Get a Second Opinion from a Doctor Who Sees a Lot of Bladder Cancer
Patients are often advised – from a multitude of sources – to get second opinions. This is especially true with regard to cancer. Many times, I have heard patients protest this advice with “but I like and trust my doctor.” This is a valid protest. But I want to explore why — no matter how much you like and/or trust your doctor — you should still get a second opinion after receiving a bladder cancer diagnosis.
Bladder cancer is not as common as other cancers
Bladder cancer is not rare. But prostate cancer is more common. The National Cancer Institute’s (NCI) database on cancer statistics estimates that in 2018, there will be 81,190 new cases of bladder cancer. In comparison, the database estimates there will be 164,690 cases of prostate cancer. Urologists (who treat both prostate and bladder cancer) may have more experience treating prostate cancer simply because they see more cases of it.
No new bladder cancer treatments in over 30 years
Bladder cancer has, in a sense, been a forgotten cancer until very recently. When my first husband was diagnosed with metastatic bladder cancer in 2013, I asked our primary care doctor why I couldn’t find more information about it online. She very cynically (but very accurately) replied, “You can’t build a career on bladder cancer.” Thankfully, this is changing.
From 1978 until 2016, there were no new drugs approved by the Food and Drug Administration (FDA) as bladder cancer treatments. As a result, there wasn’t much research happening in bladder cancer. Many urological conferences and research focused on prostate cancer. As a result, many urologists’ attention was focused on prostate cancer. The Bladder Cancer Advocacy Network (BCAN) has helped to change that in recent years by creating a funding pipeline for bladder cancer research. BCAN awards research grants to young investigators focusing on bladder cancer. This is making it possible to build a career on bladder cancer.
How does this relate to second opinions?
Urologists at academic centers and NCI facilities are typically attuned to the latest research developments and clinical trials in bladder cancer. Such facilities also tend to have separate urologic oncology departments. Those departments tend to have specialists who treat only bladder cancer.
Finding an experienced doctor
In contrast, at a community health center, a general urologist may refer a patient to a general medical oncologist. This could be fine but these doctors may be treating patients who have a range of cancers (breast, lung, prostate). And these doctors may not be up to speed on the many bladder cancer treatment developments since 2016. Even for early-stage bladder cancer, clinical trials are underway to combine BCG with immunotherapy drugs. You want to find doctors who specialize in bladder cancer and are aware of the latest research and clinical trials.
A patient recently told me that he almost had his radical cystectomy performed by a certain doctor…until he learned that doctor performed about three per year. He went to an academic medical center and ended up with a doctor who performed three per week. You want a doctor with lots of experience in your particular problem. And it is OK to ask them how much experience they have treating patients with your particular problem.
What is there to lose?
What do you lose by getting a second opinion? You lose some time. And you may lose some money, especially if you have to pay out of pocket for a second opinion. (Check with your health insurance; many plans cover a second opinion.) If you receive the same diagnosis and treatment recommendation as from your first doctor, that will validate your first opinion. You will gain peace of mind. If you receive a different diagnosis or treatment recommendation, that will give you pause. You are receiving differing information from a doctor who sees a lot more bladder cancer. Wouldn’t you want to know that information sooner rather than later?
Have your views towards bladder removal changed since you were diagnosed?