No man wants to hear that they have the “C-word:” Cancer. Unfortunately, 1 in 8 men will be diagnosed with prostate cancer in their lifetime. A prostate cancer diagnosis can range from localized curable disease to disease that has spread outside of the prostate gland to other parts of the body (most commonly lymph nodes, bone, lungs, and liver). Regardless of the stage of prostate cancer, hearing that you have cancer will likely spark a range of emotions. Many men will feel anxious, overwhelmed, and afraid. Famously described by Elisabeth Kübler-Ross in 1969, the five stages of grief (which may occur in any order), are often similar to what patients will go through when processing a recent diagnosis of prostate cancer. You will likely experience these feelings as well.
The 5 Stages of Grief
- Denial: Feeling numb and carrying on for a period of time as if nothing has happened
- Anger: Feeling angry towards oneself or others
- Bargaining: Making deals with oneself, or perhaps with God, that if one acts in a particular way, everything will be fine
- Depression: Feeling sad and/or hopeless
- Acceptance: Accepting the diagnosis. This usually happens gradually over time.
There are many different ways to cope with the stress of a prostate cancer diagnosis (which will certainly vary for each individual), but generally, these strategies may include the following:
- Learn about your prostate cancer diagnosis. Gather information to make an educated decision regarding treatment options.
- Maintain communication. Let both your loved ones and your health care providers know how you’re feeling and thinking.
- Anticipate possible physical changes. This is particularly true for men undergoing radical prostatectomy who may experience post-operative urinary leakage and erectile dysfunction; for men undergoing radiotherapy who may have effects on urinary and bowel function; and for men undergoing hormone treatments who may have hot flushes, mood changes, and other effects.
- Maintain a healthy lifestyle. Eat well and exercising regularly.
- Accept help from family and friends. Don’t be afraid to ask for help, especially during radiotherapy and after surgery (post-radical prostatectomy).
- Determine your goals and priorities. Make time for the activities that are most important to you.
- Try to maintain a normal (as much as possible) lifestyle. There is comfort in a daily routine that is familiar.
- Review how prostate cancer may impact your finances. Unexpected expenses may arise after a diagnosis of prostate cancer, including financial constraints associated with the treatment of localized prostate cancer, medications for advanced prostate cancer, and effects of treatment on the ability of you and your family members to work. More than 15% of men with localized prostate cancer may face extreme financial hardship related to their treatment. This is important to discuss with your physician when considering your treatment choices
- Talk to other men who have had prostate cancer. Talking with other men who understand what you’re going through can be very helpful. This is particularly true when you’re considering a type of treatment for localized prostate cancer. It is often helpful to talk to other men that have undergone radiation, surgery, or active surveillance.
- Develop your own coping strategy. This may include praying/meditating, yoga/relaxation techniques, journaling, and more depending on what works for you.
Although a prostate cancer diagnosis is a life-changing event in a man’s life, rest assured that your healthcare team has walked this journey with many men before you. Additionally, many cancer centers have patient support groups, as well as psycho-oncologists on staff to support patients. These are experts in providing specialized mental and emotional support from the time of diagnosis through treatment, and beyond.
It is important to acknowledge that visiting with these support groups or psycho-oncology providers is not a sign of weakness, but rather a very important step for helping men develop coping mechanisms for their prostate cancer diagnosis and subsequent treatment. When assisting men with coping with stress after a prostate cancer diagnosis, there is no “one size fits all” approach. Coping strategies should be individualized based on your goals, background, and social situation to help you move beyond a prostate cancer diagnosis and cope through treatment and follow-up.
The burden of a prostate cancer diagnosis, treatment, dealing with side effects, and the anxiety of follow-up can be quite difficult for men going through this process. There are many ways that men may get through this challenging time in their life: relying on a spouse/partner, family, friends (particularly those who may have gone through a similar journey), and places of worship, to name a few. Above all else, it cannot be understated that you are not alone in this journey.
In the United States, there are more than 3 million prostate cancer survivors — men just like you who have been or are going through the prostate cancer journey. As such, there is a community of men who understand the physical, mental, emotional, and spiritual feelings you are going through — many of whom are willing to help by sharing their experiences, offering support, and answering questions. This community of prostate cancer survivors makes up the foundation of prostate cancer support groups all across the country.
The purpose of prostate cancer support groups is to bring together people with similar experiences to share their frustrations, concerns, and fears, and to minimize feelings of isolation. By spending time with men who have been through similar experiences, you may feel better, be more hopeful, and not feel so alone. Even with phenomenal support from a spouse/partner, friends, and family, being part of a support group allows you to share feelings, and vent with men who are also going through prostate cancer diagnosis and treatment. Further, as you navigate this new experience, patient support groups offer the opportunity to learn from the experiences of men who have been through this process before.
Here are several additional reasons why you should consider joining a prostate cancer support group:
- Gain camaraderie and support
- Become empowered to face your diagnosis and your treatment
- Improve your understanding of prostate cancer treatment and side effects
- Get practical feedback about treatment options
- Feel less anxiety and depressive feelings
- Learn coping skills and gain tools to deal with stress and be able to adjust to your changing health
- Talk openly about your feelings and fears
Although most major cancer centers will have a prostate cancer support group, many men may not have that luxury. Also, it is important to be careful in participating in unauthorized online patient forums. This is not just for personal security purposes, but also to avoid disinformation that may cause undue anxiety or stress. The following are reputable websites/organizations that offer prostate cancer support groups and/or resources for men with prostate cancer:
- Cancer Patient Voices: Listen to men who have gone through prostate cancer diagnosis and treatment share their experiences
- Prostate Cancer Foundation: PCF offers several private, moderated support groups on Facebook for different interests and needs. These include prostate cancer and veterans; newly diagnosed prostate cancer; prostate cancer caregivers; metastatic prostate cancer; prostate cancer survivors; prostate cancer and gay, bisexual, and transgender women; prostate cancer and African American men; prostate cancer and active surveillance; prostate cancer and men diagnosed under the age of 50; and prostate cancer and family survivors.
- ZERO Prostate Cancer
- Male Care
- Imerman Angels
- CancerCare: CancerCare offers a 15-week online support group for people diagnosed with prostate cancer who are currently receiving treatment. This initiative is led by an oncology social worker and takes place using a password-protected message board format.
Approximately 1 in 8 men in the United States will be diagnosed with prostate cancer in their lifetime. A prostate cancer diagnosis may stir up many emotions, including anxiety, anger, despair, depression, and hopelessness. Much like when people lose loved ones, patients diagnosed with cancer often go through the stages of grief: denial, anger, bargaining, depression, and acceptance. These stages are an attempt to process change and protect ourselves (and our family/friends) while we adapt to a new reality or new “normal.”
Mental health is how you think, feel, and behave. Importantly, your mental health and physical health are connected—meaning that one can affect the other. Men diagnosed with prostate cancer are at a higher risk of mental health issues, such as anxiety and depression, than the general adult. The mental health effects of prostate cancer can occur for men at many stages along the prostate cancer journey. A man may feel these mental health effects after or because of the prostate cancer diagnosis. He might also feel them throughout treatment and recovery as he adjusts to his diagnosis and living with the side effects of treatment. Importantly, these effects may be there all the time or may come and go. Some will be related to prostate cancer treatments and some may be related to dealing with the diagnosis.
Aspects of treatment for localized prostate cancer that may affect mental health
After the initial shock of a prostate cancer diagnosis, most men with intermediate and high-risk prostate cancer will need to decide on a treatment plan.
Among those men who choose active surveillance and undergo monitoring rather than initial treatment, cancer-related anxiety is quite common. However, many studies have shown that this improves over time. In men where surveillance is appropriate, this choice has not been found to have an increased risk of depression, emotional well-being, or other mental health effects.
Many studies suggest that among patients undergoing surgery or radiation treatment for localized prostate cancer, the side effects of treatment are most likely to affect a man’s mental health. Because of this, it is important to ask your doctor questions about side effects of treatment options such as radiotherapy and surgery. The most common side effects of radiotherapy and surgery are urinary incontinence, erectile dysfunction and bowel toxicity, such as diarrhea.
Although depression and anxiety are more common among men with prostate cancer, treatment choice (i.e., surgery or radiation) doesn’t appear to have a big effect on a man’s chances of experiencing these outcomes. In an important study published at the end of 2021, among 2,072 men with localized prostate cancer, treatment-related regret at 5 years after diagnosis was reported among 16% of men undergoing surgery, 11% of men undergoing radiotherapy, and 7% of men undergoing active surveillance.[1] The study showed that regret appears to be caused by many reasons. It also is influenced by the outcomes of the treatment (cancer control, sexual function, and others) and patient experiences, and how this compares to their expectations about these outcomes. So, more important than the specific treatment you choose is the process of getting there. This study highlights the importance of understanding the side effects of each treatment approach and asking your doctor questions so that you have a full understanding of the treatment plan and potential side effects before treatment begins.
Aspects of treatment for advanced prostate cancer that may affect mental health
The backbone of treatment for advanced prostate cancer includes androgen deprivation therapy (ADT), which reduces testosterone to very low or “castrate” levels, thus removing the “fuel” for the prostate cancer cells. There is a complex signaling pathway between parts of the brain, the pituitary gland, and the testicles that leads to testosterone production. This pathway may be disrupted by medications that affect the signals between the brain and pituitary gland – these are groups of medications called GnRH (LHRH) agonists or antagonists. ADT may cause many effects on your body, many of which may have direct or indirect effects on your mental health. A lot of men experience hot flashes, much as women do when going through menopause. Fatigue is also common as is a loss of libido, or sexual interest. Over the longer term, ADT can lead to depression and perhaps early dementia. Long-term use can also affect your body’s composition by increasing body fat and decreasing muscle mass. It is important to know about these side effects, understand that they are expected, and find ways to combat potential effects on mental health. Most men find that a regular exercise routine, particularly when on ADT, helps to improve their mental and physical health.
What to do if you are depressed or have thoughts of hurting yourself
If you are feeling depressed, it is important to talk to your doctor. Prostate cancer visits with your doctor at the time of diagnosis and during follow-up should include questionnaires or forms to screen for anxiety, depression, despair, thoughts of suicide, and other mental health effects of prostate cancer. Regardless of the screening results, you should mention to your physician if you feel mentally unwell. Cancer centers have specialists (such as psycho-oncologists, psychologists, and psychiatrists) who are experts in treating these symptoms and your doctor can make a referral. If you are feeling like hurting yourself, you should seek help right away regardless of the time of day or night. Reach out to friends, family members, your doctor, and/or the National Suicide Prevention Lifeline, which is available 24 hours/day at 1-800-273-8255 in several languages.
The following symptoms may indicate mental health concerns that you should consider discussing with your doctor:
- Feeling sad or depressed
- More tired than usual
- Lack of motivation
- Having mood swings
- Abnormal changes in appetite (increased or decreased)
- Trouble coping with daily problems
- Sleeping more or less than usual
- Disconnecting from family, friends, and/or co-workers
- Loss of interest in activities that typically are joyful
A prostate cancer diagnosis can be a life-changing event in a man’s life. It is important to know that your feelings about prostate cancer are valid. Feeling stressed, anxious, or depressed when you’re dealing with a new diagnosis or side effects of treatment is normal. You don’t need to feel guilty or ashamed to ask for support. In fact, doing so demonstrates great insight and bravery.
References:
[1] Wallis C JD., Zhao Z., Huang L-C.et al. Association of Treatment Modality, Functional Outcomes, and Baseline Characteristics With Treatment-Related Regret Among Men With Localized Prostate Cancer. JAMA Oncol. 2022; 8(1):50-59.