Your advanced prostate cancer diagnosis might make you feel as if you’ve lost control over your life. But taking an active role in your treatment could help you get back into the driver’s seat. Advocating for yourself can help you get the best care and feel more confident and hopeful along the way.
Take charge by speaking your mind, knowing your rights, learning about your condition, and asking for all the support you need.
Own Your Decision-Making Role
Your doctor has valuable knowledge, and they can help guide you to the right treatment. But your opinions matter, too. Making a treatment plan together with your doctor is called shared decision-making. The goal is to take your lifestyle, preferences, and values into account to create an approach that’s fit for you. Ask your doctor about shared decision-making to make sure you’re on the same page.
Be confident in your conversations with your doctor. Feel free to share your true thoughts and concerns about treatments, side effects, risks, and their impact on your day-to-day life.
Your doctor should explain the benefits and risks of all your treatment options. Ask about each treatment’s side effects, including their impact on your urinary, bowel, and sexual function.
Be clear with your doctor about your goals and priorities. Some topics to chat about could include:
- How you feel about traveling for treatment
- What activities are important to you
- What side effects you’re most concerned about
- What quality of life means to you
Always be honest with your doctor – don’t hold back, even on details that might be hard to talk about.
Most of the time, you won’t need to make decisions about treatment on the spot. You can get second and third opinions from other doctors. You can also talk to the family members or friends that you trust about your options to help you feel secure in your decisions.
Ask Good Questions
Be prepared with questions you’d like to cover at your appointments. Some follow-up questions to consider asking your doctor after you’ve been diagnosed include:
- Should I consider a clinical trial?
- Will you be working with any other experts about my care? Who?
- How many people of my race and age have you treated?
- How much will my treatment cost? What help can I get?
- What are the most common side effects of my treatment? How long will they last?
- Will you change my treatment if I have serious side effects?
You can take notes or ask if you can record your conversations to remember your doctor’s answers later.
Understand Your Rights
You have the right to accept or refuse the treatment your doctor recommends. You need to agree to receive any medical care. Sometimes you give consent just by filling a prescription or seeing a specialist. At other times, you’ll need to sign an informed consent form.
Doing so ensures your doctor gives you all the information about your treatment plan. The form should include the treatments and procedures the doctor recommends and all the possible risks and benefits. This is a legal document and allows your doctor to treat you. You may need to sign separate informed consent forms for each part of your treatment – like chemotherapy or surgery. You can also choose to have only part of the recommended treatment.
You can change your mind even after you’ve signed a consent form or started treatment. Talk to your doctor if this is the case for you. If you’re unable to make decisions about your care, you can allow for someone else to consent for you.
You also have other rights. Certain ones are protected by federal or state law. Hospitals or insurance plans outline some in their own patient bill of rights.
You have the right to:
- Access to your medical records
- Be treated with respect
- Refuse treatment
- Not be discriminated against in your care
Contact your hospital’s patient advocate if your rights are not respected. You can also contact your state’s health department for help. Make a complaint to the U.S. Department of Health and Human Services Office for Civil Rights if you’ve been discriminated against or if your privacy has been violated.
Get a Second Opinion
It’s important to treat your cancer quickly, but it’s usually OK to take some time to get a second opinion. That means going to a different doctor who will look at your test results and come up with a treatment plan. This plan may or may not be different from your first doctor’s approach. This is a common part of cancer care.
Check your health insurance policy about second opinions, including with providers who aren’t part of your plan. This will help you find out if there will be extra charges. Ask your doctor’s office to send your records, tests, and imaging scans to the second doctor’s office before your appointment. You can get a second opinion even if you’ve already started treatment.
Research Wisely
Understanding as much as you can about advanced prostate cancer will help you feel confident at the doctor’s office. Turn to trustworthy organizations for accurate information. Their websites are a good place to research treatment options, different types of testing, and information on clinical trials.
Some helpful sources include:
- National Comprehensive Cancer Network
- American Cancer Society
- Zero Prostate Cancer
- Prostate Cancer Foundation
- National Cancer Institute
If research is too upsetting or tiring for you right now, ask a friend or family member to handle it and share the key information with you.
Be wary of misinformation spread on social media. That can include bad information about treatments that haven’t been approved, false causes of prostate cancer, or advertisements that look like reliable medical sources. Research has found that inaccurate posts often get more likes and shares than accurate ones.
Make Sure Your Doctor Is a Good Fit
It should feel like your doctor is your teammate working with you on your treatment. They should be willing to answer all your questions and listen to your worries. Expect respectful communication.
If you’re frustrated or having an issue with your doctor, express your concerns to them directly. Try to be specific about what’s bothering you. If that doesn’t work, your regular doctor might be able to talk to your cancer doctor for you.
If you’re not comfortable, you can change doctors. Don’t worry about upsetting them.
See a doctor who specializes in prostate cancer if you can. They’ll be familiar with the latest research and treatments. Visit the Society of Urologic Oncology’s website to search for specialists in your area. Large cancer centers often have prostate cancer specialists.
Choose a doctor that accepts your health insurance or is a preferred provider.
Look Into Clinical Trials
Clinical trials are part of research studies that aim to find new treatments. If you join these trials, it means you can try new drugs, devices, or treatments before they’re approved by the FDA.
Each trial has its own criteria for joining. They may have requirements about your age, cancer stage, treatment, or health history. Trials are always free.
You may still receive standard cancer care from your doctor during the trial – the details depend on the study.
Ask your doctor about any clinical trials you may be a fit for. You can also search for them online at the National Cancer Institute’s website. New trials are available all the time.
Take Care of Your Mental Health
Cancer treatment can be emotionally and physically difficult. Tell your doctor if you’re feeling anxious, depressed, or are having problems sleeping. Take note if you start to lose interest in activities or feel unusually sad and worried. These feelings are common, but they can make your treatment harder, so ask for help.
Your doctor can recommend support groups, a therapist, or medication. Ask if your cancer center has patient navigators or social workers who can help.
Make time for meditation, exercise, and hobbies that reduce your stress.
Connect With Others
Talking with other people who have advanced prostate cancer can help you to feel supported and to get advice that could help you at the doctor’s office. In support groups, you can meet people at different stages of treatment and learn from them.
Your doctor’s office, hospital, or cancer center may offer support groups. If not, they can recommend some locally.
You can also try these websites for online support groups and mentorship:
- AnCan Foundation
- CanCare
- Cancer Hope Network
- Zero Prostate Cancer Us Too
- Imerman Angels
Choose online support groups that only reference evidence-based articles and websites.
Be Proactive About Your Finances
Prostate cancer treatment can be expensive. Try to find out what expenses to expect to make things more doable. It’s OK to ask your doctor how much your treatment will cost. Some questions to ask include:
- How long will my treatment last?
- How much will each phase of my treatment cost?
- Are there other treatment options that cost less?
- How much will my prescriptions cost?
- Will I need to stay in the hospital?
Find out what your insurance covers. Your plan will have a maximum amount you’ll pay out-of-pocket for the year. Make sure you know what doctors or hospitals are in your network and what you’ll need to pay for treatment out-of-network.
Tell your doctor if you need help with work or money. Ask to meet with a social worker and the financial services staff if you’re having trouble paying for your treatment or medication. It may be especially important to meet with them if you’ve lost your job or health insurance. Let them know if you need help getting to appointments or can’t pay for your basic needs like food or housing.
The American Cancer Society has programs to help with transportation and short-term housing near treatment.
Make an Advance Care Plan
Planning is important, even if your cancer is controlled and treatment is going well. Think about what you would want to happen if you became unable to make medical decisions for yourself. Advance care planning involves choosing what kind of care you want at the end of your life. Taking care of this early can lower stress during your treatment and lessen any fears you have for your family later on.
Start by talking with your doctor about your prognosis. Include your spouse, partner, or other important family members. Talk about your quality of life, the goal of your treatment, and when you might want to stop treatment.
Then, fill out an advance directive. This is a legal document that your doctors will follow if you’re too sick to make decisions. Give copies to all your doctors and your family. You can change the document at any time.
Involve Your Caregivers
Your personal support system is important as you deal with advanced prostate cancer. Invite a close friend or family member to come to your appointments to help advocate for you.
They can listen, ask questions, and take notes when you may feel overwhelmed. Ask for their help to keep track of your side effects, pain, or other symptoms in between visits. This will help you report back to your doctor. You may want to ask a caregiver to manage your insurance, pay bills for you, or make appointments while you’re in treatment.
Show Sources
Photo Credit: The Image Bank/Getty Images
SOURCES:
National Coalition for Cancer Survivorship: “Self-Advocacy.”
National Comprehensive Cancer Network: “NCCN Guidelines for Patients: Advanced-Stage Prostate Cancer.”
American Society of Clinical Oncology: “Shared Decision Making in the Care of Patients With Cancer.”
American Cancer Society: “Finding Care.”
American Cancer Society: “Informed Consent.”
National Library of Medicine: “Patient Rights.”
Zero Prostate Cancer: “Caregiver Guide.”
CA: A Cancer Journal for Clinicians: “Cancer Misinformation on Social Media.”
UCSF: “Guide to Coping with Prostate Cancer.”
American Cancer Society: “Cost of Cancer Care.”
