Knowing how to advocate for yourself when it comes to your health is an important skill.
This may be particularly true for Black men, as research suggests doctors are less likely to offer them cutting-edge therapies. One study found that African American men with advanced prostate cancer are 24% less likely to be prescribed a treatment known as novel hormonal therapy.
Practice shared decision-making – and get the best care – with these tips.
Communicate With Your Doctor
It may be hard to talk openly about cancer treatment, especially if you’re feeling scared or overwhelmed. But conversations with your doctor are a two-way street. The good news is that living well with advanced prostate cancer is possible for most. Here are some questions you may want to ask them:
- Where has my prostate cancer spread?
- What is my PSA level? How much has it risen over the years?
- What is my Gleason score? How does it affect my treatment options?
- Are there additional tests that can help guide treatment decisions?
- What are my treatment options at this stage? What are the side effects?
- Are there treatments for incontinence or sexual problems like erectile dysfunction (ED)?
- Are there lifestyle steps I can take that may improve my treatment response?
- Should I join a clinical trial?
You can also try the CDC’s virtual conversation tool to help you get ready to talk about treatment options.
Put the Right People on Your Care Team
A urologist is usually the one who diagnoses prostate cancer. That’s a doctor who specializes in the diagnosis and treatment of conditions of both the male reproductive system and the urinary tract. But there are other medical professionals you may want to involve in your cancer care. These include:
- A radiation oncologist if you opt for radiation therapy.
- A medical oncologist if you decide to get chemotherapy, hormonal therapy, or immunotherapy.
- An oncology social worker, who can share resources for things like financial aid and support groups.
- A palliative care doctor to help ease prostate cancer symptoms, such as frequent peeing or sexual problems.
- A physical therapist to show you pelvic floor exercises to help treat or ward off sexual problems.
- A nurse or patient navigator to help guide you through treatment and serve as an advocate.
- A mental health professional to help you manage your feelings about advanced prostate cancer diagnosis and treatment.
You may want to get a second opinion, either before or while assembling your care team. That can give you a better understanding of treatment options so you feel more comfortable with your final decision. Some insurance carriers require a second opinion before they agree to pay for cancer treatment. You can ask your urologist, oncologist, or even your primary care provider to recommend someone.
Practice Shared Decision Making
Your medical providers will want to know your thoughts on their suggested treatment plan. That’s where shared decision making comes in. This is a process where you work closely with doctors to determine your plan of care.
Shared decision making focuses on more than just treatment: It takes into account your values, goals, and concerns. For example, you may be nervous about certain therapies if they’ll significantly impact your quality of life. It’s important that you’re comfortable with all possible risks and benefits.
Part of shared decision making means regular communication with your medical team. You want to make sure you are up to date and understand as much as possible about your cancer prognosis and treatment. To do this, it’s a good idea to:
Ask all your treatment questions before you begin. Even if you think you know the answer, it doesn’t hurt to bring it up again. This includes what to look for with side effects and how to treat them.
Make sure you understand everything your cancer care team tells you. If you’re confused or you forget, ask them to explain it again.
Figure out how information will be shared. You usually see many different medical providers when you have advanced prostate cancer. You’ll want to know how they’ll communicate with each other and with you.
Know the best way to reach members of your cancer care team. You’ll want their office phone numbers, as well as how to get in contact with them if there’s an emergency. You may be able to reach them through an online patient portal, too.
Face the Finances
If you’re diagnosed with advanced prostate cancer, your treatment costs will be about $31,000 dollars a year, according to a 2023 study published in the journal Urology Practice. While health insurance will cover some of it, you will be responsible for any out-of-pocket costs. These can really add up.
The good news is that there are organizations and programs to help with cancer-related costs. Your hospital or cancer center may have a social worker on staff who can help you talk to your insurance company and connect you to helpful community resources.
If you’re unable to work, you may also qualify for Social Security Disability Insurance (SSDI). You can apply for it here or call 800-772-1213 to make an appointment at your local Social Security office. There are also organizations that provide help for cancer-related expenses. They include:
Pharmaceutical Research and Manufacturers of America (PhRMA)
Website: www.medicineassistancetool.org
They have a Medicine Assistance Tool (MAT) to help you search for patient assistance resources from different groups.
NeedyMeds Inc.
Website: www.needymeds.org
Toll-free number: 800-503-6897
NeedyMeds provides information about drug assistance programs. They also have their own drug discount card.
Patient Access Network Foundation (PANF)
Website: www.panfoundation.org
Toll-free number: 866-316-7263
PANF helps patients cover out-of-pocket cancer costs.
Patient Advocate Foundation (PAF)
Website: www.patientadvocate.org
Toll-free number: 800-532-5274
PAF will provide direct financial support to patients by paying out-of-pocket costs.
Connect With Others
Prostate cancer peer groups are a good way to find support. It’s helpful to connect with people who understand what you’re going through. You can learn what did and didn’t work for them, as well as share information about new treatments or clinical trials.
Ask your doctor, social worker, or patient navigator if they can connect you with a local support group. Other options include CancerCare, the Prostate Cancer Foundation, and Zero Prostate Cancer. Other organizations, like MaleCare, offer not just an advanced prostate cancer support group but also one for patients with treatment side effects.
Some prostate cancer organizations also offer mentor programs. That’s when you’re matched with another patient who has faced similar challenges. You can also apply to become a mentor yourself, to support new patients. Zero Prostate Cancer offers a program, as does Imerman Angels.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
American Cancer Society: “Understanding Your Options and Making Treatment Decisions,” “Financial Hardship,” “Social Security Disability Insurance for People with Cancer.”
Cancer: “Racial Disparities in Black Men with Prostate Cancer: A Literature Review.”
Center to Advance Palliative Care: “Palliative Care and Prostate Cancer.”
JAMA Network Open: “Trends in Incidence of Metastatic Prostate Cancer in the US,” “Racial and Ethnic Disparities in use of Novel Hormonal Therapy Agents in Patients With Prostate Cancer.”
National Cancer Institute: “Shared Decision Making.”
Prostate Cancer Foundation: “Diagnosed with Prostate Cancer: Questions to Ask Your Doctor.”
Urology Practice: “The Cost of Metastatic Prostate Cancer in the United States.”
ZERO Prostate Cancer: “Choosing Your Healthcare Team and Second Opinions.”
