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Conversations With Prostate Cancer Experts


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Patients Speak: Facing Mortality

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Mr. Spencer Le Gate spoke to Prostatepedia about his prostate cancer journey and his role in his local support group.

How did you find out that you had prostate cancer?

Mr. Spencer Le Gate: My family doctor put me on a small dose of a statin drug for cholesterol back in 2000. He had the good sense to give me a blood test every three or four months to check all my vital organs for any problems. At the end of 2007, he noticed that my PSA had started to rise. He asked if I knew anything about prostate cancer. Just a month prior, a childhood best friend had died from prostate cancer, so that was my introduction.

We watched my PSA for about a year, and then, in early 2009, I had a biopsy. We determined that mine was not the most aggressive form, so given all of the options, brachytherapy seemed like a good choice. I had the procedure in May of 2009. After that, there was a small spike in my PSA, which we all hoped would diminish as often happens after treatment. Almost two years later, my PSA had gone from around 1 up to almost 11, and that meant I had a recurrence of prostate cancer. Around early 2013, I had a biopsy that confirmed that I was recurrent nonmetastatic. I went on Lupron (leuprolide), which brought my PSA count down very nicely, so I asked if I could do it intermittently.

You asked for that rather than the doctor suggesting it to you?

Mr. Le Gate: Yes. I wanted the vacation because, of course, I experienced side effects.

What kinds of side effects did you experience on Lupron (leuprolide)? How did you manage them?

Mr. Le Gate: The side effects for me were, of course, the most common: hot flashes. At one point, I did have a Depo-Provera (medroxyprogesterone) shot, which diminished the hot flashes pretty well. The others were loss of libido and muscle weakness. I have lost muscle mass throughout my body, but particularly, in my legs. My muscles atrophied.

Were any of these side effects severe?

Mr. Le Gate: I would say, for the first round of my treatment, not so much. But since I went back on Lupron (leuprolide) in 2013, they are more pronounced. When I took the vacation, my PSA went up alarmingly. In other words, it was worse than that scary doubling threshold in three months.

Did they put you back on the Lupron (leuprolide) as soon as that started to happen?

Mr. Le Gate: I’ve been on the Lupron (leuprolide) for almost two years. Now, when I get up in the morning, my legs are painful and I’m a little rickety. Despite the fact that I’ll be 75 in a few months, my legs have been good to me, and I’ve led a very active lifestyle. The pain I feel now in the legs is not just the inevitably of age, but the Lupron (leuprolide).

Does exercise help with the side effects?

Mr. Le Gate: Exercise does. I have backslid some, but until about a year ago, I had a trainer. I went several times a week. I took a 12-week course of training sponsored by a local cancer organization during the intermittent period and it was very beneficial. Should I get the motivation to get back to exercise, it would help me a lot. I am still active and hands-on in my profession. I’m a general contractor. It’s a pretty active job, and I’m up and down all the time. But I learned very quickly once I started aerobic exercise, that it’s more effective than getting up every morning and putting on my tool belt.

Is there anything else that you do to manage the side effects?

Mr. Le Gate: Of course, the change in your mental state. When I’m not working, I’m a person who spends a lot of time reading, and before I decided to become a contractor, I had a pretty good education. I have some sense of my cognition, and I think that your overall mental state has an effect on how well you feel.

Did that go away when you went on the intermittent period?

Mr. Le Gate: It did. Most everything went away. I only had a year. During the intermittent period, I took that phenomenal 12-week course. We met twice a week for two hours of rigorous training, weightlifting—everything.

It was really eye opening for me.

Are you saying the exercise and training impacted the cognitive side effects you were feeling as well?

Mr. Le Gate: Oh, yeah. I think it did. I had some sense of that even before I had cancer. If you’re physically active, there is a positive mental effect to that. Again, some of these things are just so blurred. How much of it is due to aging, and how much is just the burden of a disease that— at this point—cannot be cured?

Stress, you mean?

Mr. Le Gate: Yes, stress. Also, I always have been a bit anxious. Now I think I have to be more careful about managing my anxieties. I mean, I think there’s so much of this disease that can be managed. You can manage it. I don’t have a metastasis. So I’m not in a worse position. I attend a monthly prostate cancer support group here in Sacramento, California. It’s one of the best things I’ve done. I’ve gotten involved in it, and I’ve actually had the good fortune to be asked to lead groups, come up with ideas, and answer folk’s questions. I’ve had a very healthy life and getting a major disease like this has been instructive. I started reading and writing more because of it, even just letters to the paper, letters to friends.

About your disease?

Mr. Le Gate: Not necessarily, no. I’m a political person on the progressive side. I have very strong opinions that I don’t mind sharing. Of course, I’m obliged to do more reading and be more thoughtful about my politics. I think having prostate cancer at this stage of my life has pushed me into this, and I take a great deal of satisfaction out of doing it now.

What advice would you have for a man diagnosed with this disease?

Mr. Le Gate: Find out all you can. Get involved in a group. Neither my oncologist nor urologist ever mentioned support groups. I discovered this just by chance when I was well into the recurrent part of my disease. Had I known that there was such a group when I was first diagnosed, I would’ve been better prepared to make decisions. Your doctor is a human being who can make good and bad choices. You need to be proactive.

I was fairly proactive, but when I first was diagnosed with the disease, had I known there was a support group, I would’ve learned about a number of other options. For example, there’s a group in San Francisco called The Second Opinion. Once you get a diagnosis— for no charge at all—you can meet with a group of doctors and discuss your options. I never knew there was such a thing before. Everybody who’s ever discussed the options thoroughly and looked at all sides of the coin can set their mind at ease before they make any decisions.

Are there other ways that the prostate cancer diagnosis might have had a positive impact on you?

Mr. Le Gate: After a lifetime without serious health problems, it’s not a bad thing to realize that you’re mortal. I think it’s made me more responsible about whatever time is left of me. I want to use my time the best way I can and to learn something, even if it’s just to learn something about the disease. There’s so much to learn about healthcare and the science of treating with medicine, but most people, if they’re healthy, simply ignore this. To be more informed in this way, and to have the disease yourself— if you’re smart and if you have a sense of humanity—you’re going to think about other people who have the disease and be more sympathetic to others.

The diagnosis has made you more—

Mr. Le Gate: Empathetic. I want to reach out to the people I see at my support groups because I know something about the disease, especially for those who have just recently been diagnosed. Because I know a bit more, because I’m old hat, if I’m able to do the slightest thing to relieve their anxieties and fears, that’s a good thing. I’m hopeful that I can put together some sessions at my prostate cancer support group where participants can discuss their mental state. At the last meeting, when I was asked to be the facilitator, I came up with the idea to put together a questionnaire, which would be voluntary and anonymous. I want to see what people have done to mitigate, find some distractions, and to discuss anxieties.

I’ve noticed in our group that we’ve discussed the mechanics more than the emotional. You have to be careful that you don’t make this into a weepy, touchy-feely thing. I’m trying to navigate it so that we can discuss our emotional things in a sensible way that’s helpful, that doesn’t make people more fearful.

You want it to be a positive experience?

Mr. Le Gate: Exactly. I was pleasantly surprised when I raised the point, which was so different than the things we usually talk about. We usually talk about where someone is in their treatment. The response was relatively positive from people.

It’s an Us TOO through the University of California Davis Medical Center and Dignity Health. We alternate between those two venues. I’ve been with this group about three years. I’m not a person who joins things, but it’s become an important part of my life. I have the support of my peer navigator, Bill Doss, and our Director, Beverly Nicholson. They are just fabulous people. I’ve really gotten a lot out of it, and I think others have too. It helps to be almost 75 years old and still have your wits about you.

To realize your experiences in life could be useful for a lot of other people. That’s what’s working for me.

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Starting An UsToo Support Group

PatrickFisher

Mr. Patrick Fisher is the co-founder and Chapter Leader of the Us TOO Rochester, New York support group.

Prostatepedia spoke with him recently about starting local prostate cancer support groups. (Not a Prostatepedia member? Join us!)

How did you come to lead a prostate cancer support group?

Mr. Patrick Fisher: I happened upon Us TOO International through my own experience as a prostate cancer survivor. When I was diagnosed in 2010 I did not want to take part in a support group of any kind. I thought it would just be a room full of men not happy with their outcomes and did not want to be influenced by negativity about their choices. At that time, I guess I just wasn’t ready to hear other people’s opinions. I wanted to do my own research, make up my own mind, and move forward.

As naive as that might have been, it got me through. I decided on surgery. I had already lost five brothers and my father to different types of cancer. Then two of my surviving three sisters developed breast cancer. I felt that if surgery was an option towards a cure of my cancer, then I should pursue it.

So I did.

However, in the weeks and months following surgery I developed severe urinary incontinence. In 2012 I started to look for help. That was when I realized the error of being close-minded about support groups. In my search, I learned there weren’t any groups here in Rochester that specifically focused on patient education about prostate cancer, let alone side effects from treatment.

Not even through the local hospital?

Patrick: The concern I realized is this: there are so many treatment options men need to know about in order to make an informed decision that providers simply do not have the time to do a thorough job of educating their patients. Too often, a surgeon may inform men about surgery and a radiation therapist may inform them about radiation, but few are fully informed about other options such as cryotherapy, high intensity focal ultrasound, 3T-multiparametric MRI, proton beam radiation, Cyberknife, etc.

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Some providers refer men to Gilda’s Club, which has a national presence. The Rochester Gilda’s Club makes an ongoing effort to reach out to men with prostate cancer. However, they’re not funded specifically for those impacted by prostate cancer and subject matter experts do not typically facilitate the meetings they host. Without a facilitator present, there is no one available to correct any misinformation. This could result in some attendees leaving with wrong ideas about a particular diagnostic procedure or treatment option. In any case, at least Gilda’s Club encourages men to gather for sharing their experiences and being a support to one another.

There was another group at the time called Man-to-Man, sponsored by the American Cancer Society. In 2012, the American Cancer Society decided to no longer fund men’s support groups.

I had severe urinary incontinence after my surgery in 2010. While my surgeon was an exception to the rule and provided me with extensive information about the risks versus benefits of other treatment options and provided urinary incontinence treatment, traveling the path to full recuperation was still a long road for me.

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By 2012, I had had multiple therapies for incontinence, but grew increasingly frustrated with the idea of having to use pads.

So, I started to seek additional support systems and did some research on the Internet. That was when I happened upon an Us TOO chapter located in Batavia, NY, not far from Rochester, only to discover it was no longer functioning. Then I discovered there were Us TOO chapters in Buffalo and New York City, but those were a hundred or more miles away. There was no Us TOO chapter in Rochester.

I then contacted the Us TOO headquarters and talked with Terri Likowski. Terri shared that Us TOO also hoped to form a Rochester chapter.

Did Us TOO provide training or guidance on setting up a group?

Patrick: Us TOO is a global nonprofit with more than two hundred chapters in the United States and other countries.

They provide access to support and education for those affected by prostate cancer. They have done a great job helping survivors and seeking sponsors (typically pharmaceutical companies) to fund publications about prostate cancer screening, imaging, diagnosis, treatment options and emerging research.

Initially, I just followed my instincts.

When I was diagnosed with severe urinary incontinence, I retired from the University of Rochester Medical Center where I was a community educator for HIV vaccine trials sponsored by the National Institutes of Health.

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The position developed my skill for establishing community engagement. It also gave me first hand experience networking with local nonprofit organizations about other health issues.

In my career as a community advocate, I became a witness to the benefit of consumer education for patients.

How did the group start?

Patrick: There was another Rochester survivor brought to my attention by Terri Likowski of Us TOO. I contacted him. The two of us seemed to have identical feelings about the need in the community. We concluded that all we could do was make an effort to see how the community responds to the idea.

I developed an ad and wrote a short article about the need for a local prostate cancer patient education effort. The ad identified a date and a location for our first meeting and invited like-minded people to attend.

Terri Likowski provided me with a contact person at a well-known pharmaceutical company that manufactures one of the medications used by prostate cancer survivors.

With two short phone calls, the drug company and a local urology office agreed to help pay expenses for the first call-to-action meeting. We ran the ad in a local Penny Saver. I believe the cost was $35.

One of our goals was to attract local urologists, oncologists and other survivors to attend. So, we decided not to have the meeting at a local church basement, but rather to find an appealing venue. I contacted a local golf course and country club to reserve a space. I arranged with their caterer for an evening meeting with a coffee bar, wine, and a vegetable and fruit tray.

The total cost was under $700. The pharmaceutical company covered all expenses, including the 35 invitations to urologists and oncologists.

My expectations were low. I thought we might get eight to ten people.

But much to our surprise, the room was packed. That first meeting made it clear: peer support for survivors and prostate cancer patient education were efforts that our community would indeed support.

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More astonishingly, there were a few urologists in the room from different hospitals and urology centers that also wanted to support us and saw the need for such a group. That immediately gave us contacts within these various medical organizations.

We decided early-on those chapter meetings had to be more than a bitch session where men could complain. The focus had to be on patient education that increased awareness about treatment options and side effects. We also decided that our meetings had to be facilitated by urologists or subject matter experts.

And, so, Us TOO Rochester was formed at that first meeting in November 2012. We continue to conduct monthly meetings. In four years, the chapter grew from just an idea shared by two survivors to more than 350 members.

Meetings gave rise to more outreach, and more outreach resulted in more members. More members then gave rise to more local events. Members now help staff information tables at shopping malls and organize annual fundraisers. Fundraisers include car-shows, motorcycle rides, and the annual SEA Blue Ribbon Walk for Prostate Cancer similar to the walk conducted annually by Us TOO in Chicago.

Unfortunately, the other co-founder for Us TOO Rochester had to leave the chapter due to work demands. He served for only three meetings and I have been the chapter leader ever since.

How many times a month does your group meet?

Patrick: We have been meeting on the second Thursday evening of each month since 2012.

Most of our meetings have been at the Jewish Community Center for Greater Rochester. Their Senior Resource Program allows our Chapter to meet in their conference room for free. I schedule a subject matter expert to facilitate each meeting. The topic changes from month to month. Everyone leaves feeling more informed about that month’s topic than they did when they walked in.

How do you select the topic?

Patrick: At first, I suggested topics and found local providers willing to conduct presentations. In recent months I formed a Working Group of survivors who help select topics. The Working Group now also helps organize local events.

What is your group’s current relationship with Us TOO?

Patrick: The Us TOO home office provides support to chapter leaders with monthly leader calls and a leader resource page on their website. They also provide forms and personnel to help ensure that chapter leaders have the guidance they need and that local printed materials correctly represent the Us TOO logo and brand.

When we conduct a fundraising event, checks are made payable and sent to Us TOO so donors can benefit from the 501(C) (3) charitable deduction.

A percentage of funds raised from our events support the Us TOO home office to help defray the cost of the free materials and resources provided to chapters. This agreement also makes it possible for our chapter to raise funds without the hassle of maintaining a private checking account.

For example, every year, Us TOO hosts the SEA Blue Prostate Cancer Walk & Run in Chicago. I followed their model and created a SEA Blue Ribbon Walk for Prostate Cancer in Rochester. We’re hosting our third walk this summer. At the first one, we had approximately 80 participants, a handful of sponsors, and raised about $10,000. Last year we had more than 400 participants, many more sponsors, and raised about $25,000. From the proceeds, we made a donation to the prostate cancer patient survivorship fund at the University of Rochester Wilmot Cancer Institute, a local cancer treatment facility and prostate cancer research center.

Now we’re looking for benevolent sponsors for next year and hope to grow even more.

Do you have any advice for men starting a local support group?

Patrick: Don’t be afraid. Don’t be timid. Talk it up with peers. I bet if you pick six of your male friends, you’d find that at least one of them is also dealing with prostate cancer and may be willing to help.

When I started this chapter, I went to the breast cancer coalition here in Rochester, got an appointment with the Executive Director and asked how they got started. She was very eager to share ideas. I executed some of her suggestions. I also invited her to speak at our first meeting about the benefit of patient support groups for people with cancer.

My suggestion for those interested in starting a local chapter is to first contact the folks at Us TOO. Then, identify a venue, which could simply be a church basement or a local restaurant. It doesn’t have to be anything fancy.

Try contacting a local urologist to see if he or she will facilitate a discussion group at the first meeting. Consider placing a short, well-phrased line ad into your local Penny Saver.

Us TOO Rochester has accumulated over 45 urologists, oncologists and pelvic floor therapists who have facilitated our meetings, all at no cost. At each meeting, I provide a sign-up sheet requesting phone numbers and email addresses for the purpose of future communications related to prostate cancer. I create a simple flyer for each month’s meeting and then distribute it to all of the providers and people who have attended meetings.

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Over time, our chapter has obtained the trust of these medical providers who now promote our meetings within their urology and oncology offices and often refer their patients to our chapter for additional support and information about treatment options.

But, reaching out to Us TOO is the way to get started. Have a conversation with Terri Likowski. Us TOO makes it easy. It doesn’t make any sense to reinvent the wheel. You might be starting a new group in your area, but this has been done time and time again in locations across the country and around the world. All you have to do is follow their model.

Have you started any other programs with Us TOO?

Patrick: Yes. Us TOO has a program called Community Conversations. They select four cities with Us TOO chapters to conduct a lengthy community conversation about topics concerning prostate cancer. Us TOO Rochester was selected as a location for a Community Conversation on Saturday, June 17, 2017. The University of Rochester Medical Center Urology Group and Wilmot Cancer Institute will host the event. Our venue is a local country club in Rochester.

We’re looking forward to this event: June is National Men’s Health Month.

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Is there anything else you’d like to add?

Patrick: While I was diagnosed with severe urinary incontinence following my surgery, by being faithful to pelvic floor therapies and adhering to selfhelp recommendations, today I am no longer wearing any pads and have regained bladder control. The process of retraining my bladder (and my brain!) required 18 months and a lot of patience.

One day I stayed dry all day and have been pad-free ever since. I am proof that it is possible, and that over time even challenging recuperations can lead to success.

I have no regrets about choosing surgery.

I have learned there are many men who agree and that many others have no regret about choosing radiation, proton beam radiation, or other treatments like hormone therapies.