When someone you love is diagnosed with advanced prostate cancer, you may find that you abruptly have to step up into the role of caregiver. Overnight, you’ve become an appointment organizer, financial advisor, and medical researcher. There’s also the most important role of all: provider of emotional support.
Caregivers are especially important for Black men, who experience higher death rates and more aggressive forms of prostate cancer. In fact, Black patients reported that caregivers were crucial to help them get through prostate cancer treatment, according to a 2019 study published in Health Promotion Practice.
But it can be tough to provide support to a loved one and try to cope with your own worries about his diagnosis. Here’s how you can be present for him – and take care of yourself, too.
Help Prepare for Appointments
As a caregiver, you may drive your loved one to doctor visits. Here’s how to prepare for them before you go.
Plan ahead. Make sure you have directions on how to get there before you get into the car, including where to park. Many hospitals and major medical centers have this information on their website. Otherwise, call ahead to ask.
Discuss expectations beforehand. Discuss with your loved one whether they want you to be present during the appointment. They may want an extra set of eyes and ears or ask you to take notes. But others want to see their doctor alone. It’s important to respect their choice.
Prepare a list of questions. Combine all the questions and concerns you and your loved one have and make a list. Topics may include:
- Management of treatment side effects
- Ongoing tests to monitor the disease
- Available support services
- Resources to cover cost of care
- Ways to maintain a good quality of life
Since your doctor may not have much time, rank the questions in order of importance.
Put together a notebook. It should include all the important information you and your loved one needs, such as:
- Doctor names and contact information
- Appointment dates, including any tests and scans
- Medication list
- Any medical or laboratory reports
- Mood or sleep changes
- Eating patterns
- Pain levels
Bring this to every health care provider visit.
Fill out consent forms. If you want to be able to speak to your loved one’s doctors, ask him to fill out a consent form at his doctor’s office. This way, his medical providers can share information with you about his prostate cancer, including his treatment, without him having to be present.
Help Manage Side Effects
Advanced prostate cancer treatments cause side effects. As a caregiver, it’s important to recognize and report them right away to a patient’s health care team. This way, your loved one can get help so that he can finish his treatment plan. Here’s what to look for with different treatments.
Hormone therapy. Many men with advanced prostate cancer take hormone therapy, which can cause:
- Hot flashes
- Osteoporosis
- Weight gain
- Anemia
- Fatigue
- Mood changes
- Sexual problems
Radiation therapy. Side effects include:
- Skin changes such as dryness, swelling, peeling, redness, and blistering. You’ll need to watch carefully for signs of infection.
- A burning sensation when they pee or have a bowel movement
- Changes in bowel habits
Chemotherapy. While it depends on the type and dose, look for:
- Hair loss
- Achiness
- Bruising or bleeding
- Memory problems
- Tingling in the hands and feet
Stay Informed
Make sure you know as much about your loved one’s treatment, side effects, and prognosis as possible. Research shows that the more informed a patient is, the better their outcome. There are also hundreds of clinical trials available. Ask your loved one’s health care team whether they think one might be a good fit. There are also tools online that can match you to a specific clinical trial. Go to Find a Clinical Trial | ZERO Prostate Cancer.
You may also at some point want to seek out a second opinion. It’s best to get it before they start prostate cancer treatment. But it’s OK to get one at any time. You can check with their insurance company to make sure it’s covered. The Prostate Cancer Foundation has a list of National Cancer Institute designated cancer centers at Treatment Centers | Prostate Cancer Foundation.
Be Practical
Your loved one will need help with daily activities, especially while they go through treatment. Some tips to keep in mind:
Always ask. Prostate cancer patients often need assistance with bathing or dressing. Make sure your loved one is comfortable with your help before you just jump in. They may prefer a paid helper, rather than a family member or friend. His medical provider can often connect you to local home health agencies to hire help.
Stay organized. Make sure you keep a schedule of all medical appointments. Also purchase a pill organizer at the drugstore. You can use it to sort your loved one’s medications by day of the week, as well as time of day. A medication reminder app may also help. They have been shown to help cancer patients remember to take their medications. One option is the Medisafe app.
Help with financial issues. Prostate cancer treatment can be expensive. Half of men with advanced prostate cancer report some level of financial hardship, according to a 2023 study published in the Journal of Urology. Your loved one may need help as they sort through bills. Some things you can do include:
- Review his insurance policy. Most insurance companies also have case managers to walk you through what is covered.
- Speak to a hospital social worker. They can direct you to any national or local programs that may provide financial aid, or emotional support. One good option is to call 211. They can help you with things like rental, mortgage or utilities assistance and also provide local caregiver resources.
- Reach out to drug assistance programs. Prostate cancer medications are often costly. You may be able to get some help if you contact the drug manufacturer directly. Groups like the PAN Foundation and the Patient Advocate Foundation Co-Pay Relief Program also offer financial assistance to make out-of-pocket treatment costs more affordable.
Provide Emotional Support
Your loved one may feel scared and overwhelmed by their advanced prostate cancer. They may be embarrassed by certain side effects, such as erection problems and incontinence. Communication becomes even more crucial during this time. Here are some ways to connect to your loved one:
- Tell them often how much you love and cherish them.
- Talk about hard topics. Your loved one may not want to talk about bedroom problems or their low libido. But if you are part of a couple, you’ll want to discuss intimacy. There are other ways to express love for one another, like kissing and cuddling. Your prostate cancer care team may be able to refer you to a sex therapist for guidance. You can also find one at the American Association of Sexuality Educators, Counselors and Therapists website.
- Let your loved one speak. Sometimes, the best support you can provide is simply to sit there and listen. Don’t jump in to offer advice or “cheerlead.” Allow him to feel that he has a safe space to unleash some of his emotions.
- Give some space. Your loved one may not want to always talk to you about his advanced prostate cancer. He may need some time alone to process his feelings. Let him do that. Remind him that you are always there if and when he wants to talk.
- Expect an occasional angry outburst. Some medications may temporarily alter your loved one’s mood. They may be more anxious or more irritable. If these symptoms last for more than a couple of weeks, speak to their doctor. Depression is very common among cancer patients.
- Find support groups. It will help both of you to speak to other patients with advanced prostate cancer and their caregivers. Your treatment center may be able to connect you to a local support group. Other options include CancerCare, the Prostate Cancer Foundation, and Zero Prostate Cancer.
- Respect their privacy. Family and friends may contact you about your loved one. Talk to them about how much information they want you to reveal. Group emails or texts may be the best way to keep others in the loop. You can also provide updates on a website such as CaringBridge.
Take Care of Yourself
Caregivers often find themselves last on their priority list. But you need to take care of yourself so that you can care for and support your loved one. These tips can help:
Get enough sleep. The CDC recommends all adults get at least seven hours of sleep each night. If you have trouble falling or staying asleep, talk to your doctor.
Eat the right foods. Keep healthy snacks handy for when you are on the run with your loved ones. Some good options include:
- Sliced fruit and vegetables
- Low-fat cheese
- Low-fat yogurt
- Pretzels
- Instant breakfast drinks
The Urologic Care Foundation also has a Living Healthy cookbook you can use to make meals the two of you can eat together.
Stay active. It’s important to follow CDC exercise guidelines of at least 150 minutes of moderate-intensity aerobic activity like brisk walking each week. It will keep you healthy and lower stress.
Remember your own checkups. Don’t put off routine doctor visits such as your annual physical. Stay up to date on health screenings, and take any needed medication daily.
Make time for just you. Do something that you enjoy for at least a short period of time each day. You can go for a walk with earphones, take a warm bath, or just read a book.
Keep a journal. If you jot down your thoughts, it can help you process them better.
Talk to a counselor. Even a chat with your loved one’s social worker can help you feel less alone. Another option is to join a cancer support group for caregivers.
Ask for help. Often family and friends want to pitch in but don’t quite know how. Ask them to provide respite care for an afternoon or run some errands. You can also use CaringBridge as a way to have people sign up for respite care or meal delivery.
Connect to Resources
There are many caregiver resources that will help you feel less alone. Some good ones for advanced prostate cancer include:
- ZeroProstateCancer. They also provide support groups specifically for female caregivers.
- CancerCare
- Prostate Cancer Foundation
- American Cancer Society
It’s not easy to be a caregiver. But you and your loved one together form a team. Together, you’ll be able to navigate advanced prostate cancer and guide one another along the way.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
211: “Caregiver Resources.”
American Cancer Society: “Depression.”
Cancer Care: “Caring For a Loved One with Prostate Cancer.”
CDC: “About Sleep and Your Heart Health,” “Physical Activity Basics.”
Health Promotion Practice: “The Role and Influence of Prostate Cancer Caregivers Across the Care Continuum.”
JCO Oncology Practice: “Use of a Smartphone Application to Promote Adherence to Oral Medications in Patients With Breast Cancer.”
Journal of Urology: “Coping Mechanisms for Financial Toxicity Among Patients with Metastatic Prostate Cancer: A Survey-Based Assessment.”
Life with Cancer: “Nutrition for Caregivers.”
Zero Prostate Cancer: “Caregiver Guide,” “Questions For Your Doctor: Advanced Prostate Cancer.”
