Conversations With Prostate Cancer Experts

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Prevention + Screening

On Thursday, our June issue on prevention and screening debuts.

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Dr. Snuffy Myers says:

In June, we’re talking about screening and stratifying patients after an initial prostate cancer diagnosis. Why? Most of you have already been diagnosed with prostate cancer: that’s why you’re reading this. All of you are in contact with men in your families and communities who desperately need the information that follows. Share it with them.

Pp_June_2017_V2_N10_ThumbSeveral of our conversations focus on controversies surrounding prostate cancer screening. I have long been highly critical of the US Preventive Services Task Force’s (USPSTF) former, and now revised, recommendations. I object to more than their specific recommendations for prostate cancer: I believe the Task Force’s decision-making process is fatally flawed. I also think that the organization is sufficiently insular that it cannot be reformed. The only effective solution is to replace it with a task force that has a sounder basis in both biology and statistics.

How can we effectively diagnose and treat prostate cancer? We need three steps for screening to favorably impact survival.

The first step is to diagnose. As readers of Prostatepedia know, advances in prostate cancer imaging, such as the fusing of MRI imaging with ultrasound, now allow us to locate and biopsy aggressive cancers.

In a conversation this month, Dr. E. David Crawford reviews the molecular markers that allow us to better identify patients likely to harbor prostate cancers that need treatment while stratifying those that don’t.

After a man has been diagnosed with prostate cancer, the second step is to determine the risk the cancer poses to him, as this determines the appropriate treatment. Traditionally, this risk stratification was done using nomograms like the Partin tables or the Prostate Health Index. Our understanding of the molecular changes that determine prostate cancer aggressiveness has advanced rapidly. We now have tests such as the Oncotype DX, Prolaris, and Decipher that improve our ability to predict disease aggressiveness.

The third step after diagnosis is to offer therapy based on the threat posed by a man’s cancer. One benefit of determining risk based on molecular biomarkers is that we can also better identify patients appropriate for active surveillance. This directly addresses the problem of overtreatment.

As a medical oncologist, I have been concerned with finding the best management for men with the most aggressive forms of prostate cancer. There are multiple well-done randomized trials that show improved survival in men with high-risk prostate cancer if they are treated appropriately while the cancer is still organ-confined.

Without screening, we are much more likely to diagnose the high-risk patient only after his cancer has become metastatic. The USPSTF effectively chose to ignore the fate of these patients, condemning them to early death. This is especially hard to accept because the Task Force had this evidence on hand at the time they gave screening the original D- rating and has not adequately revised those recommendations.


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Dispatches From The Hill: Prostate Cancer + The US Government

Mr. Jamie Bearse is the CEO of ZERO — The End of Prostate Cancer. ZERO is a United States based nonprofit with a mission to end prostate cancer.

In the first of a quarterly series, Mr. Bearse updates us on American policies impacting prostate cancer patients.


Each year, prostate cancer advocates from across the United States storm Capitol Hill to fight for patients and families on important issues like: increasing prostate cancer research funding, expanding access to care, and generating awareness.

I’ve worked at ZERO for more than 5,500 days, attended 15 ZERO Prostate Cancer Summits, and met thousands of families fighting prostate cancer from all across the country. They come to D.C. ready for battle to make sure no one else goes through the pain and suffering they’ve endured.

We have had many successes through advocacy. The Department of Defense (DoD) plays a key role in fighting cancer. Through the Congressionally Directed Medical Research Programs, the DoD funds cutting-edge research. Specifically,

ZERO’s advocates spearheaded the creation of the $80M program years ago, stopped a $16M cut in 2011, and stopped it from being eliminated in 2013.

In my tenure, I haven’t seen a federal budget proposal that did not threaten prostate cancer funding. Nevertheless, our advocates persist.

As a result, the Prostate Cancer Research Program has produced the discovery of three novel and impactful treatments for advanced prostate cancer—Zytiga (abiraterone), Xtandi (enzalutamide), and Xgeva (denosumab)—as well as a genetic diagnosis profile to determine aggressive disease.

But 2017 is a banner year! We have learned that funding for the Prostate Cancer Research Program (PCRP) at the DoD may be increased to $90M this year.

The Department of Defense’s medical research programs are a proven business model and an epicenter for groundbreaking research in many medical fields, including prostate cancer. As part of this unique and successful model, the DoD program includes patients in a peer-review panel that chooses which bright ideas to fund.

With the additional $10M in funding, the PCRP will be able to fund as many as 40 new projects. Studies will investigate new tests for advanced disease, surveys to understand its genetic impact in families, and better markers to find the disease and put men on the best treatment pathway.

I started at ZERO in the communications department and I believe in the power of storytelling. This win is credited to the amazing advocates who never give up and speak with a unified voice to their elected officials every year. I’m tremendously proud of their passion and hard work. They are the champions for the three million prostate cancer patients in the fight now, the heralds of inspiring stories from families that have fought courageously, and the heroes for the generations to come.

Our work is not done. Not until we reach ZERO prostate cancer deaths. Our victory today must be defended. Call your Senators and Representatives to protect the $90M for prostate cancer research.

Funding for the peer-reviewed Prostate Cancer Research Program is appropriated under House Report 114-577 and Senate Report 114- 263 in the Department of Defense Appropriations Act, 2017.

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Roni Zeiger, MD Online Patient Communities

Zeiger Photo

Dr. Roni Zeiger left a position
 as Google’s Chief Health Strategist to explore the intersection of social media and health. As part of that journey, he created an online patient community called

Prostatepedia spoke with him recently about online patient communities and the power of connection.

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How did you come to run an online patient community?

Dr. Zeiger: It’s a hard question 
to answer. I’m on this very nonlinear journey that has included being
 a young scientist, then a doctor, and now a patient community builder.

When I was training to be a doctor and then practicing as a physician, I practiced in what I think is a very traditional way.

The reality is that we have an expert-centric healthcare system in which patients and families are generally thought of as passive recipients of hopefully high-quality care they’re receiving from physicians and other members of the healthcare team.

That healthcare system doesn’t work that well and most efforts to improve it continue to be expert-centric.

It’s about discovering new drugs and building better machines and designing smart hospitals.

During parts of my journey, while exploring how technology can improve healthcare, I accidentally started learning about the way patients were using the internet not only to find more information, but also to find each other.

That happened when I was working at Google, where I worked from 2006 to 2012. I studied how people use the Google search box to answer their health questions. While most people were using the search box to look for information, over those years an increasing number of people were looking for others with similar experiences.

If you think about it, connecting
 with each other in the context of our health issues is just normal human behavior. Yet, it’s not something
 that we regularly think about when we practice medicine. I’ve informally polled thousands of physicians over the years and fewer than 1% of them have ever introduced one of their patients to another one of their patients. Isn’t that amazing? That’s not because we have discussed peer support and decided it’s a bad idea. It’s simply because it’s not part of our training and not how we think. Our traditional medical model is designed for patients to receive good care from us and hopefully that works well.

I got obsessed with the idea of
how can we take advantage of this underutilized resource in healthcare. How can we help patients and families find each other, support each other, and learn from each other in productive and respectful ways? How can we make that part of their healthcare experience—not something that happens behind the scenes?

What are the differences between online and in-person support communities?

Dr. Zeiger: I think the differences between online and in-person communities aren’t as large
 as others might think. In both cases, it’s about connection, support, and understanding that you’re not alone. There are things that you can do in-person that are almost impossible online in terms of how you can connect with someone—eye contact and even more obvious empathy. There are things you can do online that are hard to do in person: connect with more people who have had experiences just like yours, not all of whom can show up at the same time for a meeting because they’re sick or they’re far away or they had another commitment. Both types
 of support groups are complimentary and compatible with each other.

The biggest advantage of an online group is convenience. Assuming that you’re comfortable being online,
 it’s easier for some people to spend 15 minutes here and there interacting with their community, rather than meeting at a certain time far away from their homes each month.

Can you explain the concept of creating networks of micro-experts?

Dr. Zeiger: When someone in an online community poses a question, often a certain subgroup of that community gets most involved in the discussion. When a different kind of question is posed, a different subset of the community might have knowledge and experience related to that question or that issue. 
For communities that work really well, the idea is that the most relevant knowledge and experience surfaces in each conversation.

If you think about it, each of us 
is an expert in certain things that we’ve experienced or studied ourselves. Each of us is a micro-expert. Every conversation in
 a community is a unique combination of the perspectives of these micro-experts. This is very different from
 a model in which we decide that
 one person in the community is
 the smartest and everyone turns
 to him or her to answer questions. Instead, we have a community of many individuals who are dynamically learning from each other.

So then this is more of a collaborative team approach?

Dr. Zeiger: Collaborative and team. I love those words. That’s right.

Are you saying that this online collective of patients can become members in
 a patient’s healthcare team—just as 
the doctor, caregiver, and patient are team members?

Dr. Zeiger: Today this is still mostly happening separate from someone’s experience with the healthcare system. But as a patient, you certainly can think of that online community as part of your team.

Today, an online community wouldn’t interact with the traditional parts 
of your healthcare team. You can imagine a future where that might happen. We just haven’t figured out how to do that yet. A lot of community members do think of the community as a really important part of their team.

Can you walk us through how works?

Dr. Zeiger: Smart Patients is really simple. It’s an online space where patients and family members can learn from and support each other. Anyone can sign up directly for the prostate cancer community at

After a quick sign-up process,
 you’ll simply see a bunch of ongoing conversations. You can read the ones that seem interesting to you, participate in any conversations 
that you would like to participate in, and start a conversation if you would like to. That’s it.

Many men with prostate cancer have other diseases—diabetes or other cancer types. Can a prostate cancer patient sign up for multiple communities?

Dr. Zeiger: We want to keep things really simple, especially because a lot of our community members didn’t grow up with computers and social media.

Most people join a community, 
like the prostate cancer community, and then over time we make it easy for them to also see conversations about other topics that might be interesting to them like diabetes
 or dementia or heart disease.

They don’t have to join multiple communities. We make it so that those other conversations just get incorporated into their simple community experience.

That seems very easy. I know other online communities ask you to join each individual group.

Dr. Zeiger: We’ve worked really hard to make it a simple single interface so that just about anybody can use it.

You also have a clinical trials section. Can you talk about how that works?

Dr. Zeiger: As we were building, we got
 a lot of requests to make it easy for patients to search for clinical trials. There is a government-run database that anyone can access at, but a lot of patients find that difficult to use.

We created an easier way to
 access that same information and incorporated it into our community platform. It’s really easy for someone to find a trial and start a conversation in the community about it. Patients will often find a trial of interest to them and then ask the community what they think about that trial or
if they have other suggestions.

So you’re pulling information about these trials directly from

Dr. Zeiger: Yes.

A patient, researcher, or pharmaceutical company doesn’t need to post it to
 the conversation: the information automatically feeds into your platform?

Dr. Zeiger: Correct, we pull all of the trials from

Is there anything else patients should know about or the promise of online patient networks?

Dr. Zeiger: I think many of us underestimate how much patients know and how much they can support each other. Most of your readers could become a great resource for other patients by participating in an online community. It’s not just about finding information you might need. It’s rewarding to so easily be able
 to help each other.