Nearly 174,650 men in the United States will be diagnosed with prostate cancer each year.¹ Prostate cancer has one of the highest survival rates and is frequently slow to spread.² But even with major advances in treatment options, there are times when the cancer progresses and becomes advanced.
While this diagnosis is often overwhelming for the individual, it can be equally so for loved ones who often are left feeling helpless and wondering how they can help. But experts agree that with treatment many men can live a long time.
“This can happen years after surgery or radiation for prostate cancer,” says Dr. Carlos Ramos, an advanced prostate cancer specialist at Advanced Urology Institute in Panama City, Fl. “You start to see a rise in the PSA (prostate-specific antigen blood test) after it has been subdued for years.”
That’s when treatment must shift, says Ramos. “The earlier you can detect a metastatic disease, the better.”
Men living with advanced prostate cancer say having someone at their side can make the cancer journey easier – and help them get the best quality of life, even while undergoing treatments.
That was exactly what happened for Michael Topp, now 71, of Freeport. When he was first diagnosed with prostate cancer, he refused to even read pamphlets from his doctor about the disease.
“I was completely in denial. My doctor gave me a lot of paperwork, which I immediately threw on the floor and said, ‘I don’t want to read that,’” says Michael. But his wife Chrissy picked up the materials and changed his thinking.
“She coached me. She was a pillar of strength. She read the pamphlets and said, listen, we need to do this. And when I calmed down, I realized I had to do the right thing, and she helped me do that. She was my rock,” says Michael. The couple celebrates their 50th wedding anniversary this year.
If you’re wondering how to support a friend or loved one diagnosed with advanced prostate cancer, here are some tips on how to help:
1) Get Expert Care: Don’t be afraid to ask for an advanced prostate cancer specialist when your loved one’s prostate cancer progresses into advanced prostate cancer. Typically, men whose prostate cancer reappears after surgery or radiation are treated with drugs that suppresses testosterone production. The effectiveness of this treatment diminishes over time. When the levels of PSA (prostate-specific antigen, measured in blood tests) start to rise, it’s time for a referral to an advanced prostate cancer specialist or clinic in the area. These specialized clinics offer a full range of services provided by doctors, nurses and nurse navigators that can help coordinate many different aspects of a patient’s care. These experts emphasize that loved ones often play a vitally important role in keeping communication between doctors and patients flowing smoothly, weighing treatment options and next steps, and helping keep track of the many tasks and appointments that men with advanced prostate cancer may have.
2) Get Informed: A number of new treatments – including anti-androgen therapy, radiopharmaceuticals, chemotherapy and immunotherapy – have changed the way men with advanced prostate cancer are treated. Immunotherapy, which uses a patient’s own cells to stimulate the body’s immune system to target and attack cancer cells, is one of the most exciting categories of cancer treatments to emerge in the past decade. While immunotherapies have not yet become available for all cancers, immunotherapy for advanced prostate cancer has been used since 2010. But availability of these new, more effective treatment options demand careful disease management. There are important questions about when to give each of these therapies and what sequence provides the greatest positive impact on survival. Without a “one-size-fits-all” approach, it is more important than ever to do your research, be informed about treatment options and discuss the treatment approach with a physician.
3) Attend Appointments: Having a spouse, family member or close friend – people who can help act as support partners and caregivers – by their side is every bit as important as finding the right doctor. In addition to being there to help with daily life, these loved ones are able to hear a physician’s guidance or instructions and absorb them in ways that a patient may not be able to at the time. In discussions with doctors, it can be easy for some men to become overwhelmed or miss important details, including options for treatment.
4) Be Organized: Keep a three-ring binder or files where notes from each doctor visit can be stored and kept in chronological sequence. This will be helpful as your loved one’s cancer journey proceeds, keeping details and instructions readily at hand. You can also prepare a list of questions to ask the doctor in advance of every appointment and refer back to those questions and responses when you need to recall pertinent details related to your loved one’s care (e.g., treatments received, medications prescribed, medical advice and instructions, general health information, etc.).
5) Watch: Diligent monitoring is crucial. Men who are receiving treatments to suppress testosterone production should get PSA tests regularly. If PSA levels rise above >2 ng/ml, doctors usually do a bone scan to see whether the prostate cancer has grown and spread to bones or other organs. New ways of doing bone scans can detect metastatic cancer that used to be undetectable and helps physicians determine when more advanced treatments are needed. Make sure that regular monitoring is part of any treatment plan to ensure your loved one can take advantage of newer treatment options. The right treatments at the right times may help patients live longer and better.
6) Report Symptoms: While it is important to be alert to any changes in health, some men with advanced prostate cancer are reluctant to admit when symptoms occur. But loved ones who are close to them are in a great position to notice changes that should be discussed with a doctor. Early symptoms may be especially important for urologists to know about, so that they can prescribe the most effective treatments at the optimal time. Take note of anything out of the ordinary and make sure your loved one brings it up at his next appointment. You can also serve as back-up to help communicate any changes in health to the physician, as necessary.
7) Take Care Of Yourself: You cannot take care of another person if you aren’t taking care of yourself. In many instances, what’s good for a man with prostate cancer is good for loved ones too – such as exercise, good nutrition and sleep. You can cook healthy meals together, for example, or motivate each other to stay active by setting a scheduled time every day to go on a walk, play golf or go to a nearby gym. Find a hobby you both enjoy and stick to it.
8) Reach Out: Join a caregiver support group or other social network, if you can. Ask a nurse navigator at your advanced prostate cancer clinic for suggestions. This not only is part of your own self-care, but can be a source of information and insights. A supportive community of people going through similar experiences can help reduce feelings of distress, depression and anxiety, as well as provide emotional comfort and moral support.
Many people dealing with advanced prostate cancer can find useful resources online, including from ZERO (zerocancer.org/) and the American Cancer Society (cancer.org). Additionally, many advanced prostate cancer clinics have their own websites with materials and information for both men living with prostate cancer and their loved ones.
For more information about Advanced Urology Institute, visit https://www.advancedurologyinstitute.com.