Burton helps create support organizations for cancer patients after own battle

Date: 2/12/2015

LONGMEADOW – Jay Burton, a primary care physician with the Springfield Medical Association, was diagnosed with acute myeloid leukemia in May 2010 and went into remission in July 2010. Within the past year, Burton has led and helped established two support organizations to help cancer survivors, their families, and caregivers.

Burton, a town resident, said he went into remission “after a first round of chemotherapy that almost killed [him]” and later received a stem cell transplant in October 2010. He was homebound for about a year, doing his own primary care himself. 

“I realized while I was doing my own primary care that there are too many other people who are in very similar circumstances with different types of cancers that don’t have that ability,” he added. “They don’t know who to ask, what to ask, when to ask, why to ask, and I said, ‘I’m in a pretty unique position. I’m a primary care doctor who had cancer and I said the next phase of my life is I’ve got to help people who are cancer survivors do things that I could do.’”

When Burton went back to work in February 2012, he pitched the idea to the Springfield Medical Association. In March 2014, the Primary Care Cancer Survivorship Program of Western New England (PCCSP) in March 2014, which helps patients who are cancer survivors obtain more directed care for their medical issues, was established.

“My definition of a cancer survivor is a person when they’re diagnosed with cancer because that’s when you go into survival mode,” he added. “What we’ve done is we’ve promoted this as part of our practice, which is unique. It is the only private cancer survivorship program in the country, meaning it’s the only one in a private medical practice.”

A nonprofit component was also developed called Survivor Journeys, which is a psychosocial support organization, that was also founded less than a year ago, Burton said.

“Within that we have a number of cancer survivor support groups for blood cancer survivors, breast cancer survivors, gynecologic oncology survivors, young adult cancer survivors, [and] caregivers,” he added. “We have a bereavement group. We also [started] a cancer survivor group, [last] week, which is for all other cancer survivors that we don’t have other groups for yet.”

Two weeks ago, Survivor Journeys also created another group called “Family Connections,” which was organized to help families affected by cancer, Burton said. 

“We have families come, we have a little refreshment period, and then we break up into groups,” he added. “There are parents who have children that have cancer, spouses that have cancer, or they have cancer. It’s just an event that's held monthly that we bring families together in one place.”

The idea behind all of these support groups is to reach out to cancer survivors in a local setting outside of cancer centers and hospital, Burton said.

“I can tell you from personal experience, if you have cancer the last place you want to go for a support group for anything other than treatment is back to the hospital,” he added.

The groups are held at senior centers, churches, and libraries, Burton said. “We have our support groups, which are on range from Enfield to the south and South Hadley in north and I’d like to get it even further north.” 

“There can be anywhere from two to 22 [people] at [survivor groups],” he noted. “Our largest attended groups are blood cancer groups, which are actually co-sponsored by the Leukemia & Lymphoma Society. We routinely get at least 20 people at each of those groups.”

All groups are free and open to the public, Burton noted. A behavioral specialist such as a nurse, social worker, or psychologist, and a cancer survivor facilitates the groups.

Burton said a lot of primary care doctors often don’t feel comfortable taking care of cancer survivors.

“They feel maybe that they don’t have the training,” he added. “They feel maybe that they’re much work or in this time of altered alternative payments providing care, they feel that it costs too much money to take care of cancer survivors. All of that is in my mind untrue.

“It’s just as difficult, just as possible to take care of complicated congested heart failure patients or kidney failure patients or diabetic patients,” he continued. “You just need to be able to have the passion for it.”

Burton said in less than a year both organizations have engaged a large number of people in the Pioneer Valley area.

“It’s all about letting people know that these services are now available that really were not available before,” he added.
 
This year, many cancer centers and hospitals have to come up with a survivorship plan for when cancer treatments finish their treatments, Burton said.

“What that means is the plan has to detail the type of cancer the patient has, the type of treatment, the complications of the cancer [or] treatment, and what to look for in the future and not the next six months, but the next 10 or 20 years,” he added.

Burton said this type of plan has been done by the pediatric community in the past, but has not really been done in the adult cancer community.

“That’s a huge improvement for cancer care for patients,” he added. “For an example, if I see a patient who had Hodgkin’s [lymphoma] disease 20 years ago, there’s no real record of what they went through. They don’t have any records, maybe their doctor left practice. You’re not required to keep medical records after seven years and these patients don’t know how they were treated.”

For more information about PCCSP visit www.springfieldmed.com and click on the link in the upper right hand corner. You can also find additional information about Survivor Journeys at www.survivorjourneys.org.