There was a time when the paternalistic relationship of the oncologist being in charge of making all decisions regarding the diagnosis and treatment of prostate cancer, was expected and followed. Today, cancer care has thankfully changed. No longer is the patient relegated to feeling powerless by simply doing whatever was asked of them, even if it didn’t seem right.
Today, cancer patients are encouraged to become a “self-advocate.” Unsurprisingly, this concept has become a welcomed part of empowering all cancer patients in their care and treatment. Self-advocacy means taking an active role along with the medical team of shared decision making, listening, asking questions, and learning to be a team player with every medical professional involved in your healthcare.
This means that all cancer patients, including men with prostate cancer, are at the helm, alongside their doctor in making healthcare decisions regarding their disease. Self-advocating has also been shown that when combined with prostate cancer peer support groups, it enhances and brings awareness to the “patient’s voice” in participating in joint decision-making in their care and treatment.
Steps to self-advocating for prostate cancer
- Work as a team member with your doctor
First and foremost, prostate cancer self-advocacy never involves having an adversarial relationship with your doctor. Instead, it means seeing yourself as a full team member (remember, you’re the patient) in a working partnership that revolves around the goal of devising the best treatment plan for you. It requires you to listen, learn, ask questions, respectfully speak your mind voicing your ideas/opinions, suggest alternatives, and to trust the healthcare professionals on your team.
- Learn all about prostate cancer
Once you see yourself as a full team member, your next step is learning all you can about prostate cancer. Here are steps to take:
- Ask questions
- Consider getting a second opinion. Most doctors often encourage second opinions. If they disagree, you may need to seek another doctor for your care.
- Ask for and review all test results, outside consultations with other doctors, and medical records of all appointments. Keep this information in a binder or scan documents for your records.
- Keep a daily or at least a weekly journal of your cancer journey. Write down significant dates of treatments, any side effects, how you feel emotionally and physically, appointment dates, and have a record of each doctor on your team of their name, phone number and their particular specialty. This can come in very handy in the future whenever you have certain questions or need certain information.
- Consider joining a cancer support group that meets in-person or joining an online prostate cancer community.
- Read reliable books, journals or online information on prostate cancer.
- When looking for online information on prostate cancer, check the URL. If it ends with .gov, .org, or .edu, is usually more reliable than a site ending in .com. Check the credentials of the writer – are they are medical professional? Has the article been reviewed by a healthcare provider or medical review board? Are there links to further information that dives into the subject in greater detail? The more you know, the better your understanding of how to advocate for yourself.
- How to make good medical decisions
At the time of your diagnosis, you likely were overwhelmed and shocked. It’s during those times that making sound medical decisions can be difficult. Just because you are self-advocating does not mean your family or a significant other will be excluded from the conversation of your medical care. In fact, having a supportive family or friend by your side, can be your best ally in making the best decisions.
When faced with making a medical decision, it helps to take your time. Most cancer treatment decisions are usually not urgent allowing you a few days or weeks to analyze your choices.
Discuss with others about the choices you are considering for input. While their input can be valuable, the ultimate decision is up to you. If the decision does not seem right, don’t be pressured into choosing that one.
Always weigh the pros and cons of every decision. Review the efficacy of a treatment, the side effects, risks, what your insurance will cover, and will you need to travel to a facility far from your home requiring time off from work or other family responsibilities.
- Learn to advocate with your health insurance policy
It’s one thing to self-advocate when working with your healthcare team, but it’s another when advocating with your medical insurance coverage.
The number of insurance plans is vast, each with their own limits of hospitals/doctors and treatments they will cover or not. Read through your policy and discuss with an agent any questions you may have regarding coverage for your medical expenses. Medical insurance can be quite complex and if you don’t understand something, always ask.
Having your health insurance company deny a needed medical treatment or medication, is frustrating. But you are not completely helpless. Advocate for yourself by checking out these tips on how to fight an insurance claim denial.
- Surround yourself family and connect with others
Living with prostate cancer can be isolating. But it doesn’t have to be. To encourage emotional support, one last self-advocate step critical for fighting back this disease is to surround yourself with family, friends, and others connected with the prostate cancer community.
Just connecting with other men with prostate cancer can be helpful for sharing their experiences. What may work for one man may not for another, but at least there is a sharing of ideas that could prove helpful in the future.