There are many treatment options for men who are newly diagnosed with prostate cancer. There are a lot of considerations, and all men (and their families) want to make the “right choice.” It is a doctor’s role to help guide their patients through shared decision-making to find the treatment choice that is best for them.
Most men newly diagnosed with prostate cancer will need to decide between a variety of treatment options. These choices include active surveillance, radical prostatectomy (surgery), and radiation therapy (either external beam or brachytherapy). Cancer control, short- and long-term side effects, and the burden and costs of treatment will be important to think about in the decision-making process. Ultimately, the goal is to allow each man to find the treatment choice that feels right to him, given his goals and priorities. However, some men will eventually regret their choice. A better understanding of how and why some men regret their choice will hopefully mean fewer men experience regret in the future.
Recent research on treatment regret has shown that it is most common in men where the outcomes they experience three and five years after treatment were “a lot worse” than they expected before deciding on treatment. This may be either because the treatment was less effective than expected (i.e., the cancer control was not as expected), or because the treatment had worse side effects than expected.
This research highlights an opportunity to reduce treatment-related regret. Getting more than one opinion and making sure you have all of your questions answered before making a treatment choice is an important action you can take to reduce your chances of regret in the future.
In the leading study that looks at treatment-related regret, patients who chose active surveillance were less likely to experience treatment-related regret than those who chose active treatment with surgery or radiotherapy. This means that for men who are eligible, active surveillance is a treatment approach with a proven lower rate of long-term regret (even though the side effects of this treatment may include urinary incontinence, sexual dysfunction, and bowel issues). Plus, men with serious changes in sexual function were more likely to have regret.
Other research has shown that a “discussion of all treatment options” may reduce treatment-related regret. This means it’s important to talk with several different kinds of doctors including urologists and radiation oncologists before making a decision.
In the end, everyone involved in your prostate cancer journey — you as the patient, your family, and your doctors — are hoping that you can find the right treatment for you. Your family and healthcare team also want to help you on that journey. Fully exploring all treatment options and understanding both the cancer control and side effects of each choice is critical to help prevent treatment regret.
For men who are newly diagnosed with prostate cancer and their families, there are many things to consider: What is my prognosis? What are my treatment options? What are the short and long-term side effects of treatment? How might this affect my family members? One of the questions that may not immediately come to mind but is very important is, “How will this affect my finances and those of my family?” A new cancer diagnosis comes with a number of financial implications:
- Prostate cancer testing and treatment may have significant direct costs (“out-of-pocket” costs).
- There are additional indirect costs including lost income due to missing work (for both the man diagnosed with prostate cancer and other family members who may be assisting in his care), transportation costs to the hospital, and others
- This may affect your eligibility for certain kinds of insurance, including life insurance
- It may affect premiums for health insurance
The National Cancer Institute defines financial distress as “problems a patient has related to the cost of medical care.” Numerous studies have shown that patients with cancer are more likely to have financial distress than people without cancer. Some studies have shown that cancer patients in the United States may spend more than 20% of their annual income on medical care.
Direct prostate cancer treatment is a large contributor to financial distress, but it is far from the only one. There also can be many out-of-pocket costs. Out-of-pocket costs include copayments, deductibles, and coinsurance. These costs may contribute to hospital stays, and outpatient services including testing or procedures, medical appointments, surgeries, radiotherapy, and prescription drugs.
Out-of-pocket costs may vary substantially depending on location. In Canada and many parts of Europe, direct out-of-pocket costs for medical care are low or negligible, but in the United States, they may be substantial. Within the United States, costs may also vary depending on the patient’s health insurance.
There are, however, many other ways that a new cancer diagnosis may affect your family’s finances. First, you are likely to need to take time off work for medical appointments, tests, treatments (such as surgery or radiotherapy), and recovery from treatment. Depending on employee benefits, this may mean a substantial loss of income. Family members including spouses or children may need to take time off work as well. On top of loss of income, there are other indirect costs including transportation, parking at the hospital, and more.
In addition to the stress of worrying about how to pay for health care costs, many patients worry about paying for other necessities (food, housing, etc.) as a result of the costs of their medical treatment. Financial distress is more common and may have a greater effect among men with lower incomes and assets, men who have other financial responsibilities including raising children, and (in some studies) among minority patients. Additionally, those with more advanced cancer, those with a poor prognosis, and those who have chronic conditions (such as heart disease or diabetes) as well as prostate cancer have a higher risk of financial toxicity.
Financial distress can lower the quality of life of cancer patients. They may experience more symptoms and greater pain. Additionally, the stress of managing financial concerns can affect mental health by contributing to anxiety and depression. One study demonstrated that financial distress may be more severe than the physical, emotional, or social distress that follows a cancer diagnosis.
However, there are ways to reduce financial distress. Do not hesitate to share financial concerns with your physicians when considering treatment approaches. Further, most institutions have a financial navigator or social worker who may assist with identifying cost-saving methods (such as indigent care plans for prescription drugs, which are available through most of the companies that supply prostate cancer drugs) for treatments that are appropriate for you.
After being diagnosed with prostate cancer, men (and their spouses and families) sort through a lot of information to decide on treatment options. They must consider many factors including cancer control, short- and long-term side effects, and the burden and costs of each treatment option. It’s important in this decision-making process to understand that no treatment approach is 100% certain to result in a prostate cancer cure. Indeed, it is often the cancer characteristics rather than the treatment approach that most strongly drives the chance of cancer recurrence. “Cancer characteristics” mean the risk group, as determined by PSA levels, cancer stage, tumor grade, and for patients who had surgery, the surgical margin.
After the very active process of deciding on a treatment choice, the time following treatment may feel a little bit passive or slow. During this time, most patients are monitored, unless there is a specific reason for a second (adjuvant) treatment to be given. Even then, following adjuvant therapy, most patients undergo a period of observation. Under observation, PSA tests are performed on a scheduled basis, between every 3 months and every year.
While there are some controversies about using PSA as a screening test before a prostate cancer diagnosis, doctors agree that PSA is a very useful test to use after prostate cancer to check for recurrence. PSA levels in the blood begin to rise as very early evidence of recurrence — before it ever could be detected on CT scans or other imaging tests. Because of this, PSA monitoring makes it possible to catch recurrence early and start salvage treatments.
During PSA monitoring, it is understandable that a man might be anxious about, or fear, his prostate cancer returning. Researchers have found that nearly one-in-three men have a high fear of recurrence. While a high fear of recurrence is associated with younger patient age and certain personality types, cancer-related details (including those that increase the risk of recurrence, such as a higher PSA at the time of diagnosis) and treatment choices were also associated with a higher fear of recurrence.
Over time, many men will find that their fear of recurrence decreases. However, a group of men (approximately 5-10%) will still continue to have a bothersome amount of fear even more than a decade after treatment, with no recurrence in the meantime. It’s important to understand that these feelings are common, and shared by other men. You may find that discussing these concerns with your doctors, your spouse and family members, or other men with prostate cancer can help to normalize them and maybe even help to lower them. Many cancer centers also have access to mental health care that may be helpful in working through these feelings.
Importantly, a number of researchers have found that patients who are more anxious about their prostate cancer, and cancer recurrence, are more likely to start hormone treatments after a PSA recurrence (biochemical recurrence). In this setting, starting hormone therapy earlier does not necessarily improve cancer management or life expectancy. However, it often results in side effects and may not be in your best interest.
Other than prostate cancer recurrence, men also may be worried about developing other cancers. For certain men with hereditary prostate cancers, caused by specific gene mutations, there may be an increased risk of specific cancers. However, for most men with prostate cancer, the risk of other cancers isn’t that much higher than it would be for the rest of the population. Men who are treated with radiotherapy have a higher chance of developing bladder or colorectal cancers, though this increase in risk is relatively small.
Men with prostate cancer should make sure that they stay up to date with other cancer screening tests — for example, getting a colonoscopy for colon cancer. Also, they should share any concerning symptoms (such as blood in the urine) with their doctors so that they get the testing they need.