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Conversations With Prostate Cancer Experts


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Imaging Metastatic Prostate Cancer

Dr. Eric Rohren is the chair of the department of radiology at Baylor College of Medicine.

Prostatepedia spoke with him about imaging metastatic prostate cancer.

Subscribe to read Dr. Rohren’s comments on radium therapy + imaging. Members can read the interview in their March 2018 issue of Prostatepedia.

In terms of imaging, what kinds of scans can determine if a man has metastases (mets) anywhere in his body?

Dr. Eric Rohren: X-ray has been around for a long time and still has a role to play. It’s easy to obtain, it’s cheap, and it has low radiation exposure. We still rely on a good old-fashioned chest or bone X-ray, depending on the patient’s symptoms.

These days, most patients with any type of malignancy, and specifically prostate cancer, are managed in a couple of ways.

One way is a CAT scan. CAT scan is a 3-D imaging technique that uses X-rays that can take images of the body, chest, abdomen, and pelvis. Most patients with newly diagnosed prostate cancer or treated prostate carcinoma have undergone a CAT scan at some point in the course of their disease. CAT scans can show us the prostate gland, lymph nodes, liver, and many of the different organs where cancer may be hidden.

To supplement that, patients with prostate cancer often get a bone scan, which is a nuclear medicine technique. In a bone scan, we inject radioactive material that goes to the skeleton, and most strongly so in areas where there’s increased skeletal turnover, where something in the bone is inciting a reaction. It may go to benign things like healing fractures, arthritis, and various areas of injury. But the radioactive material also goes to areas of metastatic disease in the skeleton, and it localizes most particularly in those areas, lighting up on these bone scans.

Rather than just a particular region of the body, a bone scan shows us from the top of the head all the way down to the feet, which is nice. We get a look at the entire skeleton, and we can look for the little spots that are lighting up that may indicate the presence of metastatic disease in the skeleton.

CAT scans and bone scans are very widely used. A bone scan is a little bit better than a CAT scan in looking for these bone metastases, so the two really augment each other in detection of the disease.

Beyond these, we do have some newer imaging techniques coming into play. There’s a way of doing a bone scan with PET scanner. A PET scanner is another nuclear medicine technique that is more sensitive than a standard nuclear medicine camera, and it acquires a CAT scan at the same time. You can look at the images on the nuclear medicine technique overlaid on the CT scan to see where exactly the activity is and what it’s due to.

We can also use some agents with PET scanning to look at the skeleton. A so-called fluoride PET/CT bone scan seems to have many advantages over a conventional bone scan in terms of detecting smaller disease, more sites of disease, and things like that. MRI is also used in some cases.

Traditionally, MRI is used to evaluate specific areas, so if there’s pain in a particular area such as the skeleton,

MRI is a great way to do that. MRI is also used to look directly at the prostate gland and at the prostate bed after prostate surgery or after other therapy in the pelvis. It can be very good at detecting small volumes of disease. The problem with PET scanning and MRI scanning is that they are less accessible, although MRI is in most places now, and most major areas have access to a PET scanner.

Then there’s the issue of cost. Both techniques are costly. We need to determine if the added cost is justified by the additional information that those scans provide.

Beyond these techniques, the exciting thing for nuclear medicine is the new developments on the horizon. As we discover more about the molecular nature of disease, why cancer forms, and what makes and defines a cancer cell, those molecular discoveries can be translated into imaging studies that we can then use with PET scanning to be even more sensitive for detection of disease.

For example, there are several new molecular tracers in the United States that are approved for imaging of prostate cancer. Choline and Axumin (FACBC) are both agents approved in the United States for use with PET/CT.

Internationally, people are moving to a compound called prostate surface membrane antigen (PSMA) that can image prostate carcinoma. It seems to be even better than Choline or Axumin. The data is still a little bit undetermined at this point, but there’s a lot of excitement around these newer agents being able to seek out cancer in very small volumes anywhere it occurs in the body.

Then I guess the question becomes: when do you treat?

Dr. Rohren: Yes. That is very much the question. As we discover more and more sites of disease and smaller sites of disease, the question becomes: do we need to treat those aggressively or conservatively? We’re discovering new things about tumor biology, and we need to understand how that gets translated into the best appropriate therapy for patients.

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Cognitive Impairment + Prostate Cancer

Dr. Alicia Morgans is a medical oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, Illinois. She specializes in treating advanced prostate cancer and is particularly interested in addressing treatment side effects.

Prostatepedia spoke with her about cognitive impairment, stress, and prostate cancer treatment.

What role do you think medical oncologists traditionally play in anticipating that patients might have these kinds of struggles? What role do you think the medical oncologist should play?

Dr. Alicia Morgans: That is a tricky question. I think, in general, medical oncologists have a lot of things on their plates. They’re trying to balance all of the side effects of therapy, the reason for doing a particular therapy, the complications that a therapy can cause that are medically dangerous, as well as where we go next if this treatment fails. I don’t know that they always take the time to dig deeply into questions about cognitive function, depression, or anxiety unless those things are very clear because a patient is complaining about them himself or a caregiver says it is a huge issue.

Medical oncologists have very short patient visits, especially for followups, and have many things going on that they’re trying to work through with patients. These cognitive changes are not always at the top of their list. However, it’s a critical part of our job and something that I take the time to do because of both my personal experiences and the way that I think medical oncologists should practice. That is not to say anyone else is wrong, but it is a really important part of my practice. This is something that patients are living with day to day. It’s something that needs to be addressed and can negatively impact their quality of life.

A patient’s experience of his quality of life is what really matters at the end of the day. Length of life and quality of life, to me, are both critically important. If you are not thinking clearly or you’re severely depressed or anxious—about your job, financial toxicity, or dying— you can’t live your best life. Helping optimize quality of life during treatment for cancer is a pivotal part of what we do. That being said, I don’t criticize any of my colleagues for missing discussions on this or myself when I’m having a day and running an hour and a half late, but it is something we should strive to do.

Are there ways to circumvent problems with cognitive function, or is it just a matter of identifying them early on and getting patients the help they need?

Dr. Morgans: I don’t know if there’s necessarily a way to completely avoid them, but we might, with some of the research being done, identify patient populations or individual patients who might be most susceptible to some of these side effects based on their genetics or based on the way they metabolize certain drugs.

If we can identify who may be most sensitive, we might be able to steer those men away from certain treatments and toward other treatments or delay treatment if that’s in their best interest and is a clinically reasonable choice.

Our goal is to provide men with a balance of best quality of life and longest length of life.

What we can do now is ask questions of our patients to diagnose these issues. We can ask, “How’s your mood? Are you feeling depressed? Are you feeling down?” We can figure out if they’re depressed or anxious.

If we talk to men and their caregivers about their daily life, we can treat these problems whether it is through pharmacologic therapy or counseling with a social worker, a psychologist, or a psychiatrist.

We can treat depression and anxiety.

Loss in cognitive function is a little more challenging. I have referred patients to behavioral or cognitive therapy (similar to what is recommended for patients post-stroke) to give them strategies for dealing with memory loss or thinking problems. I’ve had some success with that approach, but I would say the standard approach to managing cognitive decline is still being defined. This is the work that I am trying to do, because we still need to confirm which tools are best for measuring cognitive change, and then we need methods to prevent or reverse these issues.

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Prostate Cancer + Sexuality

Dr. Daniela Wittmann, an Assistant Professor in the University of Michigan’s Department of Urology, is a psychotherapist, educator, and researcher particularly interested in developing and testing interventions that support couples’ sexual recovery after cancer.

Prostatepedia spoke with her about the issues men with prostate cancer and their loved ones face.

Subscribe to read this month’s conversations on stress, depression, and prostate cancer.

How did you come to work with cancer survivors?

Dr. Daniela Wittmann: About 35 years ago, I became a pediatric oncology social worker. That really formed my career, because I felt it was such important work. I liked working with cancer patients. I was working with people facing a significant crisis in their lives. There are many families applying their strengths to a challenging life situation and mastering it. It was very inspiring.

About 10 years ago, there was an opening in the Department of Urology at the University of Michigan. They wanted to open a prostate cancer survivorship program and they were looking for a sex therapist. I thought that would be a fascinating area to work in. I applied for and got the job and trained as a sex therapist. The rest is history. It became a passion. I now have a passion for sexual health in cancer.

Are there some issues that cancer patients face that are unique?

Dr. Wittmann: Yes. There is loss and grief. When you’re diagnosed with cancer, you worry about survival. You also worry about quality of life and what you might lose as a result of cancer treatment. That is the first issue every cancer patient faces.

The other issue that everybody faces is the impact on your family. Part of the quality of life is sexual health. I’ve learned that this is not just an issue for prostate cancer patients but for all cancer patients affected by cancer treatment in that area.

Are there some issues that breast and prostate cancer patients face that other cancer patients do not?

Dr. Wittmann: Yes. For most men, prostate cancer is a highly survivable disease. Quality of life becomes a huge topic.

Not so long ago, we analyzed long-term survivorship data in Michigan and found that the three top issues concerning prostate cancer patients were: fear of recurrence, the impact on their families and partners; and the management of long-term side effects. Of those long-term side effects, sexual function was the most problematic.

Do you think that caregiver issues come up more in the prostate cancer world than in other cancers?

Dr. Wittmann: No, they are fairly similar and come up in the same way.

The complication for prostate cancer patients is that the role of the cancer caregiver intersects with the role of a sexual partner. Sometimes, it’s difficult for caregivers to navigate this complex role. For the most part, partners really don’t have anyone to talk to about this. It’s an intimate area of life. People don’t necessarily talk to their friends and relatives about it.

Providers, generally speaking, don’t address it. It becomes an area of sorrow, sadness, and helplessness for partners. Although many partners are good at problem solving and many couples work it out, there are also many who don’t find a solution.

How do you work with prostate cancer patients and caregivers?

Dr. Wittmann: At the University of Michigan our program is designed to address both men and their partners. You can’t really address the men alone because their partners are very involved. Men want them to be involved; the partners want to be involved.

We start with a preoperative education where men who are about to be treated for prostate cancer and their partners come in for a two-hour seminar. Our multidisciplinary team presents information about surgery outcomes, side effects, and rehabilitation. We have a discussion at the end. We have anywhere between 15-25 couples and some single men in the audience.

After surgery, the men and their partners are invited to talk with a nurse practitioner. They get a physical and an evaluation of their functional recovery. Then they talk to me about the support that they need to maintain sexual intimacy as they’re recovering erectile function.

Some are followed on an as-needed basis. Others are followed every few months.

It is really difficult for men and couples to gauge if their own recovery is typical. We can give them some perspective and problem solve together. A small proportion of men asked for more intensive follow-up. Some have preexisting issues either in the emotional or sexual relationship that I can address with sex therapy. A few men are followed individually.

Do you have any thoughts or any advice for men who don’t have access to a program like this?

Dr. Wittmann: Yes. There are some resources that are potentially helpful. The American Association of Sexuality Educators, Counselors, and Therapists is an organization of people trained as sex therapists. They list good sex therapists on their website with a map of the United States. You can click on it and find a sex therapist in your local area.

Malecare has resources for heterosexual and homosexual men with prostate cancer.

If you’re in a cancer center, there may be a social worker who can work with you, or a nurse who has some knowledge about sexual health. Many nurse practitioners are quite well versed.

Any last thoughts for patients?

Dr. Wittmann: People can sometimes get very upset, sad, anxious, and even depressed about these issues, so finding a mental health provider in your area can really help. Some can also help solve problems with sexual health or find qualified providers who can, so definitely reach out.

Don’t feel that this is something you should solve on your own. There are resources out there. If your immediate physician, nurse, or nurse practitioner doesn’t know them, maybe a mental health provider will. Then, go online to find the resources that I just mentioned; these are good, vetted resources.

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Fear + Prostate Cancer

Ms. Nina Priebe is a social worker at the Cedars-Sinai Cancer Center in Los Angeles, California. She works with prostate cancer patients and their caregivers to manage some of the emotions sparked by the cancer journey.

Prostatepedia spoke with her about stress, depression, and prostate cancer.

Are there common themes that come up in your work with cancer patients? Are some specific to prostate cancer?

Ms. Nina Priebe: All cancer patients deal with the shock and disbelief of their diagnosis. They also go through feelings of lack of control, identity issues, sometimes role changes, changes in their family, and changes in communication.

Many things in their lives often have to be rearranged in terms of priorities. Side effects can have all kinds of impacts, both on emotions and psychological body image.

Many people have kind of an existential crisis: What does this mean? How did this happen? Why did this happen to me now? They’re meaning-making. They’re trying to make meaning of what happened. The caregiver experience parallels it in many ways.

In prostate cancer, men experience issues related to erectile dysfunction and incontinence. Some experience mood swings from the treatment. They may cry for no apparent reason whereas, in the past, they may have had a good sense of control over their emotions. That’s confusing and can be very overwhelming.

How does the caregiver experience parallel some of the issues that prostate cancer patients may find themselves facing that, say, caregivers of pancreatic cancer might not?

Ms. Priebe: A caregiver is anyone who helps. That help can range from practical kinds of help to emotional support. But the caregiver is also shocked by the diagnosis. Sometimes there were no symptoms. It was just a check-up. They too can have some denial or just some shocking disbelief.

Caregivers should be part of the treatment team. Because they’re not the patient, sometimes they put aside their own needs, which isn’t good in the long run. Some of them have their own medical problems, or they have the demands of elderly parents, young children, or special needs children, and the changing roles that may occur.

A typical change is that a man who always took care of the finances does not have time now because he’s in treatment or doesn’t have the energy. Role changes may occur and then change back again, but the caregiver balances his or her own work with caregiving.

Some issues that come up for prostate cancer patients and caregivers are related to stress and fear.

What role do you think fear plays?

Ms. Priebe: Fear changes, depending on the process. At the time of diagnosis, depending on the man’s history, fear can play a large role. My fiancé’s father had died of prostate cancer, so he was initially very fearful of death.

After that, the primary focus of his fears related to impotence. But my focus as a caregiver was on his survival.

You’re gathering information, going for second and even third opinions. I think the fear can be about making the right treatment decisions. Sometimes you have two and three differing opinions about what to do.

After treatment, there are fears about recovery for both the patient and the caregiver. Following that, people fear the cancer will come back. And then there is the anxiety around scans and blood tests every year or every six months.

Do you think the fact that there’s a fair amount of controversy over how to best treat prostate cancer adds to that sense of fear?

Ms. Priebe: Absolutely. In his case, my fiancé regrets his decision, but that’s because he had some adverse effects some years later. We see in hindsight. We didn’t know. He made the best decision he could at the time given what we knew.

What do you say to men and their caregivers? Do you have any advice about coping strategies or ways to deal with these emotions?

Ms. Priebe: As much as both of them can, I strongly advise them to maintain some part of a routine in their lives. I tell them to practice relaxation, which means different things for different people. There are all kinds of relaxation techniques, including hypnotherapy. But distraction, inducing relaxation as much as possible, and keeping some part of a routine are most important.

I have lots of patients who’ve gotten into adult coloring books. I have people that use guided imagery, which many of us use here at the Cedars-Sinai Cancer Center. Those kinds of things are very important.

What about support groups? Do you find them useful for men and caregivers?

Ms. Priebe: Some men who don’t have a good support system find it really useful. It varies. We have them, but many men just want to go on with their lives and they don’t want to focus on what they’ve been through with a group.

What about caregiver support groups?

Ms. Priebe: I think they end up being useful. People think that when they join a support group, they have to stay indefinitely. Sometimes, it might just be a certain stressful time in the process. Finding out that their feelings are normal—that other people have felt that way—can just be the reassurance needed to feel that they’re really okay.

What should patients and caregivers be aware of as they go into treatment or monitor themselves for recurrence?

Ms. Priebe: Being as generous with yourself as possible and allowing yourself to mourn are important. Until you mourn, you can’t go on to see: What did this bring to my life that might be positive? Have I now decided that different things are important to me? Whether something as simple as getting up and watching the sunrise or as complicated as a relationship that needed some repair, allowing yourself to mourn is the first step in being able to improve, adjust, and accept whatever has occurred.

You can’t really deal with anything until you acknowledge that you’re mourning.

Ms. Priebe: That’s right. You lost something. You grieve.


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Talking To Your Doctor About Side Effects

Dr. Alicia Morgans is a medical oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, Illinois. She specializes in treating advanced prostate cancer and is particularly interested in addressing treatment side effects.

Prostatepedia spoke with her about cognitive impairment, stress, and prostate cancer treatment.

Have you had any patients whose stories have impacted how you approach patient care or how you think about your role?

Dr. Alicia Morgans: The most poignant in my mind right now is my grandfather who recently passed away from advanced prostate cancer. I know we have spoken about him before. His passing really brought home to me how important it is to have a good medical oncologist, and how privileged we are as medical oncologists to share in this journey with our patients and their families. He was diagnosed at a late age with prostate cancer, but throughout his entire life, he had been averse to doctors and medical care. It was challenging for our family, and for me in particular, because by that time, I was already a prostate cancer specialist. We tried to help him understand that his doctors made recommendations to help him.

During his entire treatment history, I really felt very strongly and personally how important it is to balance quality of life with length of life for men with prostate cancer and their families. Living longer doesn’t mean living better for a lot of people. It’s really important for physicians to recognize that we can’t put our own beliefs about what is most important onto someone else. We have to listen to our patients so that we hear what is most important to them. That is the thing that is most clear in my mind right now.

As my grandfather approached the end of his life, we had to make difficult decisions for him that walked a fine line between length of life and quality of life. He made decisions that some people may not make. He chose not to undergo further therapy at a certain point, even though those therapies existed, because it didn’t make sense for him given his goals and preferences. That is what I think about as being most impactful when I meet with patients.

Do you think patients are often reluctant to have those kinds of conversations with their doctors?

Dr. Morgans: Absolutely. Those are not easy conversations to have. I would say that we were lucky in my grandfather’s situation. We were lucky because I’m persistent and just kept pushing him to speak his mind and let us know what was important to him. In many conversations with patients, I find it’s really important to wait and just be quiet. Let some space fill the room so that men who may be reluctant can take that next step and answer.

As physicians, many of us are so pressed for time that we are almost pressured in the way that we ask those kinds of questions. Just letting some space sit in the room can give men an opportunity to speak. The other thing that is important to do for men with prostate cancer is engage with their caregivers and loved ones, as long as the patients feel comfortable with this interaction. Sometimes caregivers will share things that men themselves don’t feel comfortable sharing. But once it’s out, the men can open up. They feel able to continue that conversation.

I guess some patients might not know how they feel or might have a difficult time expressing how they’re feeling.

Dr. Morgans: Absolutely. No one wants to feel weak. No one wants to admit that he’s not feeling like he did 10 years ago. Optimism is a huge part of feeling well too, and for some, admitting that we don’t feel as well as we did before can stand in the way of optimism.

I think it’s important for us as physicians and as caregivers to make it clear to people that it’s okay to express those feelings. A lot of times we have ways of making those symptoms better. If you’re able to express it, maybe there’s something we can do about it.

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Anxiety, Depression + Prostate Cancer

Mr. Chuck Strand is the CEO of Us TOO International Prostate Cancer Education and Support Network. He discusses the anxiety and depression often associated with prostate cancer.

A cancer diagnosis of any type triggers a wide range of initial reactions and emotions. While in some instances it might provide a sense of resolution, a more typical response may include sadness, loss, fear, guilt, stigmatization, embarrassment, anger, or disappointment.

Many aspects of living with a prostate cancer diagnosis can be sources of anxiety and depression— everything from anticipating the next PSA (prostate-specific antigen) blood test results to dealing with the post-treatment impact of common side effects like incontinence and erectile dysfunction (ED).

Unfortunately, men and their partners are not always fully informed about the likely side effects when selecting a treatment. In addition to managing the anxiety resulting from ED and/ or incontinence, an unexpected decrease in a man’s sexual virility can lead to a sense of betrayal or reduced trust in his medical provider or in the medical community in general. Recognizing and learning to cope with anxiety and depression can be critically important for effectively managing life with prostate cancer.

In a recent collaborative survey conducted by Us TOO International and CancerCare, 94 percent of men who were diagnosed with prostate cancer indicated that experiencing anxiety and/or depression is to be expected. Anxiety and depression can interfere with a person’s day-today activities, responsibilities, and relationships and can impact not only the person with cancer, but also the caregiver. Helping family members manage their distress may have a beneficial effect on the distress level of the person with cancer.

The stress and anxiety associated with a prostate cancer diagnosis can be significant enough to influence a man on active surveillance to opt for treatment earlier than necessary, resulting in what is often referred to as over-treatment.

Treatment decisions must address whatever aspect of disease management is a priority for each man, after he has sufficient information on all treatment options, possible or probable side effects, and management of side effects.

One man’s priority could be to do everything he can to minimize the possibility that prostate cancer will metastasize, while another man’s priority could be to do everything possible to maintain and maximize his quality of life. It is important for a man to recognize that once diagnosed with prostate cancer, the disease will unfortunately be a perpetual issue of concern and a potential source of anxiety due to ongoing monitoring of PSA test results at a minimum, regardless of the course of action he takes. While active surveillance can be emotionally exhausting, over-treatment can result in decreased quality of life with ED, incontinence, and the potential emotional and psychological impact of having second thoughts about his treatment choice.

Symptoms of Anxiety and Depression

Anxiety and depression not only affect the quality of a man’s life, but can also keep the body’s immune system from functioning at its full capacity. Additionally, it can have a negative impact on adherence to treatment regimens. Therefore, it’s important to recognize these conditions and attempt to address them accordingly.

Anxiety is a feeling of nervousness, fear, apprehension, and worrying—typically about an imminent event or something with an uncertain outcome. Symptoms include: feelings of fatigue or weakness, sweating (for no reason), chest pains, headaches, gastrointestinal problems, or inability to rest.

Depression is a feeling of severe despondency and dejection. Symptoms include: sleeping more or less (as compared with regular sleeping habits), loss of interest in daily activities, an unusual increase or decrease in energy, changes in appetite (eating either more or less as compared with regular eating habits), increased irritability or impatience, or difficulty concentrating.

Action Items to Help

Take action rather than passively accepting anxiety and depression as a given. Begin by acknowledging the very real relationship between anxiety, depression, and prostate cancer. Take stock of your own emotions. Talk to your doctor about your concerns. Make sure your diet is heart-healthy/prostate-healthy. Exercise even if you do not feel like it. Especially if you do not feel like it! Exercise releases endorphins and neurotransmitters that promote relaxation and eliminate excess cortisol, a hormone released during stress and associated with anxiety. Get mindful and try to incorporate yoga, meditation, acupuncture, or other holistic practices into your life. These lift the body, mind, and spirit. Try to keep a positive attitude when possible, but understand that ups and downs are normal and expected during prostate cancer treatment.

If appropriate, your doctor might be able to provide a referral to a counselor who can help. Some common techniques to effectively manage anxiety include talk therapy (especially Cognitive Behavioral Therapy [CBT]) and antianxiety medications. Depression can be managed though lifestyle changes to establish more connections and support, psychotherapy (including Cognitive Behavioral Therapy), pharmacological treatment and, in advanced situations, Electroconvulsive Therapy (ECT).

Reach Out!

If you are dealing with prostate cancer and experiencing anxiety and/or depression, know that you’re not alone. Educational resources and support services are available to help cope with anxiety and/or depression.

Many men with prostate cancer and their wives/partners have dealt with anxiety and depression. It can be helpful to attend an Us TOO prostate cancer support group to share experiences and gather information and strength from those who have successfully managed these challenges.

To find an Us TOO prostate cancer support group near you, visit www.ustoo.org/Support-Group-Near-You, call 800-808-7866, or email ustoo@ustoo.org.

To join a prostate cancer support group via telephone, visit www.ancan.org/support-calls.

For individual counseling on anxiety or depression by telephone and online group counseling, contact CancerCare at 800-813-4673 or www.cancercare.org.


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Living A Normal Life After Prostate Cancer

Dr. Stephen Freedland is a urologist at Cedars-Sinai in Los Angeles, California and the Director of the Center for Integrated Research in Cancer and Lifestyle, Co-director of the Cancer Genetics and Prevention Program and Associate Director for Faculty Development at the Samuel Oschin Comprehensive Cancer Institute.

Dr. Freedland treats the whole patient and not just a man’s prostate cancer.

He frames this month’s conversations about stress, depression, and prostate cancer.

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Historically, the goal was to cure cancer. We don’t really cure other major medical problems like heart disease, diabetes, high blood pressure, or high cholesterol: we manage them. Cancer, in general, and prostate cancer, in particular, are becoming chronic diseases. Occasionally, we need to do something more aggressive, but we really just need a management strategy so that people can live normal, healthy lives even after being diagnosed with cancer.

With this shift from quantity of life to quality of life comes an opportunity for us to have conversations about how prostate cancer and its treatments affect daily life. People are now younger at diagnosis than ever before. They’re still active. They’re still working. They’re still productive members of their families and of society.

How do we help them maintain that while providing the best cancer care? The challenge is how to marry those two. It’s not enough to focus on Gleason score, PSA, and stage. The focus is on the patient. On the person. It’s not just about the numbers.

I applaud Prostatepedia for delving into this subject matter with some very engaging conversations with some of the world leaders on the topic. I work very closely with Dr. Arash Asher at Cedars-Sinai Medical Center. We focus now on nutrition, exercise, and psychosocial health. It’s really spectacular to see. Men are able to maintain much of their quality of life and sometimes feel better than ever.

At the same time, we’re realizing that what works for one patient will not necessarily work for another. There is no shortcut to sitting down with a patient, understanding his needs, goals, and desires, and then working together to come up with a care plan that manages his cancer and his side effects. We want to keep you psychologically strong and able to fight your cancer–but also to live your lives.

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Prostate Cancer Vaccines

Dr. Douglas McNeel is a Professor in the Department of Medicine at the University of Wisconsin-Madison and Director of Solid Tumor Immunology Research within the UW Carbone Cancer Center. Dr. McNeel focuses on prostate immunology and the development of antitumor vaccines as a form of prostate cancer treatment.

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Can you give us an overview of vaccines for prostate cancer: which are available now and which are still in development?

Dr. McNeel: If a person has prostate cancer, he usually has surgery or radiation therapy to remove the cancer. These initial therapies cure a majority of patients, but about a third of the time, the disease comes back or resurfaces. We can usually detect the recurrence at a very early stage with a PSA blood test.

Our original thought was that the point of recurrence is the time to intervene, to create a tissue-rejection response.

You can’t really do without a normal kidney. The same is true of the liver.

But you can do fine without a prostate. So if we can create a rejection response to remove any prostate tissue, whether it’s cancer or not, that would be okay.

That was our original thought. The idea with vaccines is to teach the host to generate an immune response that will recognize and destroy cancer cells. But this is a challenge to treat existing tumors with vaccines. With infectious disease vaccines—what we normally think of when we talk about vaccines—we get an immune response that then protects you later on. We call them prophylactic vaccines. But we don’t treat active infections with vaccines. We treat them with therapies that target the bug directly or infuse in an immune system like an adoptive therapy approach.

With cancer, we see the same kinds of hurdles. What we know from animal models is that there are a number of cancer vaccines that can protect animals from cancer, but to get the best response against existing cancers, you have to start when tumors are small and barely detectable. That has been a challenge in pushing those vaccines into human trials.

We’re also learning that when you generate an immune response by means of a vaccination, the cancer can put up a big barrier very quickly to fight against it. Our thought process on vaccines is currently in the midst of changing given that kind of information.

A number of cancer vaccines have been studied over the years. Most of the effort has not produced anything, because we have been looking at vaccines alone, usually in patients with more advanced cancers.

There has been one exception. Provenge (sipuleucel-T), which is a vaccine targeting a protein called prostatic acid phosphatase, was approved in 2010. In this approach, patients have blood removed and their antigen presenting cells are spun out. Then the target of the vaccine, this prostatic acid phosphatase protein fused to an immune-modulating drug, is put together in the lab in the culture dish. The education of the immune system akes place in the lab, if you will. Those cells are then shipped back and infused back into the patient two or three days later. That process is cumbersome, but the approach was shown to be effective.

One large trial led to its FDA-approval. But there were other supportive Phase III trials showing that people who got the vaccine versus those who got a placebo vaccine did better and lived longer. It was a challenge rolling out Provenge (sipuleucel-T) because we don’t see PSA declines with it. We also don’t see changes in the tumors on scans, but we know that men with advanced prostate cancer, in general, live longer if they get that treatment.

Prostvac is an approach that has been in Phase III trials up until recently. Unfortunately, the Phase III trial was deemed to not have met its primary endpoint in September 2017. It did not show that people lived longer. It’s unclear if Prostvac will be developed or not.

Prostvac is a viral vaccine. There is one virus that encodes PSA and then a separate virus. People are immunized with one virus coding the PSA and then boosted with the separate virus. The idea is to use viral vaccines to focus the immune response on the target protein PSA.

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Women + Movember

Heather Mott is one of the Movember Foundation’s top fundraisers.

Prostatepedia spoke with her about raising money for men’s health.

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How did you become involved with Movember?

Ms. Mott: This is my sixth year participating as a Mo Sista and raising funds for the cause. I don’t remember exactly how I heard about it, but I think it was through social media. It sounded interesting and fun and it benefits men’s health, so I started doing it.

When I started, Movember was more focused on prostate and testicular cancers, but now they’ve branched out into mental health awareness and healthy lifestyle activities.

How can a woman participate?

Ms. Mott: It is easy to get involved – all you have to do is sign up on their website. I try to do a different photo every day of the month. Since I am genetically-challenged to grow my own mustache, I usually order fake moustaches and take some selfies. Sometimes friends help me.

I’ve tried doing themes with some common factor across the different photos. For example, my theme for this year’s Movember campaign is photos of individuals in a role that serves the community. Today, I posted a photo with a Navy backdrop, thanking all those who serve or have served in the Navy. I’ve posted backgrounds with other public servants like teachers, those in the justice system, or first responders.

What kind of themes have you used in the past?

Ms. Mott: One year I had the different individuals from the Village People who sing the YMCA song. I had a cop, a construction worker, and all that. There hasn’t been a real rhyme or reason to the themes, just whatever strikes me that year.

How do you get people to join your team?

Ms. Mott: When I started, I didn’t join a team. Then the next year my company, Johnson & Johnson (I’m at the Los Angeles Neutrogena facility) started a team. I joined them and this is our fifth year. We have new people each year and some reoccurring partners. We do a lot of recruiting onsite and there is some friendly competition. We have all kinds of events over the course of the month.

Has your involvement in Movember had an impact on your community?

I started with Movember because I thought it was an interesting way to raise awareness and help fund research. Then, about three years ago, my father was diagnosed with prostate cancer. Thanks in part to Movember awareness, he caught it so early that he was able to do active monitoring for a year. There wasn’t enough cancer to treat.

Last year, he went through treatment. Because he caught it so early, he went through a program called CyberKnife. He has had hardly any side effects, no pain, nausea, nothing that people tend to associate with cancer treatment.

My involvement in Movember impacted me personally and made a big difference in my father’s life.

Would he have waited to be screened if you hadn’t been involved with Movember?

Ms. Mott: He’s been a pretty healthy and health-conscious individual throughout his life, so he is pretty diligent about getting his annual checkups. Once he got to a certain age and was a little bit more aware, it definitely helped him. It helped him network, understand treatment options, and talk to others about it. I know that that’s something Movember is big on, raising awareness. There are networks out there to help you when you find out you have cancer. He was nervous at first, so it definitely helped him get through all of it. It helped him be conscious that it’s important to get these checkups, especially at a certain age.

Does he participate in Movember along with you?

Ms. Mott: He is a very active supporter, but he doesn’t have his own Mo Space or anything like that.

You should set him up.

Ms. Mott: [laughs] I know. He’s always had facial hair.

He was already growing the moustache?

Ms. Mott: Yes. He was growing long before.

Do you have any thoughts for men or women who want to fundraise for Movember?

Ms. Mott: I would love to see even more Mo Sistas, because we all have men we love in our lives. I became aware of Movember through social media, so I’m always posting through my social media platforms.

But I’ve also done some bake sales at a community brewery and I worked with local businesses to get the word out.

Is it worth trying to get your company or place of work to organize a team?

Ms. Mott: Yes. I work at a large company, so a lot of individuals here care about health. That has made it easier for us to have a team each year.

Last year, our goal was to raise $10,000; we raised about $13,750. It does help partially that I work with a large company, but this is something anybody can get behind.

We all know at least one man who’s at least had a scare, right?

Ms. Mott: Yes.

Does your team have events throughout the month, or is it mainly just about getting together and raising as much money as you can?

Ms. Mott: We have events. I’m co-leading our team here onsite this year. We have a Shave Off kick-off each year where all of the guys signed up come, and since we make men’s care products, they do a shave off together.

We then host different fundraising activities. This year we have a lot of healthy activity initiatives at Johnson & Johnson. We’re doing some yoga and a Ping-Pong competition. People can buy-in to donate to the team; there will be some prizes at the end of the tournament.

We do different activities each year to keep it fun, engaging, and to generate funds. Johnson & Johnson has a culture of supporting these types activities and there are other ways for companies to help. Companies often match donations.

Any last thoughts for men who might want to participate?

Ms. Mott: It’s so easy to sign up and get involved. It’s such a fun activity. Movember is a very engaging group. Their United States headquarters is in Culver City, CA—right next to us.

It’s a great way for men to touch base in a less formal environment, and it definitely builds a network, so that should you get diagnosed, you have others who understand, can offer support, and who have maybe been through it themselves.

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Patients Speak: Choosing Focal Therapy

Mr. David Fitch talks to Prostatepedia about choosing focal therapy for prostate cancer.

Join us to read our November issue on focal therapy.

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What was your life like before prostate cancer?

Mr. David Fitch: I live by myself. I’m 74. I’m retired. Ever since I quit working, I found it is a lot better to interact with my friends. I bicycle and swim. I’m more of a cyclist than a swimmer. I cycle almost every day. I’m probably riding 200 to 300 miles a week. I started doing that initially for the social part of it—all my friends are bicycle folks.

Then I got into the VA Palo Alto swimming pool a few years ago and so I’ve got a lot of VA pals as well. All my exercise basically started as more of a social thing. That’s what was happening before the diagnosis of prostate cancer.

How did you find out that you had prostate cancer?

Mr. Fitch: That was through the VA. The VA in Palo Alto, California, is really good. I’ve been going there for over 10 years. I found out through my endocrinologist. I can’t say enough nice things about her. She has literally saved my life at least twice and this was one of those times. She was looking at my PSA over the years. She said: “It’s gently rising. It doesn’t really rise to the threshold of being something to worry about.” It was around 2.5 for several years before rising to around 3.5 over a period of about four to five years. She said, “Would you like to go talk to the urology department?” I said, “Sure, I’m always happy to talk to people.” She sent me to the head of the urology department. I had no clue about what a urologist did. I went to see the guy, and he did a digital rectal exam (DRE) and said he could feel a lump. My previous DRE was 18 months earlier with my primary care physician and she said everything was fine.

The urologist sent me for an MRI— I had no idea what an MRI was. This started my research: What’s an MRI? With the MRI he said, “It looks to me like there’s something wrong, so I need to do a biopsy.” He told me that the protocol for the VA is a blind biopsy, not using the MRI, just poking 12 holes or so into my prostate and taking samples. Very hit-or-miss. My research indicated that using the MRI fused to a picture of my prostate gave the radiologist a better chance of seeing the suspicious areas to sample, but the VA doesn’t do that. There is a program, Veteran’s Choice, that allows patients to be sent outside the VA if a procedure cannot be performed within the VA. I was sent to Stanford for an MRI-ultrasound fusion biopsy. The Stanford radiologist, Dr. Sonn, found lesions on both sides of my prostate. The right side had more suspicious areas than the left. The pathologist’s report confirmed the presence of intermediate prostate cancer. On the right side were two areas: Gleason 4+3 and 3+4. On the left side, it was Gleason 3+4.

What was your reaction? How did you feel when you found this out?

Mr. Fitch: I was very concerned of course but not distraught. The VA Urology Department did not inform me of the difference between blind biopsy and directed biopsy or of the availability of the Veteran’s Choice Program until I asked. I was now suspicious: What else hadn’t I been told? The only solution was my own research. I went down this rabbit hole trying to answer: What is prostate cancer? What does it mean? What do all these numbers mean? Who can do what, and how do I go about finding out? I joined a support group at the VA Palo Alto, which was worthless. Then I went to two other local support groups, one in Los Gatos, and another at Mountain View—both of them pretty good.

I found out from talking to a lot of guys that doctors generally prescribe their own methods of taking care of this stuff, whether or not it fits. Urologists want to cut and radiologists want to radiate. Then I found an online support group, Inspire.com, a partner of Us TOO. It’s fairly comprehensive. You can get a lot of questions answered, and you can spend literally hundreds or thousands of hours digging through—it’s like trying to take a drink out of a fire hydrant.

I was willing to educate myself. I was looking for people who could help me educate myself to find out what needed to be done. The best way I can characterize this is the problem that I had didn’t seem to me to be life-threatening at the moment. It seemed to me like I had plenty of time to figure out what to do next, but I was going to have to do something.

I didn’t like the fact that the head of the VA Urology Department told me he could only offer me surgery or radiation—nothing else. I thought both of those things were like amputating my arm because I got a scratch. I told him that. I said, “You’re not helping me a whole lot.” I had a 20-minute appointment at most. He just seemed too busy to have any sort of a long conversation. I went in there with all this reference material, a ton of it. I didn’t exactly know where I wanted to go with it, but I wanted to have a conversation with the man. His bedside manner was terrible. He gave me 20 minutes and said, “Okay, well, do whatever you want.” I wasn’t getting anywhere.

At that point, I felt that the VA Urology Department was not very helpful. I began to realize that there is a huge difference in doctors’ expertise as far as prostate cancer was concerned. I realized that I had to take this into my own hands. I had to educate myself in order to be able to go forward: What is a urologist? A radiologist? An oncologist? Do they specialize in prostate cancer?

Later, after my focal laser ablation (FLA) procedure, I met Dr. John Leppert, a VA urologist who has been very helpful and supportive in my quest to understand prostate cancer.

Did you turn to the online groups? Is that where you went first for education?

Mr. Fitch: I started online, yes. I did a lot of reading. I just worked for a long time until I had the answers that I wanted. Additionally, I began to hear the names of certain doctors mentioned over and over again: Dr. Snuffy Myers, Dr. Mark Scholz, Dr. Mark Moyad, Dr. Fabio Almeida, Dr. Dan Sperling, Dr. Pete Carroll, Dr. Joe Busch, and many others.

In many cases, Google was where my investigation began and I watched many YouTube videos. I concluded that many doctors want to cut something out of me or to radiate me, and both those things have serious consequences. I didn’t like either one.

It was about that time that I stumbled onto FLA. It probably had more to do with side effects than it did with whether it worked or not, quite frankly. I found that the biggest side effect from FLA was financial. It would cost me $20,000.

I decided not to buy a new car that year and use the money to take care f my body instead. I’m being a little facetious here. If it didn’t work, I could always do anything I wanted to the second time around. That’s what led me to FLA.

Once you found out about focal therapy as an option, how did you figure out which form of focal therapy was best?

Mr. Fitch: My FLA was done in 2016. There are more types of focal therapies now than in 2015 when I made the decision. Additionally, there are very few doctors who do this particular FLA. I went to Dr. Eric Walser at the University of Texas Medical Branch in Galveston, who I think I found out about on Inspire.com. Initially, I was going to Dr. John Feller at Desert Medical Imaging in Indian Wells, California. He had a clinical trial that I was eligible for, but I changed my mind at the last minute because Dr. Feller’s clinical trial would cost more than Dr. Walser’s commercial practice and would require two trips. And Dr. Feller uses an MRI machine that is 1.5 Tesla. I know it works just fine in the right hands, but it is not a 3.0 Tesla machine.

What was the actual procedure like for you?

Mr. Fitch: The procedure was outpatient. It lasted maybe an hour. I was never knocked out. It was just local anesthetic. I spent a few days in Galveston recovering. They did two overlapping ablations on the right side and one on the left. They took larger margins to preclude missing some hard-to-see cancerous spots. Prior to this time, FLA procedures had recurrence rate in the 10-15% range. Taking a little larger margin around the tumor would reduce the recurrence rate. And in my case, they ablated twice, overlapping, on the right and once on the left side. The tumor on the left side was rather small and hard to see. The two tumors on the right side were fairly close to the urethra, which meant that when my poor old prostate swelled up from the ablation, it closed off the urethra. Without a catheter in place, I wouldn’t have been able to pee.

The only painful part of the procedure was reinsertion of the catheter for the blocked urethra. I ended up staying in Galveston from Monday to Friday waiting for the urethra to open. I was told this problem was not typical and was probably due to the ablation near the urethra.

Any side effects after the treatment?

Mr. Fitch: My ejaculations are dry. I’m told that’s pretty typical. I’m 74 years old and not having kids is really not a problem for me. Otherwise, there don’t seem to be any aftereffects.

How are you monitoring now for potential recurrence after treatment?

Mr. Fitch: Active surveillance. The protocol is to have a PSA test every three months and an MRI at six months and 12 months. If everything is clean at the end of 12 months, then maybe an MRI once a year. It varies a little bit after that. The PSAs typically go on at three-month intervals. They’re just part of my normal blood work that I have done at the VA.

To put the PSA in perspective, before the FLA, it was about 3.5. Three months after FLA, it dropped to 2.3. Then at six months, it dropped to 0.25. I was so surprised by that number that I had it confirmed with a second test a few days later. It was 0.28.

At nine months, it jumped back to 0.55. That could have been partly due to riding my bike a lot. That does have an impact on PSA. At one year post-FLA, it is 0.43. I’ve had a one-year MRI as well which shows some scarring but no other problems.

Do you have any advice for men who are in a similar situation?

Mr. Fitch: I would do it again for intermediate prostate cancer (i.e., Gleason 7) which has not metastasized. It’s expensive, not covered by insurance, and I had to travel, but it was well worth it. No pain, no leaking, and sex works. If the cancer reappears in the gland it can be re-ablated or any other procedure used. There are many available therapies for organ-contained prostate cancer that has not metastasized: cryotherapy, CyberKnife, MR-guided focused ultrasound, NanoKnife, proton beam, photodynamic therapy with TOOKAD, stereotactic body radiation therapy (SBRT), brachytherapy (seeds), and more. Technological improvements are happening quickly. I suspect we’re headed down the road of some new, permanent therapies that will eradicate prostate cancer forever. Immunotherapy comes to mind. Until then, FLA seems like a good interim measure.

Any other thoughts for other men struggling with prostate cancer?

Mr. Fitch: Listen to the doctors. If you like what they say, and if you want to follow their advice, that’s fine. If you think there might be something else out there that works better, at least take a look at other options and see how they stack up against what you’re being told. Prostate cancer probably hasn’t changed a heck of a lot in a long time, but the ways that we approach it are changing rapidly. Active surveillance for low-risk cancer (Gleason 6) is increasing dramatically, and scanning techniques make this possible. If it weren’t for the new technologies in scanning, we wouldn’t be doing focal anything. Scanning helps find the tumors. I was a fighter pilot. If somebody was shooting at me, I could combat that by seeing the threat and defeating it. The same goes here. If you can see it, you can probably defeat it.

There are a lot of scanning techniques including MRI. PET/CT scanning techniques use different imaging agents (injected during the scan) and can help to see both inside and outside the prostate. These agents include C 11-acetate, PSMA, Axumin (fluciclovine F 18), and many others. It’s worthwhile investigating those to make sure that a guy knows exactly what he’s got and exactly what he has to deal with before he goes down any road. He’s got lots of time, especially if it’s low or intermediate risk. Take the time to educate yourself, to understand what needs to be done.

The last point I’d make is to attend the Prostate Cancer Research Institute (PCRI) conferences in the fall. It’s designed for patients, given by world class doctors, lasts three days for $50 or so. The education is remarkable.

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