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Navigating Prostate Cancer: Diagnosis Through Survivorship

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Published on September 30, 2019

Patient Power’s Andrea Hutton is joined by patient advocate and founder of AnCan.org Rick Davis to discuss navigating life with prostate cancer from diagnosis, to treatment and survivorship. Rick gives tips on strengthening your healthcare team and self-advocating when making treatment decisions. Rick also discusses the benefit of support groups and ways AnCan is helping patients become more comfortable talking about their condition. Watch now to learn about life with prostate cancer.

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Thanks so much for sharing this event online. I just started my third year of fighting advanced prostate cancer and the content of this event is really encouraging.

— Ken, on Facebook

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Transcript |

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrea Hutton:

Hello, I’m Andrea Hutton and I am the Content Manager and Community Manager for prostate and breast cancer for Patient Power. And I’m very excited to be here today with Rick Davis, who is the founder of AnCan, Answer Cancer Foundation, and is a very well known and highly respected prostate cancer advocate and prostate cancer survivor. So, Rick, thank you for joining us today.

Rick Davis:                 

My pleasure. 

Andrea Hutton:           

So, I kinda wanna start with your story, whether you even like the term survivor. How do you define yourself? I’m a breast cancer patient. I’ve been living with metastatic breast cancer since 2009. So, I’m not comfortable with the word survivor. How are you feeling about it? 

Rick Davis:                 

The bottom line for me personally, is that I think it’s very important for a person with cancer to use the language that makes them feel best. There are no right and wrongs and anybody who has an opinion should only be talking about it with respect to them self. And I personally am very careful to do that, and we try to do that on our website because we recognize that there are people who are truly motivated by the war similes and the survivor similes and it helps them. And there are other people who are very—some are offended, some just don’t feel they’re appropriate.

So, there’s no right and wrong. You have to use language that makes you feel most comfortable. And more important, people around you who are talking to you have to respect that the language you use is the right language for yourself. 

Andrea Hutton:           

So, for somebody listening to this who has come here because they’ve just been diagnosed with advanced prostate cancer, what is the first thing that you want them to know and the second thing that you want them to do after? 

Rick Davis:                 

So, I’m gonna change your language a little bit if you’ll let me and I’m gonna change it to high-risk prostate cancer. Because we have to—there are two real distinct differences here. There are people like myself who were diagnosed with high-risk prostate cancer and there are people who are diagnosed with advanced cancer who are de novo metastatic. And the treatment is a little different and the outcomes may be a little different. So, talking about men who are de novo metastatic, what I would be telling them to do—advising them, excuse me, or the way I would be navigating them would be to make sure immediately that they had a genitourinary medical oncologist as their quarterback.

That’s the most important thing that any man who is diagnosed de novo metastatic. They don’t want a urologist, they don’t want a radiologist, even if they specialize in prostate cancer, and they don’t want a community level medical oncologist or a general medical oncologist who doesn’t understand prostate cancer. Because this field is moving so quickly that the way we treat somebody de novo metastatic today is very different to how we treated them five years ago. And certainly, exceptionally different from how we treated them 10 years ago.

So, if you’re de novo metastatic, you must place a very knowledgeable genitourinary medical oncologist on your medical team as soon as you possibly can. If you’re high-risk, which was my situation, then you don’t necessarily need a medical oncologist on your team, although some time prior to treatment you’ll probably want to consult with one. What you have to do is really decide how likely it is that you’re going to need second-line treatment after your first-line treatment. Because, what you don’t want to do is put yourself through a whole bunch of treatment and then find you’ve got to do another bunch of treatment because the first bunch of treatment didn’t work, and there are ways to do that.

Now there are some men who may opt for a series of treatments. And that series of treatments, by the way, underlying breast cancer usually does not include chemotherapy if you are high-risk. If you’re de novo metastatic it may do but if you’re high-risk it usually doesn’t, and the clinical trials suggest there’s no benefit to chemotherapy unless metastasis is observed at the time that you’re diagnosed. But you can look on the decisions and you can use nomograms, and for those who don’t understand the term nomogram, it’s essentially a database. Usually from one institution that records all the experience of that institution using certain treatments for prostate cancer.

And then you find the group of people whose disease demographics best match your disease demographics and it gives you an idea of what the outcomes would be from that treatment. So, it doesn’t tell you what will happen it just says, “Look, here are X number of men”. You may not even know the number but it’s a significant number of men who have disease just like you and who decided to do surgery or decided to do radiation, and this was the outcome when they did it. Which is saying, “This is what happened in general”. Now you make the decision whether you want to do the surgery or not.

And in someone like myself—for someone like myself, the risk of surgery being successful, or the chance of surgery being successful, was about 30 percent. And so, I knew going in that I was gonna have to do more than just surgery. So, then the decision was, “Well, what if I left the surgery alone and I just did radiation and I just did systemic therapy?” Which usually first line for prostate cancer is a hormone therapy treatment. Usually a little more severe than something like Tamoxifen. So, it’s more than a treatment that protects or buffers the androgen receptor. It takes all the testosterone or the estrogen out of your body. And the estrogen out of your body.

For me, I had the choice. Should I do surgery and then follow it up with radiation and then do some—two or three years of hormone therapy? Or should I try the surgery hoping it’ll be successful? 

 

Andrea Hutton:           

I feel like it’s so difficult. You go to your oncologist, your doctor’s office, expecting them to give you the answers and often in these cases what they actually give you are choices. 

Rick Davis:                 

But it’s really, really hard because most people when they go to their doctors are expecting to be told what they should do and they get frustrated when the doctor says, “Well you could do this, or you could do that or you could do the other.” Then they get even more frustrated when they talk to advocates and the advocates say, “Well be careful of the bias.” Because the surgeon is gonna tell you to do surgery and the radiologist is gonna tell you to do radiation. And they’re each gonna tell you that theirs is the absolute best and that’s probably when you need to see a medical oncologist because a medical oncologist doesn’t have that bias.

It’s a source of major frustration at all levels of disease whether you have low-intermediate risk disease. I mean, even with men on active surveillance, meaning they really don’t need treatment. They’re still faced with that decision of, “Should I do treatment, or should I not do treatment?” And a lot of the doctors will push men who don’t need treatment into treatment for all the wrong reasons.

So, the way that we deal with that situation is to recommend peer support. AnCan does three things. It provides national advocacy. So, we take positions on national issues that are related to cancer. Mostly prostate cancer but not only prostate cancer. It provides personal one-on-one navigation, peer-to-peer navigation. And what we’ve really innovated, and no one else has done this and it was something that I saw was required back around 2010, is we create virtual support groups. 

So, there are a lot of people that cannot get to a physical support group. It may be for geographical reasons because they live in a very remote location. It may be for physical reasons because they have a disability, or it may be for social reasons. The example I always like to quote is the fellow who runs our social media, well our Facebook actually, who was agoraphobic. You can’t get him out of the door, unless it’s a doctor’s appointment he won’t move out the door. So, he certainly won’t go to a support group meeting. But now he’s a regular on support group meetings.

So, what we did is we created an easy to join platform that you can join online, or you can join by telephone and we hold meetings – for prostate cancer, we hold seven prostate cancer meetings a month. Four high-risk, recurrent and advanced disease. Two for low and intermediate disease and one for active surveillance. And the meetings are all free and drop-in. And you move into a group of men, and sometimes women because we love to have caregivers on the call, who will give you the benefit of their own experience with respect to issues you’re facing like, “Should I do surgery or should I do radiation?” Particularly, say, in the low and intermediate group. That’s an issue.

Or, in the high-risk group in the context of what we were talking about before, “Should I add surgery to radiation and hormone therapy? What’s the benefit, what’s the marginal value?” Which is actually very small. It’s maybe three to four percent. So, do you want to roll the dice on the surgery for benefiting about three or four percent and go through all the side effects of the surgery, which are pretty much guaranteed, or do you want to pass that one.

Only you can make that decision, I mean, the doctor can’t tell you. But we can present it in a way whereby the patient feels a lot less confused and a lot less dazed and we can get the rabbit out the headlights. And we can start making that very, very fearful rabbit feel a heck of a lot more warm and comforted. That’s what we do.

Andrea Hutton:           

Do you feel like it’s particularly difficult for men to talk about their diseases? I mean…

Rick Davis:                 

Yeah.

Andrea Hutton:           

 …prostate cancer and that a virtual support group is more effective? Do you—what’s your experience about how… 

Rick Davis:                 

Yeah.

Andrea Hutton:           

…they’re willing to talk about it?

Rick Davis:                 

What we find is that it’s much more difficult for men to talk about the issues that surround the prostate cancer but not difficult for them to talk about the technical aspects of the prostate cancer. So, we’ve actually started a separate group, which we call Speaking Freely, which is a non-technical group for men to talk about everything other than treatment. Now, some may say that it’s to talk about the emotional issues, but we don’t like to use that word emotional, because then we wouldn’t get any members. We wouldn’t get any participants. So, we don’t call any of them the emotional group, we just call it a group to talk about anything you want to talk about but not about treatment.

For the moderator of that group there’s a terrific guy, Rich Jackson. I sort of help him a little bit on that when I’m available. It’s an ongoing fight to keep the—and that’s something that I should add, by the way, it’s a men only group. Because in order to get men comfortable to talk about some of the emotional issues that exist it’s often times easier to keep it a single gender. But the challenge—and that’s open to any cancer. It’s not just prostate cancer but the predominance of men that we get on there are prostate cancer because that’s where we have most of our groups.

But to keep the men off the technical issues is a challenge in every meeting. So, men are happy to talk about their prostate cancer in virtual groups and physical groups. Some are reluctant, but then certain women are also reluctant, but I don’t think that’s the issue. If they can talk about numbers and statistics, they’ll talk. If they can’t talk about numbers and statistics, they have to talk about how it’s affecting their partner or how do they tell their kids or what do they tell the people at work? It’s hard to get them to talk about that and that’s what we try to do in that Speaking Freely group.

In the support group we can change lives. Because we can  introduce a patient to new treatments that they may never have considered. Particularly in the—for advance prostate cancer. Particularly in the management of metastatic prostate cancer. And particularly if that person is not being treated by a genitourinary medical oncologist. But we can give them—we don’t give medical advice just like any support group. 

What we do do is we tell these folks about other situations like theirs that we’ve experienced, and we encourage them to press their doctors and advocate for themselves with questions that will introduce the doctor to new treatment areas. And I can’t count the number of occasions where we’ve changed lives, and we’ve extended life in that because the group has a huge amount of knowledge. I mean it’s an incredibly strong and profound brain trust of prostate cancer knowledge.

Andrea Hutton:           

And if you only had one piece of advice to offer, what is your best piece of advice that you can offer?

Rick Davis:                 

Well, I’m going to move that, if I can, into the people I deal with most who are the people with more complex disease. And it is that you must have a, I’m circling back to the beginning, you’ve gotta have a genitourinary medical oncologist on your team. They have to be running your show. Find somebody who’s really good. Talk to people who know who are good. I mean, we spend a lot of our time referring people to the best GU med oncs around the country because we know who they are. And when we say best, we may not mean best technically, we mean best technically and with their patient manor, which is hugely important. Some of the best happen to be the most compassionate, too.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.