivors Day
Traditionally, Cape Cod Healthcare has celebrated survivorship with an annual Cancer Survivors Day. It was canceled last year, due to the COVID-19 pandemic, and has been canceled again this year. Dr. Canaday said they are definitely making plans for this special day and celebration event next June 2022.
“We were hoping it might happen this year but with the restrictions in place and out of preponderance of caution, we are going to plan to have it next year,” said Dr. Canady. “On a personal note, as physicians and nurses, we love seeing people in the survivorship role. That is why our survivorship celebration is such an important part of our practice. We haven’t been able to do that for two years, but we are really looking forward to it. It’s great to see a couple of hundred people in a room. My favorite thing is running into people in Stop & Shop. It’s nice to see people outside of the hospital and doing well.”
Two Patients Weigh In
Carey’s cancer diagnosis came in March 2019, after a routine colonoscopy, which he had been putting off for five or six years. When he woke up from the procedure, he was told that he had colon cancer, that he was going to need surgery and soon after that, start chemotherapy.
“It was a total shock,” he said. “The hardest thing was telling my boys who were in their teens.”
Six weeks after surgery, Carey walked into the Davenport-Mugar Cancer Center at Cape Cod Hospital as a patient rather than a visitor. He and his wife, Christina, had been visiting the Oncology Department every Christmas season for years to bring blankets and sing Christmas Carols to the chemotherapy patients. His sister-in-law, who passed away this year, had been receiving chemotherapy there for six and a half years.
Carey received a total of 12 chemotherapy treatments. “I would go in on a Wednesday, sit down in a chair for three and half to four hours and I’d leave with a pump for the next 47 hours that would give me chemo for two days straight and then, on Friday afternoon, I would get unhooked at the hospital,” he said. “Then I would go into hibernation.”
He slept most of Saturday and Sunday and would go back to work on Monday. He could tolerate a bit of food on Monday and by Tuesday, he would be eating everything he possibly could because he felt better. This would help him to gain back five to eight pounds of weight of the 10-12 pounds he lost over the weekend.
The one activity he insisted on doing throughout his treatments was taking the stairs instead of the elevator to the second-floor Oncology Department. It was one of his ways of fighting the disease. His mantra was, “I’m not taking the elevator, I’m not taking the easy way, I’m going to fight this.”
Amy Lake was diagnosed with Stage 1B, Estrogen and Progesterone positive, HER 2 positive breast cancer in February 2020 in the midst of the COVID-19 pandemic.
A mammogram, breast ultrasound and breast MRI at the Cuda Women’s Health Center to follow up a cyst that had been noted in a previous radiology report at another center, found two tumors that were determined to be malignant.
Lake decided to be a fighter as well and took an aggressive approach to her disease.
“I told the surgeon at our meeting I wanted a double mastectomy and no reconstruction,” said Lake. “My feeling was I wanted to take the most aggressive approach so I wasn’t in the position of could of, would of, should of. I was comfortable with that, and my husband was comfortable with that.”
Her surgery was scheduled for March and her husband wasn’t able to go into the hospital with her due to the pandemic restrictions. This was followed by several months of chemotherapy, including four AC treatments and 25 radiation treatments.
“I had a lot of confidence in the care I received, not only that the oncology decisions that were made for me were the correct ones but the care I received from the nurses, physician’s assistant, and everyone associated with oncology as well as radiology oncology was amazing,” said Lake. “They were incredibly caring, incredibly professional in light of COVID.”
While Carey took to the stairs for some routine and to enhance his fighting spirit, Lake started letter writing.
“I wrote more letters than I ever did before,” she said. “People were very generous to me and so it inspired me to send notes and keep corresponding. I was diligent about taking care of my houseplants, (she had recently retired from her own gardening business).”
Lake doesn’t see herself as a survivor yet.
“I would say that I will be a survivor when I hit the five-year mark when my chances of survival definitely increase.”
Both Carey and Lake both agree that having a positive attitude is key to getting through the diagnosis and treatment.
“I think you need to find the best medical care you possibly can for you,” said Carey. “And at the same time, your state of mind and own well-being will get you through it, if you think in a positive way.”
Lake said she had a long talk with herself when she was diagnosed, and said ‘you know what, you can crumble right here, or you can face this head on and don’t let it get you.’
“I think it would be very easy to crumble, I just didn’t allow myself to.”