Is there a universal right way to be a prostate cancer patient? In my experience, the news “you have prostate cancer” comes as a shake-up. When I have to deliver the news, I see shock, disappointment, dismay, sorrow and other emotions in the faces of my patients. No matter how fleeting these involuntary nonverbal signals may be, they are there. I believe this response to be universal.
In the aftermath, however, each patient and his loved ones will shape their cancer journey in ways that are unique to them. While there is no single “right” road for PCa patients, some roads are better than others. This includes becoming an empowered member of your PCa team, since the ultimate authority over your body is you, not your doctor. Navigating through information-gathering, weighing choices, making decisions, going through treatment and recovering from it, may require additional support. Patients can turn to national programs such as Prostate Cancer Foundation. Such resources are easy to find online. Yet, there’s another great resource that most patients are unaware of: The National Comprehensive Cancer Network (NCCN).
NCCN guidelines for PCa patients
The NCCN is a powerhouse of information, but it is not for just prostate cancer (PCa). Because of this, it may not pop up when PCa patients enter prostate-specific search terms in their browsers. What makes them a mighty resource as newly-diagnosed cancer patients/families take their first steps into a new and unfamiliar landscape is the clinical consensus behind the guidelines they create and continually update for both clinicians and patients. On the other hand, their member institutions tend to be clinically conservative, so it’s important to recognize that filter means that content changes come at a slower, more cautious pace. Their website describes NCCN as a
“not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. … NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.”
NCCN’s 82-page Guidelines for Patients: Prostate Cancer: Early Stage is available as a pdf at their website section for patients. The explanations of prostate cancer and its stages are very good. A cautionary note: their diagnostic and treatment content is drawn from conservative conventional urologic standards of care, and does not yet include advances such as focal therapy and in-bore MRI-guided targeted biopsy. While we hope such progress will soon be incorporated into the document, we agree with NCCN’s wisdom on better ways to be a PCa patient.
For example, on page 15 the Guidelines offer the following tips regarding diagnostic tests:
- Bring someone with you to doctor visits, if possible.
- Write down questions and take notes during appointments. Don’t be afraid to ask your care team questions. Get to know your care team and help them get to know you.
- Get copies of blood tests, imaging results, and reports about the specific type of cancer you have.
- Organize your papers. Create files for insurance forms, medical records, and test results. You can do the same on your computer.
Keeping copies of your personal medical records—and not just for PCa, but all records—is just one way to practice being a more empowered PCa patient. At the Sperling Prostate Center, we strongly support patient education and empowerment, and we are happy to provide our patients with copies of the all their reports and records.
NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.