Conversations With Prostate Cancer Experts

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Gay Men + Prostate Cancer

william_goeren_mediumWilliam Goeren is the Director ofClinical Programs for CancerCare, a New York-based organization that offers counseling, support groups, education, and financial assistance to cancer patients and caregivers. Prostatepedia spoke with him about common issues gay men with prostate cancer face.

Why did you become a social worker?

Mr. William Goeren: I became a social worker in the mid-1980s in response to the AIDS crisis. This was not the direction I was headed, but the AIDS crisis had so shifted my outlook on life and altered my priorities that I needed to figure out a new direction, a new version of myself.

Like many young men in their early twenties, I had come to New York with dreams of a fulfilling acting career. In the midst of that, I had a shift in priorities. It was a rather dramatic shift. I was just trying to come to grips with grief, loss, death, and dying. And that’s when I attended a five-day workshop called “Life, Death, and Transition” presented by Elisabeth Kübler-Ross in upstate New York. Every day we had workshops, presentations, and individual work in her intervention model designed to help people understand death. It was very powerful to be in her presence. I knew who she was prior to going and was rather in awe of her.

After that workshop and others with a number of other high-profile people of that era, a hospice nurse strongly stated I would make a wonderful social worker. I applied to school, and my path very much changed at that point. I felt very passionate about my new direction.

How did you start at CancerCare and what do you do there?

Mr. Goeren: Earlier in my career, a gay male client in his early 30s who had a rare salivary gland cancer came in to where I was working and said that he was scarred after surgery and radiation. He said: “As a gay man with cancer, there are no services for me at all. If I had HIV, I would have services from A to Z.”

That comment stuck with me, so when I got to CancerCare in 2008, I started working on an LGBT cancer program here. In 2011, I collaborated with a New York organization called Services & Advocacy for GLBT Elders (SAGE), which provides psychosocial and concrete services for gay and lesbian elders. We launched a face-to-face support group for older gay men with cancer. That was the first actual service that we were able to launch. Though there’s a wide range of cancers in the group, the majority of the men have prostate cancer.

We’ve made attempts to launch other services; some are more successful than others. We started a group for gay women with cancer here in New York, but it was difficult to populate and maintain. We launched some online support group services, which are very robust and are for our national LGBT clients. There are currently two online groups for the LGBT community, one for LGBT cancer caregivers and the other for LGBT persons with cancer. Eventually, I would like to launch an online support group for the LGBT community who are bereaved because of cancer. We have a few publications, and I’ve done some talks at some of the national oncology social work conferences. In general, CancerCare now has 42 online support groups, which are social worker-facilitated, password-protected posting boards. These are not live groups but very much function like a face-to-face group.

What are the particular concerns or challenges facing gay men with prostate cancer?

Mr. Goeren: There is some research going on that is limited and minimal.

For example, David Latini, Daniela Wittmann, and Thomas Blank are doing research focusing on issues in the LGBT community and cancer and, in certain studies, research specifically related to gay men who have prostate cancer. They are interested in how gay men, differing from their heterosexual counterparts, react to being diagnosed; the impact of the diagnosis and treatment on their sense of self, emotional wellbeing, and quality of life; as well as how the medical community could be more sensitive and better trained in LGBT and cancer issues.

Research has shown that many gay men feel great shame, stigma, and embarrassment triggered by their emotional reactions and the physical changes related to prostate cancer and its treatment. This shame and stigma touches upon, for many, established internalized homophobia, previous experiences of discrimination and harassment, history of coping with, and in some cases, living with HIV disease, and negative experiences coming out.

Many men experience urinary and bowel incontinence, altered sexual function, and penile shortening (an underreported and under-discussed side effect). All of these impact a sense of masculine identity for men in general. For many gay men, prostate cancer can have a compelling and compromising impact on one’s sense of self within an already disenfranchised and diverse community, his self-esteem, and his ability to relate intimately to other gay men. Gay men report losses associated with prostate cancer for both the man with cancer and his partner. These losses include spontaneity, intimacy, and normalcy in sexually relating, which can lead to fears of rejection, emotional withdrawal, depression, and anxiety.

In addition, HIV affects many gay men who have cancer, whether they live with HIV, have survived multiple HIV-related losses, or are coping with issues of safer sex and determining their risk of exposure and infection. Another immense challenge for a gay man with prostate cancer is finding an oncologist who is educated in the complexly sensitive and layered issues that confront any gay man with prostate cancer. It is essential that an oncologist provide a comfortable, secure, and safe atmosphere, in which a gay man can disclose and discuss his sexual orientation, lifestyle, and activities.

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Living With Neuroendocrine Prostate Cancer

Stan P. has neuroendocrine prostate cancer. He spoke with Prostatepedia about his experiences with this aggressive form of prostate cancer.

How did you find out that you had prostate cancer?

Stan P: It was a PSA taken by my primary physician. It was taken kind of late. It came out to be 6.2, which is fairly high. After that, I started consulting around trying to find a doctor to treat me. That was back in 2006.

How did you find out that you had neuroendocrine prostate cancer? Was that when you were first diagnosed or was that after you’d been on some kind of treatment?

Stan P: I was taking Zytiga (abiraterone) for almost two years. The physician was also running blood tests. One of the substances in the blood test that stood out was this bone-specific alkaline phosphatase. It started to go up while at the same time my PSA was undetectable. It had reached undetectable status about a year after taking Zytiga (abiraterone).

The physician saw this one level going up, so he prescribed an F18 sodium bone scan along with a couple of other specialized blood tests. One of the blood tests was LDH, which I think detects cellular injury. Another was chromogranin A that detects neuroendocrine tumors. The third one was CEA, carcinoembryonic antigen, a marker for colon and thyroid cancer.

The one that stood out was the chromogranin A. It was high. At the same time, the F18 scan showed two neuroendochrine tumors. One was in the ileum (the end of the small intestine) and the other one was in the C5 vertebrae. With the undetectable PSA, these results from the scan, and some of the blood results, the physician suggested that it was probably neuroendocrine, which I didn’t even understand at the time.

He said something about adenocarcinoma being differentiated into this neuroendocrine tumor. From that point, his recommendation was to try some platinum-based chemo. I was not feeling any symptoms. I was not in any pain, and I was still doing my normal thing. He recommended that I undergo Xofigo (radium-223).

Were you still on the Zytiga (abiraterone) at this point or did he take you off the Zytiga?

Stan P: I was still on Zytiga (abiraterone) when all this happened. He took me off later because my kidneys started to show side effects from it—high creatinine. He took me off of that to see if it would lower the creatinine levels, and it did, so he kept me off it. I continued to take an androgen agonist (degarelix), which I’m still taking.

What was your initial reaction when you heard all this? Did you immediately start researching about neuroendocrine prostate cancer? How did you respond?

Stan P: I had no idea what a neuroendocrine tumor was. I didn’t even know what a PSA was. I got this medical explanation, and then when I started delving into it on the Internet, I found out that only 1% of the prostate cancer patients get this or have this condition. Then I knew it was serious.

There really are no cures. I consulted with two other prostate specialists. One was the chief of hematology and the other was the chief of prostate cancer research at a teaching hospital. One doctor said that he treats this through standard-of-care treatment, which means platinum-based chemo. The other doctor told me to go back on the Zytiga (abiraterone), which really didn’t make any sense. My understanding is that this neuroendocrine tumor does not have any androgen receptors. But the real issue is there aren’t many doctors around who spend a lot of time with this type of cancer.

What is your current doctor’s plan going forward?

Stan P: I just went through six months of Xofigo (radium-223) and completed that at the end of March. The recommendation has been to wait for three months and get a scan then. In the meantime, I take Firmagon (degarelix). During the six months on Xofigo (radium-223), I had a couple of scans. One was a technetium-99 bone scan, which was performed after two treatments with Xofigo (radium-223).

The strange thing was they only found one neuroendocrine cancer in the ileum. They did not find the one at the C5 vertebrae. Maybe the F18 was oversensitive to the scan. I don’t know.

At the same time, I entered a clinical trial for C11 Acetate PET/CT scan. They were giving me these C11 Acetate PET/CT scans every month, and I decided I should stop doing that because it was affecting my blood counts too much. I had two C11 Acetate PET/CT scans, and both were uneventful. They didn’t find anything, which I kind of expected because my PSA is undetectable. They did not detect any of the neuroendocrine tumors either.

Since ending the Xofigo (radium-223), I have not had any scans. I’m waiting another month, and then I’ll get another scan to see the effect of that. During the time I was undergoing Xofigo (radium-223), the blood tests were becoming much more positive. The bone-specific alkaline phosphatase went down to normal levels. That indicated that maybe the tumor was not growing anymore. The plan right now is to just stay on Firmagon (degarelix) and get another scan in another month. Treatment will be scheduled then.

Do you have any advice for other men who have been told that they have neuroendocrine prostate cancer?

Stan P: First, make sure you actually have a neuroendocrine tumor. Then consult with a doctor who specializes in neuroendocrine prostate cancer. I found a nationwide list on the site And just keep the faith. I have a positive outlook that something’s going to come to help me either put off the growth of this tumor or to cure it. I keep looking, and that’s about all I can do. Just keep the faith.

What about any advice for doctors treating patients like you?

Stan P: I would recommend that the doctors educate themselves on the ongoing clinical trials for this disease. Even if they don’t know about any while the patient is visiting them, they should at least tell the patient that they will do research themselves. I’m sure doctors have a better way of finding these things out than the layman.

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Dispatches from the Hill: The Prostate Cancer Research Program’s $90M at Work


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 his second quarterly column for Prostatepedia, he updates us on American policies impacting prostate cancer patients.

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In my last column, I shared news about our annual fly-in day, the ZERO Prostate Cancer Summit, and the major research funding victory on Capitol Hill for prostate cancer advocates. Congress had just earmarked $90 million for the Prostate Cancer Research Program (PCRP) in the FY17 budget as part of the Defense Appropriations Bill – a $10M increase over last year. This is the program’s first funding increase in more than a decade.

So, what does this funding upgrade mean for prostate cancer patients? More research and innovation directed at a cure? Yes. The additional $10M will fund several additional projects; new research that could lead to more treatments and save lives.

The Department of Defense’s (DoD) medical research programs are an epicenter for groundbreaking research. In the last six years, the Prostate Cancer Research Program has awarded grants that have led to three new, life-extending treatments: ZYTIGA (abiraterone acetate), Xtandi (enzalutamide), and XGEVA (denosumab), as well as a genetic diagnosis profile to determine aggressive disease. The program has awarded more than 50 prostate cancer research grants in the last year alone.

In addition to funding critical research, the DoD program created a peer-review model, which brings patients into the R&D process, helping choose which ideas to fund. The program also created the Prostate Cancer Clinical Trials Consortium (PCCTC), collaboration between several top cancer centers in the U.S. The Consortium creates a knowledge center and makes conducting clinical trials more efficient and cost-effective, speeding up the pipeline for potential therapies. As a result of these programs, treatments for prostate cancer are no longer isolated to a laboratory, but instead are created with feedback from the prostate cancer community.

The outlook for continued funding of the DoD’s PCRP is positive. Just prior to the July 4th recess, the House Appropriations Committee approved the FY18 Defense Appropriations Bill, which preserves the $90M annually for prostate cancer research. This is a step in the right direction thanks to the dedication of prostate cancer advocates and champions in Congress.

ZERO will fight every year to ensure that this critical research funding remains in the DoD’s budget. The PCRP has a clear impact on prostate cancer, and thanks to the increased funding, we’re one step closer to a much-needed cure. I hope that you’ll join us to advocate for the PCRP and similar programs to help end prostate cancer.

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Dr. Drake On Immunotherapy For Prostate Cancer

DRAKE charlesDr. Charles G. Drake recently joined New York-Presbyterian/ Columbia University Medical Center as the Director of Genitourinary Oncology, Co-Director of the Cancer Immunotherapy Program, and Associate Director for Clinical Research at the Herbert Irving Comprehensive Cancer Center.

Prostatepedia spoke with him about current trends in immunotherapy for prostate cancer

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What are some of the more promising approaches to immunotherapy being investigated now?

Dr. Drake: I’m not 100% sure that everybody in the prostate cancer community is aware of this, but investigators at Merck did what is called a basket trial. They looked at patients with cancers that have a defect in what is called mismatch repair. Cancers that have a defective mismatch repair accumulate many mutations. Those mutations serve as antigens, or targets, for the immune system. It was first shown by Drs. Luis Diaz and Dung Le at Johns Hopkins that in colorectal cancer, where mismatch repair is common, checkpoint blockade with anti-PD-1 is very effective. It turns out that there are mismatch repair patients with every kind of cancer, including prostate cancer.

Based on this large basket trial, the anti-PD-1 antibody Keytruda (pembrolizumab) was recently approved for patients’ cancers that have mismatch repair defects. Across multiple tumor types, there have been really dramatic responses reported in the literature. This means that prostate cancer patients who have mismatch repair defects now have a second immunotherapy option. What percentage of prostate cancer patients have mismatch repair? It’s probably on the lower side, likely in the 3 to 5% range, but since prostate cancer is so common, that is actually a lot of patients.

I think that is fairly exciting and that perhaps the entire community is not completely aware that it is happening. True mismatch repair is rare in prostate cancer, but a significant fraction of patients have other mutations that lead to DNA damage repair defects. Those defects are different and are called DNA damage repair mutations. There have been some studies suggesting that this is actually pretty common in men with metastatic disease—as high as 10 to 20%. Those patients have been shown in a landmark paper by Dr. Johann de Bono published in the New England Journal of Medicine to respond to PARP inhibitors, which are reasonably well-tolerated oral drugs. There are now several ongoing trials testing this.

It is possible that these same patients might also respond to immunotherapy. I was part of a trial that Dr. Julie Graff published last summer that showed that out of the first 10 patients treated with Keytruda (pembrolizumab) who are progressing on Xtandi (enzalutamide), about three had a really beautiful response. Only one had true mismatch repair, but it could be that the other patients have mutations in DNA damage repair. That is important because that would extend the number of patients with prostate cancer who might be eligible for, or likely to respond to, anti-PD-1 or anti-PD-L1 agents.

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To Biopsy or Not To Biopsy?

David Crawford is the distinguished Professor of Surgery, Urology, and Radiation Oncology, and head of the Section of Urologic Oncology at the University of Colorado Anschutz Medical Campus as well as the driving force behind PCMarkers.

Prostatepedia spoke with him about how practitioners can fine-tune prostate cancer screening.

Crawford copy

Why did you become a doctor?

Dr. E. David Crawford: I got my interest in medicine from my family. They had
a nursing home. I worked there when I was in high school and college, so I was around patients and doctors. I saw the compassion the doctors had and really liked it. I got to know a few of them.

Even though that was only a snapshot, I thought medicine would be a good thing to do. Then I got a job during college doing evaluations of people before surgery. That was how I got interested in urology.

My interest in prostate cancer began when I was at the University of California, Los Angeles, as a Fellow. I was dumbfounded that most of the patients we saw with prostate cancer were advanced and incurable.

I had an opportunity to work with Schering Corp. I did a study and got one of their drugs called Eulexin (flutamide) approved.

A man named Perry Lieber from
Las Vegas came to see me. The only way he could get Eulexin (flutamide) was on my Phase III trial. He was
a spokesman for Howard Hughes. He wanted to get the word out about early detection for prostate cancer. We started some of the early screening back in the 1980s in Las Vegas and
in Colorado. Unfortunately, he died
of prostate cancer.

This was in 1988. We didn’t know what we were doing. We had PSA; we were testing and biopsying a lot of people. At first, that was good because we found a lot of aggressive prostate cancers.

Once we filtered through those, though, we were biopsying people at lower and lower PSAs and finding prostate cancers that didn’t need
to be found. There was a lot of overdiagnosis and overtreatment.

That went on for a while. Then the US Preventive Services Task Force said they think screening does work, but that it does more harm than good, so they couldn’t recommend it. (They have more recently changed their recommendations.)

That put the brakes on things, but I think it was needed. When we do too many biopsies and rebiopsies and overtreat people, we have no way to restratify them.

I think the way forward is pretty simple. It involves prostate cancer markers: blood, urine, and tissue-based markers.

But first consider who orders PSA tests in the United States: family practice doctors order 92% of PSA tests. We have to educate these family practice doctors.

I did a study a few years ago that looked at the PSA cutoff of 1.5 ng/ ml. What if you find prostate cancer in that zone of 1.5 to 4? We found that 70% of men who had their PSA analyzed had a level of less than 1.5 ng/ml and, therefore, could come back in 5 years for another one.

That’s an easy message: a PSA above 1.5 to 4 ng/ml is a danger zone. Prostate cancer marker tests come into play in men with PSAs in that gray zone of 1.5 to 4 ng/ml.

Everyone is talking about informed decision-making with these tests before a PSA is performed, but this is not going to happen. Family practice doctors have more significant things to talk about with their patients: obesity, hypertension, or diabetes. They don’t get informed decision to check your cholesterol, your blood pressure, or your weight. They get informed decision after the fact.

I think you should do the same thing with PSA. Doctors should order the PSA tests in the right group of people. If the PSA is less than 1.5, no discussion is needed. Tell the man to come back in five years.

If his PSA is greater than 1.5, we need the next layer of testing and discussion. The goal right now is simple.

PSA is a frontline test to help identify people at risk for having prostate cancer. PSA doesn’t tell us what kind of risk. It doesn’t tell us if the man has low- grade or high-grade prostate cancer. That is where some of these new tests come in. PSA screening by itself, without any further testing, is gone. PSA is just the first test.

If a doctor were considering doing a biopsy and worried about prostate cancer, the next step would be genomic testing.

What sorts of genomic testing would be appropriate in this setting?

Dr. Crawford: The tests fall into three buckets: blood-based, urine-based, and tissue-based.

The ones I’m working on now are either blood- or urine-based tests. The prostate health index (PHI) is a formula that looks at several forms of PSA to come up with the relative risk of having prostate cancer. Phi is FDA-approved in the US for use in men with a PSA above 4: it gives their relative risk of having prostate cancer.

There are two issues with PHI. First, in Europe, the PSA cutoff is 2. In the United States, the PSA cutoff is 4. But we still have a lot of prostate cancer in men with a PSA between 1.5 and 4. We published a paper that showed a 10-13% higher risk in men with a PSA between 1.5 and 4.

Second, we need more data on PHI levels and high-grade cancers. We’ve done some studies that show that there seems to be a good correlation between high PHI levels and high-grade cancers.

The other test is 4Kscore, which looks at the four prostate-specific kallikreins in the blood: Total PSA, Free PSA, Intact PSA, and Human Kallikrein 2 (hK2). The company adds their secret sauce and gives your relative risk of having high-grade prostate cancer.

If your 4Kscore is less than 7%, you don’t worry. Above 7%, you do. Still, some people have high-grade cancer when their 4Kscore is below that—you have to account for other risk factors—but it’s another good blood test.
It’s easy to do. The cost is down
to less than $700 now. They’re trying to get Medicare coverage.

Another test is the urine-based test SelectMDx. This test is done after a digital rectal exam. It is based on two genes that are overexpressed
in high-grade prostate cancer. You measure the messenger RNA in urine.

What I like about SelectMDx is that if the test comes back negative, it has a 99% negative predictive value that you don’t have a high-grade cancer like a Gleason grade 8, 9, or 10 and a 98% chance you don’t have a Gleason 7 or above cancer.

If the SelectMDx comes back negative, it makes you feel really good. If it comes back positive, it gives you a relative risk of low-grade and high-grade cancers. The aim is to find the higher- grade cancers.

Right now, I think one of the more promising genomic tests is the SelectMDx.

Why so much of a push to develop these molecular markers?

Dr. Crawford: It’s time. This is the era of personalized medicine. This is a way of addressing the issue of overdiagnosis and overtreatment.

There are approximately 1.4 million prostate biopsies done in the United States every year, but we only diagnose a couple hundred thousand people with prostate cancer. Many get rebiopsied and rebiopsied and rebiopsied.

If your biopsy is positive and you’ve picked up a low-grade cancer, you might then choose a molecular marker
to determine your cancer’s aggressiveness. These are the tissue-based genomic tests, such as Oncotype DX, Prolaris, and Decipher.

Another is called ConfirmMDx.
This is a tissue-based test that
looks for genetic changes called methylation genes around the cancer. (These are areas of cancerization.)

If the biopsy is negative and we order ConfirmMDx on the tissue and that test comes back as positive, it means we’ve widened the target area: we may have missed something and need to go back and look again with another biopsy.

Are prostate cancer markers covered by insurance?

Dr. Crawford: Only PHI and PCA3 have been approved. (PCA3 has pretty much gone by the wayside, though, after the introduction of SelectMDx.)

It happens this way: the company does some clinical trials, they bill insurance, and then they submit to Medicare. They get local coverage determination in which the test will be covered for a period of time while they continue to investigate.

The companies who make these markers are not big companies with deep pockets. They have a limited budget.

If we wait for an endpoint of death on some of these studies, none of us will be around to see the results. We need to think about other endpoints. We are looking at these other endpoints.

I’m excited about all this. I think we’ve got a way forward now. Most family practitioners believe
that screening does do some good, but they know that it also does some harm. Now that we’ve got the tools to deal with screening, let’s deal with it. Patients believe in screening. We don’t want to go back to where we were with metastatic disease being the norm.

Do you think the former recommendation against screening ended up having
a positive impact? That it forced the prostate cancer community to reevaluate the issue of overtreatment?

Dr. Crawford: A lot of people don’t think that, but I do. There was a lot of overdiagnosis and overtreatment.

Sometimes when you tell a man
he has cancer, he wants it taken care of yesterday. Many don’t understand that some prostate cancers are like skin cancers. You don’t cut off your arm because you have a small basal cell cancer on your wrist. It’s the same way with prostate cancer. There are low-grade, nonthreatening Gleason 6 cancers.

Are these prostate cancer markers now widely accepted among family practitioners?

Dr. Crawford: No. Family practice doctors don’t know much about these markers at all. Urologists don’t either. This is the beginning of a long educational process. It’ll take patients asking about the tests. Often, patients drive change: that’s just the way things happen.

Many of our readers are influential in their communities. What would you say to those men about getting the word out about prostate cancer markers?

Dr. Crawford: There are a lot of hereditary and germline mutations being put forth in prostate cancer:
as many as 5% up to 20% of prostate cancer patients will have some of these mutations.

One of my recommendations
is that if you have germline mutations of prostate cancer like BRCA2 (and others) your family members should get tested.

The PSA cutoff of 1.5 falls in very nicely with this. If your PSA is 1.5 or above, get the tests we discussed— like the SelectMDx or the 4K.

What about repeating these tests? If a man consistently has a high PSA, would it make sense to keep repeating these tests?

Dr. Crawford: He should be referred to a urologist.

Are these tests at all useful in men on active surveillance or with low-grade cancers?

Dr. Crawford: Thirty percent of patients fail active surveillance. When these men eventually have surgery, sometimes they have adverse pathology. Why did that happen? It happened because when we did the biopsy, we missed the bad cancer—the Gleason 7s, 8s, 9s, and 10s. Some of these tissue markers, like Prolaris and Oncotype DX, can help in that scenario.

Part of the follow-up for men on active surveillance is a repeat biopsy. I haven’t met a lot of men who like to have biopsies every year, but they do it.

After a while, doing repeat biopsies and monitoring gets to be more expensive than treatment. A urine test like SelectMDx or 4K can help you determine who needs to be rebiopsied.

What I’m looking at now is whether or not doing the SelectMDx every other year can eliminate the need for biopsies. And I’m finding the answer is yes.


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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.

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Crowdsourcing Cancer Funding

In May, Prostatepedia is talking about collaborations within the prostate cancer community.

Not a member? Join us.


Dr. Jonathan Simons, Mr. Andy Astrachan, Ms. Colleen McKenna, and Mr. Tom Andrus are the driving forces behind Prostate Cancer Foundation’s Many Vs Cancer movement set to launch this month.

Prostatepedia spoke with them about the vision behind Many Vs Cancer and how it fits into the Prostate Cancer Foundation’s research funding programs.

How did you become involved with Prostate Cancer Foundation and the Many Vs Cancer movement?

Mr. Andy Astrachan: In late 2013, my family doctor felt a nodule on my prostate during my annual checkup. My PSA was slightly above 1.0 at the time and up slightly from the year before. An MRI was highly suggestive of cancer. I immediately reached out to my friend Mike Milken for advice. Mike referred me to his urologist and introduced me to Dr. Jonathan Simons who runs Prostate Cancer Foundation (PCF). I feel very fortunate to have been able to plug directly into the PCF for guidance.

A biopsy confirmed that I had prostate cancer. A month later, I had surgery. A few months later, Mike asked me to join PCF’s Board. I am honored to serve on the board for the benefit of all prostate cancer patients.

Ms. Colleen McKenna: As Andy said, he was diagnosed several years ago with prostate cancer and subsequently joined PCF’s Board because of his relationship with Mike Milken.

When Andy joined the Board, the primary focus of PCF’s communication was to the medical, research, and scientific communities. As a patient, Andy felt that PCF should also be focused on communicating with patients in a language that can be easily understood to provide them with the same level of information that he received from PCF. Andy understood instinctively that by tilting communication to the patient, PCF would not only help all patients in their times of need, it would also be able to connect and mobilize a massive community.

Step 1 was a brand-new website which was launched in October 2016. Step 2 was an appeal to the community of patients and those who love and support them to crowdfund the money required to expedite a cure. The appeal became a global movement of millions of people called Many Vs Cancer. PCF has done amazing work funding the most critical research over the last 24 years. The results of that work put us on the precipice of a cure. Now is the time to finish the job.

Andy recruited me to work for Many Vs Cancer and I immediately thought of involving Tom Andrus, with whom I’d worked at a company called Symantec.

Mr. Tom Andrus: In 2010, my wife Anne was diagnosed with Stage 4 appendix cancer. It had spread throughout her abdomen. We did everything that well-informed, connected people do. We worked with all the major leading hospitals. We did everything that we could do

One of the things that she said to me was, “I’m hopefully going to be one of the first people cured of this. If not, I’ll be one of the last to die from this cancer.” She made it about two years.

At the time, precision medicine just wasn’t there. You could see, though, that if we knew enough about people’s cancers and their tumors we could come up with ways to precisely treat and not just use blanket radiation or surgery or chemotherapy.

Colleen introduced me to Dr. Simons who explained that in the last five years the prostate cancer arena has changed radically: there are now 19 precise targets in prostate cancer and multiple trials in place trying to figure out what type of treatments you can do for each of those different genetic markers. Dr. Simons also explained that because of genetic overlap, the work we do in prostate cancer research will improve treatments in many other cancers, including, colon, ovarian, and breast cancer.

When Colleen reached out to me, I was ready for something fulfilling to do. Something that would change the world. After listening to Dr. Simons and Andy Astrachan explain their vision for PCF digital to democratize the dissemination of information to all patients and for Many Vs Cancer to empower all patients to participate in curing cancer, I felt compelled to sign on. I have a long history of building tech companies. I thought if I can put what I’ve learned into such an important cause, we could educate patients about the power of precision medicine, empower them to participate in fundraising, and engage them in the science, that would be the best thing I’ve ever done.

What is the Prostate Cancer Foundation’s mission?

Mr. Astrachan: PCF is the world’s leading philanthropic prostate cancer research organization and is certainly among the most effective cancer research organizations of any type in the world. For the past twenty-four years, PCF has raised over $700 million for research, funding over 2,000 groundbreaking research programs at over 200 cancer centers and universities in 19 countries. We’ve funded 3 Nobel Laureates and many hundreds of leading scientists in the fields of genetics, immunotherapy, and big data analytics from cloud computing.

Since inception, PCF has been a pioneer in new drug development, providing key funding for FDA-approved treatments that improve survivorship. Thanks in large part to the work of PCF researchers, in the last decade six drugs for men with advanced prostate cancer have been FDA-approved. Of those six drugs, five were FDA-approved because they actually prolonged patients’ lives, rather than simply easing their symptoms.

The $700 million raised directly by the PCF has attracted an infusion of more than $10 billion additional funding for prostate cancer research from government agencies, venture capital investments, the pharmaceutical and biotechnology sectors, academic research centers, and other philanthropies. In the United States alone, these new treatments have saved the lives of hundreds of thousands of men.

PCF has reduced US prostate cancer deaths by 52% in the past 20 years according to American Cancer Society statistics.

Mr. Andrus: Mike Milken founded PCF when he found out that he had prostate cancer. At the time, there was very little, if any, prostate cancer research going on. He set up the foundation with some very forward-thinking thoughts and processes on how research should be funded.

We’re fast. We’re open. Our approach is to get people funded quickly. We promise to decide on an applicants’ grant proposal in 60 days as opposed to the year or more it takes for a big NIH grant. We also require all our researchers to share their information with PCF in real time and with each other, even before they’re published. We select and coordinate Dream Teams across different organizations and sometimes continents to conduct research.

PCF specializes in early-stage or venture funding of research ideas. A lot of the recently-approved prostate cancer treatments came from our early-stage funding after which drug companies, governments, and other institutions put up a lot of money. But it is PCF that gets the ball rolling by funding the initial science. Thereafter, every dollar we put into research ends up being matched 20 to 30 times by the government or a pharmaceutical company to get drugs to market.

Ms. McKenna: Mike Milken took the model he utilized in his investment career and applied it to scientific research. PCF employs a venture philanthropy model that identifies those researchers with the greatest promise. Included in this model is PCF’s Young Investigator Program. Like a farm team in baseball, the PCF Young Investigators are the brightest young scientists around the world who are identified early in their careers and supported with smaller grants that give them a chance to develop their science. A number of Young Investigators have gone on to develop important research.

Talk to me a little bit more about the kinds of research you fund?

Dr. Simons: One of the best examples of our international collaborations is the PCF Dream Team led by Dr. Arul Chinnaiyan of the University of Michigan, Dr. Charles Sawyers of Memorial Sloan Kettering Cancer Center, and Dr. Johann de Bono at the Institute of Cancer Research/Royal Marsden in the United Kingdom. The Dream Team was awarded $10 million and has sequenced the genomes of over 500 castration resistant prostate cancer tumors and identified the prostate cancer genomic landscape.

Through this team and another Challenge Award team, we supported de Bono’s TO-PARP trial that found patients with DNA damage repair mutations may benefit from treatment with the PARP-inhibitor Lynparza (olaparib). (See Prostatepedia June 2016 for a conversation with Dr. Joaquin Matteo about the TO-PARP trial).

That Dream Team also found that 1 in 9 metastatic prostate cancer patients have cancers caused by inherited DDR mutations, which has implications for treatment. Family members should also be screened for the mutation.

Current treatments we have funded include Zytiga (abiraterone), Xtandi (enzalutamide), and Taxotere (docetaxel.)

We’ve also funded the development of a precision medicine platform for prostate cancer and the development of prostate cancer organoids, or laboratory-grown mini-tumors that serve as avatars for studying tumor biology and drug sensitivity.

Other promising treatment approaches we are funding include therapies that target mechanisms of resistance to androgen receptor targeted therapy, such as inhibitors of glucocorticoid receptor (GR) therapies, which target constitutively active androgen receptor-variants and extreme androgen receptor-pathway inhibition.

We’re also funding several immunotherapies that will enter clinical trials this year: CAR T cells that target Prostate-specific Membrane Antigen (PSMA) and Prostate Stem Cell Antigen (PSCA) and vaccines against Prostatic Acid Phosphatase (PAP).

We’re funding several clinical trials that look at combining radiation therapy with immunotherapy, as radiation may sensitize tumors to immune-killing and promote the activation of immune response. (See Prostatepedia April 2017 for a discussion with Dr. Emmanuel Antonarakis about such a trial.)

Lastly, we’ve recently launched an initiative to bring precision medicine into the Veterans Administration (VA) system, so that every veteran has the best level of care available. The sacrifices American veterans have made for all of us have earned them not only our everlasting respect and gratitude, but also the best standard of care and the benefits of the latest medical breakthroughs. The United States Department of Veterans Affairs (VA) works to make sure they receive both—and more.

We plan to invest $50 million over the next five years in a precision oncology initiative to expand prostate cancer clinical research among Veterans to speed the development of new treatment options and cures for prostate cancer patients.

Approximately 12,000 veterans are diagnosed annually with prostate cancer. Given the demographics of our veterans, prostate cancer is an especially urgent issue. One in eight men will be diagnosed with prostate cancer. It’s the most frequently diagnosed cancer among veterans, accounting for a third of all male cancer cases.

African-American men are 64 percent more likely to develop prostate cancer than any other race or ethnicity, and they’re 2.4 times more likely to die from the disease. Yet we know little about the biological reasons for these disparities.

The timing of this partnership is crucial: never in history have we been so close to solving so many medical research challenges.

Can patients donate to specific areas of research or simply to your organization as a whole?

Mr. Andrus: Right now, they fund the Foundation directly.

Ms. McKenna: We haven’t made a concerted effort to market PCF to the general public. Our Board feels that PCF is the best-kept secret in medical research. But that is now about to change with the launch of the Man Vs Cancer movement. In the past, our focus has been on relatively larger donations that are not earmarked specifically with the exception of grants in support of a specific young investigator or a Dream Team. That too will change with Man Vs Cancer, which will allow more targeted donations by scientist, by gene, or by research center.

Mr. Andrus: One of our goals is to empower people to not only give money, but also to participate.

The Man Vs Cancer movement is your brainchild, Mr. Astrachan. Can you speak a bit about your vision?

Mr. Astrachan: As a PCF Board member, I quickly understood that the rapid pace of medical research demanded greater funding than our historical fundraising model allows. We have now identified all 19 gene targets and their biochemistry in driving prostate cancer. We finally have exact blueprints for precision cures and the miraculous science of how to target genes is thriving. And we have identified the researchers capable of doing this kind of research. This is the golden age of prostate cancer research and now is the time to fund aggressively and finish the job.

PCF now stands on the precipice of curing prostate cancer. Prostate cancer will be the first major cancer to be cured.

At this point, it’s all about money. At one of the earliest Board meetings I attended, Dr. Simons made a compelling case for the idea that $1 billion in venture funding over the next 5 years would be sufficient to put next generation precision drugs into development for all 19 genes that can cause prostate cancer.

When I heard that I said to the Board, how hard can it be to raise $1 billion over the next 5 years? Because $1 billion over 5 years is 4 or 5 times what PCF historically raises, most if not all, of the Board looked at me like I was crazy.

But I am not crazy. I was just doing a different calculation than they were. I understood that by harnessing the power of technology, social media, social networking and crowdfunding, we could mobilize a massive global community of prostate cancer patients and their loved ones into an army with the collective financial power to fund our own cures.

As Dr. Simons talked, I made calculations on the cover of my board book. That math is compelling. There are roughly 3 million prostate cancer patients in the United States and many millions more worldwide in addition to many multiples of that number who love and support us.

That is a huge pool of people. If only 183,000 patients—a tiny percentage of patients—give $100 a year for 5 years and recruit 10 people to support us with the same financial commitment, that amounts to $1 billion.

With that calculation, Man Vs Cancer was born. Man Vs Cancer aims to reach the millions of patients worldwide and the far greater number of people who love and support us. The Many Vs Cancer global movement is by far and away the most ambitious and most powerful patient-lead community ever assembled for any disease by anyone for any purpose anywhere. Crowdfunding the last dollars needed for research from a vast audience of patients and our friends and loved ones means that by many of us doing a little, prostate cancer will be cured for everyone without overburdening anyone.

Some of us will give money, some of us will organize fundraising events and teams, and some of us will do both.

As a patient, I know as well as anyone that all patients are willing to invest in research for their own cure as long as they have justifiable confidence that they’re funding the right research being done by leading researchers and administered by the acknowledged global leader in funding prostate cancer research. I believe our community will respond generously when it understands how close science is to delivering effective medicines, that many PCF-funded breakthroughs are currently occurring in small trials around the world, and how pivotal PCF has been—and will continue to be—in virtually every prostate cancer treatment advancement since 1993.

When does Many Vs Cancer launch?

Ms. McKenna: Mid May. We’ve just asked the first 1,000 members of our community to raise their hands to form teams and stand with us on Day One of launch. I thought it was going to take two months to get the first 1,000 people, but we’ve signed on almost 1,000 in a couple of days. We’re allowing people to take part in their own cure, to have a voice in the battle.

People are sharing their own personal stories. These stories of courage, a fighting spirit, and a strong desire to make a difference are amazing. It reminds me every day that what we’re doing is important and right.