The Value of Second, Third, and Fourth Opinions
I have talked with too many patients and caregivers who hesitate to get a second opinion. Do not hesitate. Second, third, even fourth opinions are worth your time and hassle. You are not offending your doctor. Rather, you are doing your due diligence with regard to your health.
I believe that in America we spend more time researching cars before we buy them than we do researching doctors and treatments for cancer.
Local doctors vs. NCI-designated centers with bladder cancer experts
Many patients first receive their diagnosis from a local urologist in a community practice. Such doctors may be fantastic but, even so, it is to your benefit and helpful to your peace of mind in the long-term to get at least one other opinion. This is true at any stage of your disease. It is especially important if a radical cystectomy (RC) is recommended.
I talked recently with a patient for whom an RC was recommended. He was happy with his local doctor and planned for that doctor to do the surgery. But as he did more research and asked questions, he learned that his doctor performed only about 2 or 3 RCs per year, and few of them were neo-bladder surgeries (which he wanted).
He decided to travel a couple hours away to a National Cancer Institute (NCI)-Designated Cancer Center. There, he met a doctor who performed 2 or 3 RCs per week, many of them to create a neo-bladder. He opted to have his surgery with the more experienced doctor.
Bladder cancer is not rare – but it is less common than prostate cancer
The American Cancer Society estimates that there were about 161,000 new cases of prostate cancer diagnosed in 2017 and about 79,000 new cases of bladder cancer. Many local urologists have less experience with bladder cancer because it is less common. You want to be treated by a doctor who has treated many cases of bladder cancer and who treats it every day.
I have met patients who were both “downstaged” (the cancer had not spread as far they had initially been told) and “upstaged” (it was more serious than they were initially told) after they saw a doctor at an NCI-Designated Cancer Center. These centers are the backbone of cancer research in the United States and are the places where you will find doctors with the most experience in bladder cancer. This is what the NCI website states about such centers:
The NCI-Designated Cancer Centers are recognized for their scientific leadership, resources, and the depth and breadth of their research in basic, clinical, and/or population science. Comprehensive Cancer Centers demonstrate an added depth and breadth of research, as well as substantial transdisciplinary research that bridges these scientific areas. Basic Laboratory Cancer Centers conduct only laboratory research and do not provide patient treatment. There are 13 Cancer Centers, 49 Comprehensive Cancer Centers, and 7 Basic Laboratory Cancer Centers.
The hassles are worth it
Yes, there can be administrative hassles to seeking more opinions. Yes, your insurance may not cover it. Yes, it is time consuming. But you should do it anyway. Make the time, pay for the visit if you must.
Have you shared your bladder cancer story on BladderCancer.net?