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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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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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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 www.smartpatients.com.

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 smartpatients.com 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 http://www.smartpatients.com/prostatecancer.

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 http://www.smartpatients.com, 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 http://www.clinicaltrials.gov, 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 http://www.clincialtrials.gov?

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 clinicaltrials.gov.

Is there anything else patients should know about http://www.smartpatients.com 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.