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 loved ones have decisions to consider about treatment. When thinking about your options, it’s important to know that no treatment can guarantee that prostate cancer will never come back.
In many cases, the chance of the cancer returning depends more on the cancer itself than on the treatment you choose.
Factors that affect the risk of recurrence include:
- Your PSA (prostate-specific antigen) level before treatment
- How abnormal the cells are (Gleason score or Grade Group)
- If the cancer has spread (stage)
- If cancer cells were found at the edge of the tissue removed during surgery (positive surgical margin)
Checking PSA After Treatment
After treatment is a period of follow-up care. Some men need additional treatment after surgery or radiation. This is called adjuvant therapy (right after primary therapy – typically radiation after primary surgery) or early salvage therapy (after a PSA increase after the primary therapy). However, many men simply have regular checkups to monitor their recovery and watch for any signs that the cancer has returned.
Regular PSA testing is one of the most important ways to monitor for prostate cancer after treatment. One common follow-up timeline after surgery or radiation is: a PSA check every 3 months for the first 1-2 years, followed by every 6 months for 2-3 years, followed by annual PSA checks thereafter. Of note, this follow-up plan may vary based on PSA levels, prostate cancer aggressiveness, and health care provider preference.
A rising PSA level is often the earliest sign that prostate cancer has returned. In many cases, the PSA begins to rise long before the cancer can be seen on a CT scan, MRI, or PSMA PET/CT scan.
Finding a recurrence early may allow treatment to begin sooner if it’s needed.
It's Normal to Worry About the Cancer Coming Back
Many men feel anxious before follow-up appointments or while waiting for PSA test results.Research suggests that about 1 in 3 men have a high level of fear that their prostate cancer will return.
Fear of recurrence may be more common in:
- Younger men
- Men with a higher risk of recurrence
- Men with higher levels of anxiety
For most people, these worries become less intense over time. However, 5-10% of men continue to have a lot of fear more than 10 years after treatment, even when there is no sign that the cancer has returned.
If you are struggling with anxiety or fear of recurrence, remember that you are not alone.
It may help to:
- Talk openly with your healthcare team.
- Share your concerns with your partner, family, or close friends.
- Connect with other men who have had prostate cancer by going to a support group.
- Ask about counseling or mental health services if worry is affecting your daily life.
If Your PSA Begins to Rise
A rising PSA after treatment is called a biochemical recurrence. This does not always mean you need treatment right away. Biochemical recurrence has different definitions based on what your primary treatment was:
- After surgery: PSA ≥0.2 ng/mL, confirmed by a second PSA ≥0.2 ng/mL
- After radiation: PSA rise ≥2.0 ng/mL above the post-radiation PSA nadir (the lowest level the PSA reached after radiation before it started increasing)
There are several treatment options for biochemical recurrence after surgery or radiation, which should be discussed with your health care team
If You Worry About Other Types of Cancer
Some men also worry about developing other types of cancer.For most men with prostate cancer, the risk of developing another type of cancer is similar to that of the general population.
However, some inherited gene changes that increase the risk of prostate cancer can also increase the risk of other cancers. You can talk with your healthcare provider about gene testing (also called germline testing) to see if you are at genetically at risk of other cancers.
Additionally, men who have been treated with radiation therapy have a 10-year risk of 2-4% for developing bladder cancer and a 1-1.5% risk of developing rectal cancer. Any blood in the urine or stool should immediately be reported to your health care team.
Follow-Up Care is Important
Regular medical care is important after prostate cancer treatment.
Be sure to:
- Keep all recommended follow-up appointments.
- Have PSA tests as advised by your healthcare provider.
- Stay up-to-date with recommended cancer screening tests, such as colorectal cancer screening.
- Tell your healthcare provider about any new or concerning symptoms, such as blood in your urine, ongoing pain, or unexplained weight loss.