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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Patients Speak: Anxiety, Depression + Prostate Cancer

Roger G. is an Australian man with prostate cancer.

He spoke with Prostatepedia about how he dealt with anxiety and depression during his prostate cancer journey.

How did you find out that you had prostate cancer?

Roger: My general practitioner had been checking my PSA since 1999. I’d had some issues with urination. He wasn’t too concerned because my PSA hadn’t changed much. In 2003 it had risen to 3.8. In 2004, he said I should get another PSA test but said to leave it until early December, which I did. By that time it was up to 5.6. He referred me to a urologist who said, “We’ll do a biopsy. No hurry. Come back after Christmas.”

I went back to see him in January. The cancer looked pretty well contained. My Gleason score was 3+4=7. He said we’d have to operate, but there was no rush. At that stage, I was a little bit anxious about it all. I thought: Here we go. Just my luck to have cancer, but let’s get on with it. The urologist said, “If it has spread, which I don’t think it has, you can go on hormone treatments. Lots of people get 12 more years with that. Don’t worry.”

I had the bone scan to check if it had spread. Nothing was found in my bones. I had them book me for surgery as soon as they could. The surgery went well. Three months later, I went back to see him. My PSA was 4. He said, “Surgery failed.”

A week later I had another PSA test. It was 5. I started to feel a little bit anxious, but he told me not to worry. He sent me off for a PET scan, which took a little bit of organizing. This was back in 2005 when the PET scan machines were new. They didn’t even know which PET scan to give me. I now know that the PET scans I had were part of a study to determine which was best for prostate cancer. I had one scan and then another. It lit me up like a Christmas tree. There were three big red dots well apart and away from where my prostate was. I was pretty anxious about it all.

How did you deal with that feeling of anxiety?

Roger: I asked, “How long have I got?” They estimated two to five years. I asked about surgery? “No,” they said, “That’s like weeding a garden.” What about radiation? They said they’d have to burn my guts out. I asked what to do. They just told me to “Keep fit and come back in three months.” I was 59. My experience with cancer in my family was pretty grim. My dad was diagnosed with cancer and died three weeks later. It wasn’t prostate cancer, though. My aunt died from lung cancer.

One of my sisters said it was breast cancer, but I didn’t know that at the time. She died pretty soon after her diagnosis. My dad’s brother was 72 when he told us he had lung cancer on Boxing Day in 1995. He was dead by Easter. I was a mess. I would see healthy people and say to myself, “How come you are okay and I have only a few years?” The black dog was giving me a hard time.

But that’s when I organized myself to see the psychologist at the hospital. I had a breakdown. I saw her every week and just talked about how things were going.

She suggested I obtain the Guided Mindfulness Meditation CDs by Jon Kabat-Zinn and start with body scan meditations. I bought the discs. These helped a quite a lot, and I felt as though I was doing something to cure the cancer.

Then, by chance, I went to a support group meeting in one of the Melbourne suburbs—pure chance. I couldn’t find anybody at the meeting who was in the same boat as me. Everybody I met had either had surgery and was all clear, or they were just waiting and watching. But also at that meeting was a motivational speaker. He was fantastic. He talked about how it was mind over matter and about self-talk. He mentioned Lance Armstrong’s book: It’s Not About The Bike.

It’s about turning things around with this self-talk stuff. It all gets to you. I’ve only got a few years to live. I want to really enjoy the rest of my life. Now, I say to myself, “You’re going to be okay.”

Anxiety had me looking at the dark side. Everything on the TV was death. It wouldn’t matter what it was. It was all death to me. It was all why me? A good friend invited me around to his place for a drink and we enjoyed a bottle of red wine. For the first time in two months my nerves settled, and I knew that I could put the black dog in his kennel. Things took a dramatic turn. My boss, who was very understanding, told me of his brush with cancer and how he was given the all clear.

A work colleague told me about his 80-year-old father who had been told he only had a year to live when he was 40. When I took my first PSA test in 3 months, my general practitioner said it might be down. And it was: 3.4!

Cancer is tough. I’m sure most people wonder why me at some point.

Roger: I went through a period when I had a tough time. I was on a hormone-suppressing drug when my PSA went back up to about 20. I got a little bit depressed once

I started on that. I went back to the meditation tapes. There were other issues, too, with loss of libido and putting on a bit of weight. I use the meditation CDs and selftalk. I keep myself fit. I do a good bit of resistance training and stretching.

In June 2016 I had another serious mental breakdown. My general practitioner put me on a mood enhancing drug. Now I’m feeling terrific and energized.

And you lead a support group, don’t you?

Roger: I’m the secretary there. That keeps me busy. I play golf three days a week. I walk around the golf course, dragging my clubs around behind me. Even though I was depressed, I still played golf and worked out at the gym.

Do you have any advice for other men facing similar circumstances?

Roger: Prostate cancer is a chronic disease. If you get a black mood, use self-talk. Talk to yourself inside your ear: “You won’t have any symptoms. They don’t happen. If you do get a bit of pain, well, you can just let them do a bit of radiation.”

You’ve got to keep in touch with your oncologist, just to see if you are eligible for one of the new effective treatments. Work out because your bones degrade when you’re on hormone treatments. Exercise is medicine. Get your heart beating and get your muscles working. This will give you a sense of control over your destiny.

If you are anxious or depressed, see your general practitioner. The medication my general practitioner prescribed sorted that out (and decreased the intensity of the hot flushes).

I enjoy my grandkids. Two of my daughters are married. I’ve got four grandkids. It makes me see the joy. I am really looking forward to all the joys of old age. I had a friend who is about 12 years older than me and he has dementia. I think prostate cancer is a better route.

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Meditation + Active Surveillance

Dr. David E. Victorson is a clinical psychologist and Associate Professor at Northwestern University’s Feinberg School of Medicine in Chicago, Illinois.

Prostatepedia spoke with him about a trial he’s running on mindfulness meditation and active surveillance for prostate cancer.

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Why did you become a clinical psychologist? How did you end up working with cancer patients?

Dr. David E. Victorson: My training was in clinical health psychology and behavioral medicine. A lot of my early training experiences were in cancer, and in some of those, I had the opportunity to work with men with prostate cancer and their spouses in a clinical capacity.

The reasons why I went into this area are multifaceted, but I would say one of the primary reasons is that there is so much that we can do with our own behaviors and lifestyle practices. There is so much good that we can do for our own health by ourselves without needing any heavy equipment or extreme intervention. A lot of times, it just takes a little nudge in a different direction to get people going on a path that will be incrementally better for them.

How do you usually work with patients?

Dr. Victorson: I don’t work with patients in a clinical therapeutic capacity today. I do 100% research. In 85-95% of our research studies, however, we deliver psychosocial and behavioral clinical interventions. Sometimes you might call them self-management interventions. A lot of them are prostate cancer-focused.

Usually, we involve spouses. We help men and their spouses learn skills that can support their health and well-being in different ways.

Most of those studies are group-based, bringing groups of men and their spouses together for classroom skills.

I’m sure that the skills you teach are useful beyond a cancer diagnosis.

Dr. Victorson: They are. A lot of the things we do are applicable across a whole range of different diseases and conditions. People who don’t have a disease can still benefit. But when you get a prostate cancer diagnosis, modifiable health behavior comes into the picture quickly in terms of diet and exercise.

What we’re trying to do with our meditation study is along the lines of mood management, which can be really important in the context of cancer. There’s nothing like a cancer diagnosis to motivate a person to make that kind of lifestyle change. I’ve heard that before, especially when it comes to exercise and prostate cancer.

Dr. Rob Newton told me that cancer patients tend to be more motivated than cardiovascular disease patients, for example. (See Prostatepedia December 2017.)

Dr. Victorson: Right.

What will you be doing in this particular trial? Why mindfulness education in an active surveillance population?

Dr. Victorson: We are comparing our eight-week mindfulness intervention with a matched attention control program. We anticipate that the attention control program is also going to lead to positive health changes, but we hypothesize it will be different than the mindfulness program.

This is a blinded trial, and men and their partners won’t know what group they’ll be put into outside of the fact that it’s a health promotion intervention. This can be challenging for recruitment when you don’t know what you’re signing up for.

All the men will know is that we are testing two different health promotion and wellness interventions that have been shown to be good for men with prostate cancer. That’s about as far as we go.

Most people who sign up really like it, but they don’t even know that they’re signing up for a mindfulness intervention. We’re not trying to deceive anyone, but we need it to be blinded like this to increase the rigor of our results.

Why mindfulness? As we’re doing a better job of prostate cancer screening, we’re finding more indolent or lower grade prostate cancers. Many of these cancers don’t need to be surgically removed or radiated. Active surveillance is becoming a more possible management paradigm. We know that trend is only going to continue.

Many patients are happy with active surveillance. But there are others who, because of how they grew up or because of what cancer means to them, equate cancer with death. When they’re told they have a tumor, they just want it out.

We’re dealing a specific demographic. Older men might be used to the idea of just wanting to get the situation fixed. That’s how they may cope. We’re also dealing with a treatment culture in which active surveillance hasn’t totally caught on. There are still quite a few urologists who recommend what they were trained to recommend: surgery or radiation even for a very low-grade tumor.

There is a certain type of man who will leave active surveillance after one to three years for definitive therapy even when it may not be medically warranted. This shift may be more connected to them wanting peace of mind and just wanting the cancer out.

I always try to say to patients, “If that’s what it’s going to take for you to get peace of mind, more power to you. You know better than me. I don’t have prostate cancer.” But at the same time, as a health psychologist involved in behavioral medicine, I know that there are other ways to help men manage their anxiety than through surgery.

Therefore, we’re exploring which behavioral approaches can be delivered to keep men on active surveillance longer when it is medically warranted. If their physicians say that they can stay on active surveillance longer, we try to support that. You’re hoping that with mindfulness meditation you’ll be able to help men stay on active surveillance longer.

Could mindfulness ultimately be a routine part of active surveillance programs?

Dr. Victorson: Yes. That is the 30-year career goal. We’re not going to be able to answer that question from this five-year trial, though. One of the biggest indicators of peace-of-mind-related departure from active surveillance is uncertainty intolerance and fear of progression. Those two things can form a powerful cocktail that might drive a man to leave active surveillance prematurely. Some men are able to tolerate uncertainty and fear of progression more than others.

We know that mindfulness training can be very useful in helping someone learn to tolerate uncertainty to a greater extent. We can help build that muscle, if you will, in tolerating uncertainties and with sitting with the discomfort of not having your tumor taken out. We are looking at mindfulness training to help reduce fear of progression and increase tolerance to uncertainty. We think those are two important mechanisms toward this goal.

The psycho-educational health promotion group of men and their partners will learn how to integrate positive health behaviors into their lifestyles—things like eating more vegetables, getting more physical activity, and being more aware of their patterns and behaviors. The program doesn’t have anything to do with mindfulness, regulating emotion, or tolerating uncertainty.

Learn more about Dr. Victorson’s clinical trial.

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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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The Psychology of Cancer Survivorship

Dr. Arash Asher is the Director of the Cancer Rehabilitation and Survivorship program at Cedars-Sinai Medical Center in Los Angeles, California.

Prostatepedia spoke with him about the issues cancer patients often face.

Join Prostatepedia to read the rest of this month’s conversations on stress, depression + prostate cancer.

What are some of the issues that come up for cancer patients after treatment?

Dr. Asher: There are physical issues and then there are psychological, emotional, and spiritual issues. In the physical domain, the most common complaint by far is fatigue, which may not seem very significant, but it often has a psychological component. It is consistently a major issue in cancer quality-of-life studies. Fatigue tends to be the most distressing symptom of all of the different symptoms that cancer patients go through.

Not pain?

Dr. Asher: We generally do a much better job of managing pain. And not everyone has pain. For example, of those with metastatic prostate cancer all over their bones, only 22% or so have pain, whereas fatigue is ubiquitous. Whether you’re going through chemo for breast cancer, prostate cancer, pancreatic cancer, or any other type of cancer, it is almost impossible not to experience some fatigue. Fatigue is what really keeps people from doing things that are meaningful and important to them, so it tends to be the most distressing symptom, perhaps because it’s so common.

Is fatigue always directly associated with a treatment, or is that fatigue due to treatment plus any stress, anxiety, or depression the person may be having about the fact that they have cancer?

Dr. Asher: This is why I find this a fascinating problem: it may involve all of these facets together. It could be just the cancer itself, so you could have fatigue before you even start any treatment. Clearly, chemo and radiation cause fatigue. And it could also be the emotional stress— not sleeping well, nutrition changes, and being in pain all the time. It’s exhausting. Depression and fatigue have a lot of overlap, and the challenge is teasing apart all of these different factors and coming up with a plan once you sort them out.

Are there any other issues common to multiple cancers?

Dr. Asher: Everyone has fear of something, though fears may be different. For some, it just may be the fear of death, fear of the unknown, or fear of becoming dependent. Many fear losing independence and having to rely on or burdening their loved ones. This kind of fear is quite common.

In the cancer world, you hear a lot of talk about stress, but you very rarely hear people talk directly about fear. Is stress a code word for fear? Or is it different?

Dr. Asher: Stress is a complicated issue. Stress can be a good thing. There’s a good TED Talk about the science of stress.

More and more studies show that stress doesn’t really hurt us or kill us, but our perception of stress is more impactful. Studies show that people who perceive stress as something that allows them to rise to the occasion, perform better, or overcome a challenge tend to have higher survival rates. If someone views stress as something that’s going to hurt and negatively impact them, that perspective tends to have a spiral effect and is associated with higher mortality rates.

Over and over, studies show that chronic loneliness is associated with a poorer cancer prognosis. Chronic loneliness is a more negative risk factor than this loose idea of stress, which is so dependent upon one’s personal interpretation of the phenomenon. I guess you could tease out stress to be both fear and loneliness, though. Dr. Asher: It could be fear. It could be loneliness. It could be a sense of poor self-efficacy.

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