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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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.

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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.

When Anxiety Impacts Treatment

Dr. John Peteet is a staff psychiatrist at Brigham and Women’s Hospital, and Dana-Farber Cancer Institute, and an Associate Professor of Psychiatry at Harvard Medical School.

Prostatepedia spoke with him about the anxiety and depression many prostate cancer patients face.

Are there common themes or issues that many cancer patients face?

Dr. Peteet: Anxiety around the time of diagnosis is a common theme. It tends to diminish when patients receive a treatment plan, especially if the treatment starts to have some effect. A treatment response provides time for patients to stabilize their functioning and their expectations.

Recurrence is, of course, distressing, but when a treatment works for the recurrence, this typically decreases anxiety and distress.

Then, if treatments ultimately fail, it’s stressful to face discussions about goals of care and what to do with one’s limited time.

In general, when patients lose their ability to function in ways that have been central to their identity—for example, becoming unable to work—they tend to need more help.

Are there issues specific to prostate cancer? There is a fair amount of uncertainty about what the appropriate treatment path might be for certain groups of prostate cancer patients. Does that create a special challenge in prostate cancer?

Dr. Peteet: Some decisions about course of treatment for breast cancer make women anxious, but anxiety about course of treatment is a particular issue in prostate cancer because patients can get so many differing opinions: radiation versus surgery versus watchful waiting. There’s also considerable apprehension on the part of many men about the potential side effects of some of those treatments—especially sexual dysfunction and incontinence.

After treatment, it is anxiety-provoking every time a man returns to see what his PSA indicates that his cancer is doing.

Making decisions about systemic treatment after a recurrence can be difficult because of the concern about side effects. For example, there is sometimes a risk of depression with hormone deprivation therapies, such as Lupron (leuprolide). If a man has a history of depression, he might be particularly vulnerable to depression, or a worsening mood disorder.

I know for many men it can be frightening to see their PSA go up a little bit after treatment: What does it mean? Is my cancer coming back? Is it a temporary bump? What would you say to men who are experiencing that kind of anxiety about PSA testing after treatment? Are there any techniques you would recommend to manage PSA anxiety?

It’s important for men to talk to somebody they trust, who follows the PSA along with them, whether that’s an oncologist, a radiation oncologist, or a urologist. Those doctors would be the ones most involved. Sometimes support groups are helpful for men to just share what the experience is like with other guys.

Do these kinds of issues impact the kind of choices men make? We have another conversation this month in which we talk about how many people come off active surveillance because they’re nervous about whether the cancer is progressing or not.

Dr. Peteet: I have seen a few men unwilling, or very reluctant, to have hormone deprivation treatment because they were concerned about what it would do to their bodies. For example, weightlifters, bodybuilders, or men who are very invested in their sexual functioning, might turn that therapy down.

There are also occasionally men who don’t want to get tested in the first place, don’t want to have a surgery they think will impair their functioning in those ways, or put off treatment. Usually, there are other choices like radiation that are more palatable to them.

So yes, I think it does impact treatment. Their values about what is most important to them do influence the treatment choices they make.

Some men don’t care about side effects. They want to get the cancer out. They might be more apt to choose surgery while somebody else who is more concerned about those other issues might go in a different direction.

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