APCCC 19: Wishes From a Patient's Perspective
Wish #1: General Population Screening
Mr. Millman notes that it is important for both physicians and patients to raise public awareness and to educate the public regarding prostate cancer. He notes that in the many advocacy groups and men's health group sessions he attends, he is often amazed at the lack of prostate cancer awareness in the general population. In his opinion, he has never been worried about over-diagnosis, but that it is the responsibility of the physician to not over-treat these patients. As such, he wishes for improved utilization of active surveillance in appropriate low-risk individuals.
Wish #2: Treatment that is Targeted and Effective
Millman notes that it is important that the patient feels like they are undergoing specific treatment for their own disease. Indeed, targeted and“personalized” treatment is important to the patient. This should include moving the benefits of genetic/molecular research to the standard clinical setting in order for this benefit to be realized by all patients.
Wish #3: Help with Side Effects
Arguably the most important wish of patients according to Mr. Millman is the knowledge of the side effects of all treatment for a patient’s disease, whether these are for local or metastatic therapies. Furthermore, he wishes that these discussions and subsequent treatments will be managed by sympathetic specialists who are not only concerned about treatment efficacy but also therapy side-effects. Aside from the physical side effects of treatment, some of the most common discussions he has with patients and their families surround the psychological, cognitive and emotional side effects of treatments. These should not be taken likely and should be addressed with every patient.
Wish #4: A Smarter doctor/patient Relationship
Mr. Millman wishes that all physicians appropriately assess the patient, discussing with them in a shared decision making setting the benefit of treatment and weighing these options alongside the burden of treatment. He notes that quality of life is not uncommonly more important than overall survival for many long-term prostate cancer survivors, particularly as they get older. Mr. Millman wishes that physicians would encourage patient participation in their care, where appropriate, not just in the treatment decision making, but also in follow-up and management of side effects. He says it is also important for physicians to consider the psychological benefit of supplements in what he terms the “weird and wonderful”– if it isn’t hurting the patient and they feel like it may be of benefit, let them take/do what they think is beneficial!
Wish #5: Faster Implementation of Research/Trial Results
As mentioned above, Mr. Millman notes that life quality is more important to many survivors than overall survival time. He is happy that there has been a recent push for surrogate endpoints for OS (ie. metastasis-free survival), in that this will allow faster trial completion and ultimately moving therapies to the community and not just in the major academic centers.
Presented by: Robin Millman, Prostate Cancer Survivor, and Patient Advocate United Kingdom
Written by: Zachary Klaassen, MD, MSc–Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia Twitter:@zklaassen_md at the 2019 Advanced Prostate Cancer Consensus Conference (APCCC) #APCCC19, Aug 29 - 31, 2019 in Basel, Switzerland
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