Coping With Prostate Cancer

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Living with prostate cancer involves much more than choosing the best treatments. Of course, it means coping with physical side effects, ranging from erectile dysfunction to fatigue. But it also means coping with the diverse emotions and life changes that can come with a diagnosis of cancer. You may struggle with who to tell and where to obtain support, as well as balancing practical issues like finances. Being aware of what you may encounter and how to manage it all can help.

Emotional

A diagnosis of prostate cancer can feel devastating, and it doesn't necessarily matter whether your cancer is a low-grade highly curable cancer or an aggressive type that has spread. Being faced with a life-threatening disease of any form can be a shock. It's normal to experience a wide array of emotions that sometimes run the gamut in a single day. 

Expressing Emotions

Certainly, keeping a positive attitude can improve your quality of life when you're living with cancer, but contrary to popular belief, being positive all the time does not actually improve your prognosis. Expressing negative emotions when you have cancer can help both physical and mental outcomes.

If you are hesitant to do so or feel like you shouldn't because of unfair expectations that you need to be "courageous and strong," remember that holding things in can take its toll. Try to find an outlet that is comfortable for you, be that a friend, a therapist, or someone else.

Facing Fears

Fear is very common with prostate cancer—not only the fear of death but the fear of what the diagnosis will mean as far as side effects. Could treatment result in impotence? What about incontinence?

In some cases, the uncertainty of an outcome is almost harder to face than the worst-case scenario, should it occur. Having a thorough and honest conversation with your urologist is a good first step. What are the potential side effects of treatment? If these side effects occur, what can be done? What is plan B if plan A is not effective? Put runaway thoughts and feelings to rest with facts.

Coping With the Unexpected

No matter how precise a scientific discussion of your cancer appears, there is an unpredictable element that goes along with any diagnosis of cancer. This means that people can make all of the "right choices" when it comes to their cancer, but still have a recurrence or side effects that reduce their quality of life.

It's hard to prepare for the unexpected and fight "could have, should have" feelings, other than reminding yourself that medicine isn't a perfect science. You can also work to build your resilience to cope with tough times. Identifying what you can control and reframing those things you can't is a good start. Some cancer centers even provide resilience training courses for survivors.

Physical

The side effects of prostate cancer treatment can be challenging in many ways. Some may affect how you feel about yourself. Some can affect relationships. Others can affect your ability to do your job or continue to participate in the activities you most enjoy.

Sex During and After Prostate Cancer Treatment

While many doctors recommend waiting for three to six weeks before resuming sexual activity after prostate cancer treatment, it's the long-term concerns that worry many men. 

Sexual concerns can be broken down into three categories:

  • Desire: Desire is the wish to have sex and can be affected by the psychological impact of a diagnosis, as well as low testosterone levels due to treatment. Worry about performance, the psychological impact of a cancer diagnosis, fatigue, and self-image can all play a role.
  • Erections: Most of the treatments for prostate cancer can contribute to erectile dysfunction for some people.
  • Orgasm: Most men will be able to have an orgasm after prostate cancer treatment, including men who have erectile dysfunction. Since the prostate makes seminal fluid, it's important to note that treatments such as surgery and radiation will usually result in dry orgasms.

Many if not most men have some sex-related issues related to prostate cancer treatment that they need to cope with, and the risk of them is greatest in those who have other medical conditions that can cause sexual issues, such as high blood pressure, atherosclerosis, diabetes, or obesity.

According to a 2018 study, men most often experience reduced sexual activity and relationship intimacy during the first six months of prostate cancer treatment, but this often improves with time. Most prostate cancers are very slow growing and there is usually ample time to thoroughly evaluate your options from the standpoint of sexual concerns before you begin treatment. There are also solutions that can help if concerns arise thereafter.

Addressing Problems With Desire

Desire is more difficult to quantify than erections and is spoken of less frequently. If desire appears to be a problem, it's important to talk openly with your doctor. Many of the contributing factors can be addressed with solutions like therapy and support groups.

Though reducing testosterone levels is often a goal of therapy, there are circumstances in which testosterone may be given to improving desire. Other approaches, such as sublingual oxytocin, have also helped some men improve their desire as well.

Most important of all is to talk to your partner. Many men are relieved to hear that their partners are very interested in helping once the conversation is initiated. Experimenting with sex toys, lubricants, new positions can also be beneficial.

Treatment of Erectile Dysfunction

Erectile dysfunction is very common in men who have undergone treatment for prostate cancer, especially prostatectomy, but many men also find that their symptoms improve with erectile dysfunction treatments such as Viagra. 

Again, it should be noted that having erectile dysfunction does not mean that a man will be unable to have an orgasm. The nerves and blood vessels that are commonly damaged during prostate cancer treatments are very important for achieving an erection but are not very important for achieving orgasm.

Options include oral medications (such as Viagra (sildenafil), Cialis (tadalafil), Levitra (vardenafil), Stendra (avanafil)), penile injections, penile implants, vacuum constriction devices, external penile prostheses, and more.

Fatigue and Weakness

Cancer fatigue is common with many of the treatments for prostate cancer, and it causes many men to become less active. Simply acknowledging that reduced energy levels are inevitable can help, as it raises your consciousness about prioritizing activities and learning to accept help.

You've likely heard that exercise can help people cope with the physical effects with almost any cancer, and the same is true with prostate cancer. In fact, a 2014 review in the Journal of Clinical Oncology found that a basic strength and weight training program could improve muscle mass, lean body mass, and cardiorespiratory fitness in men coping with prostate cancer, as well as significantly reduce fatigue. Do what you can, when you can.

Social

When you first share your diagnosis with family members, friends, or acquaintances, you may be surprised at the reactions you receive. People with cancer often expect that loved ones will be ready to listen, empathize, and partner up to help you face your disease and continue living a vibrant life. The truth is, many people struggle with responding in a way that is helpful.

Choose Who to Talk to About Your Cancer

You don't have to share your diagnosis with everyone. It's helpful to have a friend or loved one (or two) who you can share with openly and who you think will understand the ways in which you need to be supported. You may want to specifically discuss your diagnosis with someone who has had or cared for a loved one with cancer.

When you do choose to share, you may need to educate people about your disease. Treatments are changing, and no two prostate cancers are the same, so an acquaintance's experience two decades ago could be a far cry from what you may expect yourself. Some may not know that, unlike some other cancers, prostate cancers are not always aggressive. Many are also unaware that early prostate cancers are highly curable, and even men with advanced types that have spread can live for decades.

Give the person you're speaking to an opportunity to react to, absorb, and process your news. If they don't react the way you expected, remember that everyone copes differently and that you may be better supported turning to someone else.

Let People Know How They Can Support You

Be direct when asking for support. How would you like your friend to help? Ideas might include mowing your lawn, driving you to appointments, or doing some research for you.

If you do ask for input on your decisions, however, make sure to set clear boundaries. If you don't want help as you consider your treatment options, for example, state your feelings clearly.

If you become irritated with another's opinion, be direct and clearly set your boundaries again. Chances are that your friend simply wants to help and has no idea how distressing it is to you. Remember that you need to be true to yourself and honor your own choices.

Support Groups/Support Communities

Whether in-person or online, support groups are a great way to connect with those who know what you are going through. Groups also offer men a chance to learn more about their disease and the way that others have coped with some of the side effects of treatments in a non-clinical way. Speak to your doctor about a referral or search for a group in your area on the American Cancer Society's website.

Practical

While cancer diagnosis and treatment can feel like a full-time job, day-to-day duties don't go away. In addition, there are many new practical concerns that can arise with a diagnosis. Some of these include:

Employment Concerns

For men who are still working, questions can arise both about the ability to work, and how much you are required to share with your employer. With cancers that can be treated curatively with surgery or radiation therapy, you may be able to return to work following treatment. That said, fatigue often persists for several weeks.

You are not required to share your diagnosis with your employer but may need to do so if you request "reasonable accommodations" under the Americans With Disabilities Act. The ADA requires employers with 50 or more employees to provide these accommodations that may include things such as work-from-home options, changes in start times, part-time schedules, and more. The not-for-profit organization Cancer and Careers provides free information and assistance for people with cancer who are experiencing concerns with their work due to cancer.

Insurance Coverage

When you are first diagnosed, it's very helpful to sit down and review your insurance policy. Many people want to jump into treatment and neglect to inquire as to whether or not their providers are in-network or out-of-network, an oversight that can be very costly in the long run.

There is usually ample time, however, to make decisions with cost in mind. If a treatment is only available out-of-network, that does not mean you will need to pay out-of-network costs. But it does mean that you will need to file an appeal before you receive the treatment. There are options for financial assistance with cancer for those who are concerned. A social worker at your cancer clinic may have further suggestions as well. 

When Prostate Cancer Is Advanced

While people are more likely to die with prostate cancer than from prostate cancer, the latter can and does occur. If your cancer is advanced, it's helpful to initiate a discussion about end-of-life care and advance directives with both your doctors and loved ones.

Far too often, people hold off on choosing hospice care until only a few days before death. The truth is that hospice care can provide tremendous support for both you and your family if your doctor estimates that you have six months or less to live. Hospice care can be canceled without any financial penalty if you choose to resume active treatment.

Adjusting to Your New Normal

While most people do well with prostate cancer treatment, and the survival rate is very high, treatments can change people physically and emotionally. Side effects of treatment are fairly common, and some of these can persist long after treatment has been completed. The concept of "survivorship" with cancer is finally being addressed, and physicians are becoming much more aware of the need to help people live their best "new normal" possible after a diagnosis.

If you are coping with any of the late effects of cancer treatment, talk to your doctor. It's only recently that the idea of cancer rehabilitation (similar to cardiac rehabilitation after a heart attack) has taken off, and is improving the lives of people who have survived treatment. Counseling can also be an integral part of cancer rehabilitation, helping people adjust to the many emotions and changes that can occur. Since this is so new, you may need to initiate the conversation with your doctor.