The value of support groups: A patient's story

In September 1993, the day after his radical prostatectomy, Stanley Klein* heard a knock on the door to his hospital room. The visitor, an activist and prostate cancer survivor himself, invited Klein to attend the first meeting of a new support group in Boston for men who were coping with the disease. Klein knew that talking with others facing similar challenges would help him, but still recovering from surgery, he demurred, at least temporarily.

Two months later, he attended a session of what would later become the Longwood Medical Area Prostate Cancer Support Group, one of the most successful organizations of its kind. Nine hospitals in four cities now foster the group, which meets monthly and, under Klein’s leadership, often attracts up to 100 people, even in cold, dreary weather. In fact, Klein estimates that he’s met with nearly 1,900 prostate cancer survivors over the years.

Experts often recommend that prostate cancer patients attend a support group. Yet Klein says that some men seem hesitant to do so. He believes that learning more about the advantages of support groups and the concerns participants share might help convince reluctant men that attending one will be worthwhile (see “Finding a local support group”). It will also help them make better-informed treatment decisions and allay their fears and concerns, he says. Here, he shares his story, explains the workings of his support group, and offers suggestions to men interested in launching their own successful support network.

The patient experience

How did you find out that you had prostate cancer?

A few days after I had had my yearly check-up, my wife said to me, “Do you know your PSA?” I had no idea what PSA was. She had been reading a magazine and that very question was on the cover. When I had my check-up, I had a normal digital rectal exam, but I did not have a PSA test. Apparently, it was not regularly done in 1993.* I went back to my primary care physician and asked for the test. Three days later, he called to say it must have been a faulty test because the score was so high. I had a PSA of 69 ng/ml, which was about 17 times higher than what was considered normal. So we repeated the test, and it was 69 again.

I had a biopsy, and it confirmed a very aggressive cancer — the Gleason was 5 + 4, for a total score of 9. The highest is 10.* My urologist and primary care physician both recommended surgery, so I had a radical prostatectomy. When the pathology report came back, it said there were positive margins. Some cancer was left behind. After talking with my urologist, I decided to have radiation. So four months after the radical prostatectomy, I had seven weeks of external beam radiation.

Did your doctors ever recommend hormone therapy?

Back in 1993, to the best of my knowledge, they weren’t doing it. It wasn’t even mentioned.

And you’ve been fine ever since?

That is correct. It’s been almost 15 years, and my PSA is still basically undetectable — less than 0.1 ng/ml.

If you were diagnosed today, would you make the same decisions regarding your treatment that you did then?

Probably not. I’d probably opt for external beam radiation without the surgery because radiation would probably kill the cancer cells in the prostate as well as any that had spread beyond it. And I certainly would take the hormones, too. But back then, hormone therapy wasn’t even mentioned. Also, having both surgery and external beam radiation guarantees and exacerbates the urinary and sexual problems, making them much harder to overcome, even with all of the modern methods.

What side effects did you experience as a result of your treatment?

The urinary incontinence started right after the surgery. And of course, all sexual function was gone; having both a radical prostatectomy and radiation eliminated any hope of getting normal erections. My wife was so worried about me during the surgery that she begged me not to have any more operations. So I use a vacuum pump instead of a penile implant. Actually, I did not want to have any more surgery, either!

The support group experience

How did you end up heading the Longwood Medical Area Prostate Cancer Support Group?

My urologist started the group at the Deaconess Hospital, which is now part of the Beth Israel Deaconess Medical Center. A few months after my surgery, he and another prostate cancer survivor asked me if I would share the role of patient coordinator. I agreed. At that time, six to eight men attended.

After a few months, I realized that there were no other support groups for prostate cancer survivors nearby, but there were many other hospitals. So I made an appointment with the chief of urology at Beth Israel Hospital, told him about the new group, and asked if he would join us. He immediately agreed, and the meetings alternated between Beth Israel and the Deaconess, which later merged. Then I went to Brigham and Women’s Hospital and Dana-Farber Cancer Institute. They both agreed to participate, too. We changed the name to the Longwood Medical Area Prostate Cancer Support Group, and we soon had 30 to 35 people showing up at each meeting. Then I helped facilitate a second support group at another hospital, and I was a guest speaker and consultant for a support group at a third hospital. But within a few years, they disbanded due to lack of interest, and they joined us.

What do you mean by lack of interest? Among patients?

I think people were interested, but there wasn’t enough of a turnout to make it worthwhile. They had daytime meetings. People who were working couldn’t attend, so they’d get only a handful of people. And it’s difficult to get speakers during the day. These groups decided that it just wasn’t worth it and called it quits. But they told everyone about the Longwood group. And when an advanced prostate cancer support group at Dana-Farber Cancer Institute started to wane, I was asked to add one to ours. We already had two subgroups: one to discuss erectile dysfunction and urinary incontinence and one to discuss prostate cancer diagnosis and treatment. The subgroup for men with advanced and metastatic cancer was our third.

Although all of the meetings are held at Beth Israel Deaconess Medical Center, nine hospitals feed into the group, which is now the only one in the Boston/Cambridge area. We get between 60 and 100 people at our monthly meetings, depending on the speaker. What’s key is that we have speakers from different places on a variety of topics.

What have you learned as coordinator of the group? What has your role been?

I learned that I had to have a competent “staff.” We had to cover the three subgroups, so I found four people, with the fourth to cover in case one of the others couldn’t attend. I can cover a subgroup, too, if necessary.

Almost from day one, we have had a women’s support group. They meet informally while the men attend their subgroup meetings from 6 to 7 p.m. Three times a year, a licensed social worker meets with the women’s group.

From 7 to 8:30 p.m., everyone gathers in the main meeting room. Nine times a year, we have a speaker. The other three times a year, people ask any questions they want, and others try to answer. Usually, we have our physician coordinator, a medical oncologist, on hand to answer questions, too.

My role is to obtain speakers, reserve conference rooms, order refreshments, obtain parking validation stickers, answer phone calls, and get our monthly flyers printed, mailed, and posted at the local hospitals.

You’ve been personally involved as a peer counselor, too, correct?

Well, I try to guide the men with the knowledge that I have gathered from listening to many other people. Over the years, I’ve gathered the greatest knowledge from talking to and interviewing almost 1,900 men, most of whom have come to the support group. The second batch of knowledge I’ve gathered is from listening to the 100 speakers we have had. I also read a lot. I have people who feed me information from various journals. I use the Internet for research, and I ask research librarians to help me find articles. I contact medical oncologists, urologists, and radiation oncologists at various hospitals and ask questions.

So I’ve got a wealth of information, and I impart that to the men, especially at those meetings when there’s no speaker. We discuss topics that other groups seem to stay away from: side effects and recurrence. Many doctors don’t like to mention those topics, but I make certain that the men at the support group understand what can happen. For example, the statistics you read for impotence and incontinence are way too low. Doctors talk about 20% of patients being impotent, but based on what I hear from the men themselves, about 90% are impotent. I believe the men when they tell me that they are impotent or incontinent, because no man wants to boast about that.

Men sometimes call when they’ve just been diagnosed and they don’t know who to see. I try to give advice — not medical advice, of course, but information on the type of doctor to see for their particular situation.

What concerns do men and their spouses or partners share during the group sessions or when you talk with them individually?

Their concerns depend on how long they’ve been dealing with the cancer. If a man has just been diagnosed, he’s utterly confused as to which treatment to have, and usually he’s very poorly informed. He’s looking for basic information.

If a man has advanced or metastatic prostate cancer, and he’s got a Gleason 8, 9, or 10 and a PSA of 30, 40, or even in the hundreds, his main concern is to live, hopefully with a decent quality of life. Nothing else is important. He wants to live long enough to see his son graduate from college, or attend his daughter’s wedding.

If a man is out of immediate danger of dying, his greatest concern is quality of life. He wants to learn how to overcome incontinence and impotence, two side effects that are very prevalent. He also wants to learn what he can do to avoid a recurrence. Should he change his diet? Should he take supplements? Should he exercise? He tends to feel frustrated because he wants to control his destiny, but he isn’t sure how to do it.

What role can families play?

They can help psychologically. Many women and adult children attend the support groups, sometimes without their mate or father because he is too embarrassed to let anyone know he’s got prostate cancer. (Of course, everyone in the room is a prostate cancer survivor!) So they come to learn and then bring the information home to him.

How do you help so many people who are dealing with different issues? How do you make meetings relevant to everyone?

At every meeting, I have copies of approximately 50 articles from journals and other sources. Sometimes there are articles that people have sent me, and sometimes I bring articles I’ve written myself. We spread them out on tables so that the men can read about any topic they want — side effects, recurrence, diet, nutrition, incontinence, erectile dysfunction. The subgroup leaders and I try to answer other questions. And then the speaker talks about his topic. Somehow, we manage to have something that helps everyone.

What can patients do to make better-informed decisions?

I’ve written an article called “Interviews with Your Prostate Cancer Doctor.” In it, I suggest questions to ask the urologist, questions to ask the radiation oncologist, questions to ask the medical oncologist. I tell them to meet with these three specialists separately, not in the same room at the same time. I tell them to get a second opinion and always ask follow-up questions. Ask why he recommends one treatment over another. If you think you may qualify for watchful waiting and he doesn’t mention it, ask why. If you don’t like the answer, get another opinion.

What are the advantages of attending a support group?

A good support group is invaluable. I’ve heard this from hundreds of people who’ve attended our group, and I believe it in my heart. Often the people who attend have read a number of books about prostate cancer and done some research on their own. That gives them the basics, but the information is often biased toward a particular treatment. And physicians simply don’t have time to cover everything. So they find that the support group is really the best source of information, and there’s plenty of time to answer questions. Not only can we answer questions, but we answer questions people never thought to ask!

Support groups also offer psychological support to both the man and his family. When I point out men who are 10-year cancer survivors, or 12-year cancer survivors, or 14-year survivors, newly diagnosed patients have hope. You’d be amazed to see how their countenance changes. They relax because they know that they aren’t alone. There’s great camaraderie in every subgroup, and everyone seems to be doing fine. When someone who’s been recently diagnosed sees that, he realizes, “Gee, maybe I won’t die next week.”

We alert the men to possible side effects or problems that they may not be aware of and possible solutions. We encourage them to see their doctor about these things, especially in regards to overcoming side effects. Also, we correct misinformation. Sometimes I can’t believe what a newly diagnosed person says! I’m not blaming him; he’s just heard something from a friend, who heard it from a friend, who heard it from a friend.

The subgroups offer specialized information. If a man wants to learn about overcoming erectile dysfunction after cancer treatment, he can come to our subgroup on impotence and incontinence. We show men the devices that are available to help them have an erection — the vacuum system, penile implants, and injections. And we have people speak on those topics.

I have two sayings that sum up what a support group is. The first one is “Sharing is caring.” The second one is “Learn to cope through knowledge and hope.” A good support group does both.

How does your group differ from others? What makes it so popular?

I’m blessed to be in an area where there are so many hospitals and specialists. That makes it relatively easy to get speakers on a wide range of topics. Patients tell their doctors about the support group, and then the doctors want to speak. Doctors who have spoken in the past want to come back. The group has built up a good reputation.

I also have a reputation for questioning speakers if I think they’ve left out key facts. I will refer to a specific article in a particular journal, for example. I do it very politely, of course, but people realize that they’re getting a balanced, accurate picture at our meetings. When they leave, I don’t want them to have any misconceptions.

We have male and female licensed clinical social workers at our meetings, and we’re the only group in New England that offers sessions for women. We also have a speaker’s bureau for women, Women Against Prostate Cancer. They are willing to talk to women’s organizations or mixed groups that want to learn about prostate cancer.

What are women most concerned about?

Their main concern is obviously their mate. They want him to live, and they want him to be happy and productive. The men feel terrible that they’re impotent. They feel that their manhood has been taken away from them. About 30% of men have some degree of incontinence, and they are embarrassed about that. Some of them want to go into a shell. They don’t want to go out to a movie, or a party, or a wedding. The women talk about how to encourage their husband or partner to socialize, how to tell him that the world hasn’t come to an end, that he’s still a man, that he’s still loved, and that he can get help. They talk about how to have a sexually satisfying relationship without having intercourse. And they talk about how to prevent their men from becoming too despondent. Believe it or not, that’s one of the biggest problems!

Of course, their concerns also relate to where they’re at in the course of the disease. If a woman’s husband or partner has metastatic cancer, her main concern is how to keep him alive. But in general, unlike most men, most women are interested in the psychological aspects of the disease. Men are interested in the how-to’s: How can I be treated? How can I overcome my side effects? How can I prevent a recurrence? How can I have an erection?

How do you keep people engaged and coming back month after month?

Hundreds and hundreds of people have told me they’ve learned more from the support group than from all the books they’ve read and all their conversations with their doctors. They keep coming back until their condition has stabilized. At that point, they often drop out. I hope I never see them again. But a few years later, some come back, not because I’m a nice, friendly guy, but because they’ve had a recurrence and they feel they will benefit.

Other people attend when we are going to cover certain topics — urinary incontinence, for example — or have a speaker with expertise in a particular area, such as a medical oncologist or someone who specializes in sexuality. Some people just keep coming because they always want to learn and support new members.

Next, if someone asks a question and you’re in doubt about the answer, say so. Tell them you’ll look it up and get back to them. Once your veracity is challenged, you are in trouble.

You also have to create a friendly atmosphere. In our case, the Beth Israel Deaconess Medical Center helps do that by giving people free parking for our meetings. They also supply refreshments and help with our mailings.

Do you have any advice for others who may be thinking about establishing a support group in their area?

Obtain speakers who are as objective as can be. This is very important. Also, I try to avoid inviting primary care physicians to speak, not because they aren’t nice people, but because they usually don’t have the specialized knowledge the men are looking for. Speakers should also focus on what will help people now. Sometimes, they’ll want to talk about their work in mice and how it might lead to a new drug one day. Their work might help all of the mice in the world, but the people in the audience want help today.

You send out flyers instead of using e-mail?

Yes. I learned that the hard way. Unless people tell you that they’ve changed their e-mail address, you lose contact with them forever. But with the U.S. Postal Service, I’m notified of address changes for six months.

Our mailing list includes about 340 names. To keep the cost of postage down, I cull the list every three or four months. If people haven’t shown up for six months or so, I send them a very polite letter telling them that they are going to be removed from the mailing list, but that they are always welcome to attend meetings or call me. If they start coming back to the group regularly, we put them back on the list.

Does the group have a Web site?

Yes. It’s part of the Web site of the Boston Prostate Cancer Walk, which is www.bostonpcwalk.org. If you click the “PC Support Group” tab, you can get the dates for the meetings and a list of speakers and topics. My article listing questions to ask your doctor is posted under “Resources & Links.”

Any final comments?

I know people have great concerns. I just try to give them hope, encouragement, and the technical information they need to make the decisions that are right for them.