By Mike Richman
VA Research Communications
Shortly after being diagnosed with prostate cancer in 2017, Marine Veteran Joe Gallo became involved with AnCan, a peer support health care network. The group coordinates virtual meetings for patients with such diseases as prostate cancer, breast cancer, brain cancer, or multiple sclerosis.
Gallo came to realize that AnCan offered no breakout support group for prostate cancer patients like himself on active surveillance (see main story). He thus collaborated with two other AnCan prostate cancer patients on active surveillance—Howard Wolinsky and Mark Lichty—to create a virtual support group dedicated to active surveillance. They shared the idea with AnCan founder Rick Davis, and the group became a reality.
“We all thought prostate cancer patients need help figuring out which way to go,” Gallo says. “We started having monthly meetings and invited everybody from newbies to people who had been on active surveillance for 20 years.”
‘I could pick and choose what I wanted to do’
Joe Gallo at the Marine Corps Base in Quantico, Virginia, in 1969, shortly before leaving for Da Nang in South Vietnam.
Joe Gallo, a Marine Veteran, gave a five-minute presentation at the conference on active surveillance from a patient’s perspective. In 2017, he was diagnosed with prostate cancer at St. Mary Medical Center in Langhorne, Pennsylvania. His PSA was 6.2, and his Gleason was six. While serving in Da Nang in South Vietnam during the Vietnam War, Gallo was exposed to Agent Orange, the chemical defoliant used at the time by the U.S. military. VA recognizes certain cancers and other health problems, including prostate cancer, as presumptive diseases linked to exposure to Agent Orange and other herbicides.
Without applying any pressure, Gallo’s urologist offered him options to choose from after his diagnosis, including active surveillance, surgery, and radiation.
“I could pick and choose what I wanted to do, and I chose active surveillance,” Gallo says. “He didn’t push. There are doctors who do that for different reasons or motivations, including financial. Urologists are surgeons, so that’s their natural inclination. He first said, `I want you to go downstairs and meet with the radiology people, too, so you can get a perspective there.’ I asked him, `How do you get paid? I wanted to see where he was coming from. He said, `Well, I’m the head of the department. I get paid a salary. My job is to take care of you, not to just do surgery.’ I proceeded from there.”
`You’d better take a look at it’
Today, Gallo and Wolinsky run the breakout group. They moderate virtual peer-to-peer meetings every Wednesday evening that are sometimes attended by hundreds of men on active surveillance, including many from other countries. The participants ask questions and offer support to other men with low-risk prostate cancer. Plus, a urologist, oncologist, or another doctor speaks to the group once a month and answers questions afterward. The goal is to educate the patients, who at the same time are doing their homework by learning as much as they can about the disease.
Gallo and Wolinsky avoid offering medical advice. But they stress some basic points. One is that a PSA score of at least 4.0, typically the mark that tells someone he should see a urologist for a checkup, does not mean a patient has prostate cancer. The men who attend the meetings usually have a PSA score from 4.0 to 6.0, Gallo says.
“A PSA above 4.0 says something might be wrong, and you’d better take a look at it,” he says. “When the light on your dashboard goes on, you don’t say now I won’t worry about it. You take it to a mechanic to look at it. Get somebody else to look at it. Find out what’s going on and get some answers. Then you can figure out which way you’re going to go.”
Second opinion is key
Often in medicine, getting a second opinion is a way for a patient to make the most informed health care decision. Gallo says the men in the AnCan active surveillance support group are urged to do the same. As for the reasons they choose active surveillance over a treatment like surgery or radiation, “We’ve seen the whole gamut,” Gallo notes.
“It depends on the individual doctor,” he says. “Some of them are really good. They’re like, `Active surveillance is the best way to go if you have a low or very low-risk form of prostate cancer.’ There are others depending on their skill and in some cases probably from financial motives who say, `No, I think you ought to go into the procedure.’
“When somebody in the support group says, `My doctor says this,’ we say, `Based on what you’re telling us, you’re not under immediate urgency. We think you ought to get a second opinion, or you ought to talk to a radiologist as well as a surgeon.’ A lot of guys have responded to us saying, `Thank you because my doctor was trying to get me to go into surgery right away. Based on what you guys told me, I went for another opinion, and I don’t think I’m going to jump into it.’”
Do the men on active surveillance find it uncomfortable living with prostate cancer?
“We refer to that as anxious surveillance, either on the part of the patient or sometimes a family member,” Gallo says. “Our sessions are open to spouses to come in, too. We’ve seen it when the wife says, `It’s cancerous. You’ve got to remove the prostate right away.’ We try to encourage them to take a deep breath and get multiple inputs. If you feel like you really, really have to remove it, okay, here are some of the criteria you should use in selecting between surgery and radiation and either way, where you’re going to find a good doctor. Prostate cancer is slow growing, depending on where it’s at. That you have it tells you the procedure that’s needed and how fast you need to move. We try to say, `Don’t panic, and if your biopsy says you’re a Gleason six, low volume, then you’ve got time to figure it out. You may stay that way the rest of your life.’”
In addition to the breakout group, Gallo is on the board of Active Surveillance Patients International (ASPI), a non-profit organization that assists men with low-grade prostate cancer in making sound health care decisions. Lichty is chairman of ASPI. Wolinsky, a former medical writer for the Chicago Sun-Times, also writes a column on prostate cancer for MedpageToday.com and publishes the prostate cancer newsletter The Active Surveillor.
To sign up for the AnCan active surveillance support group, click here or email Gallo at firstname.lastname@example.org.