Two distinct sets of medical information, charts, and notes spread out across a table; an arm holding a sheet with one doctor's handwritten notes is visible

3 Things to Do Right After You Are Diagnosed with Bladder Cancer

Receiving a bladder cancer diagnosis is terrifying. Most patients and caregivers can tell you some version of a story of listening to a doctor tell them this news. While they were hearing the words, their mind was spinning crazily. They heard the words but they weren’t really listening.

Understand your specific diagnosis

Clarify your exact diagnosis and obtain copies of all the relevant diagnostic reports. The volume of information that comes at you with a diagnosis is daunting. This is why it’s crucial that you obtain copies of all relevant diagnostic reports: cystoscopy, blood work, CT scans, and PET scans.

You can review these at your own pace in your home. You can look up terms and unfamiliar words. You can research specific terms. You can absorb it slowly. And you can become well-versed in the specifics before the next time you see a doctor.

The crucial pieces of information you need to know are:

  1. Specific type of bladder cancer: is it transitional cell carcinoma? Is it small cell? Is it carcinoma in situ (CIS)?
  2. Stage: ranging from Stage 0 to Stage IV (from non-muscle invasive to metastatic)
  3. Grade: high or low. (Grade used to be rated as 1, 2, or 3 and you might still hear this but generally used now, is high or low grade.)

Arrange a second opinion at an NCI-designated facility near you

The National Cancer Institute (NCI) website explains the cancer centers program:

“The NCI Cancer Centers Program was created as part of the National Cancer Act of 1971 and is one of the anchors of the nation’s cancer research effort. Through this program, NCI recognizes centers around the country that meet rigorous standards for transdisciplinary, state-of-the-art research focused on developing new and better approaches to preventing, diagnosing, and treating cancer.”

These are the cutting-edge cancer treatment centers in the country. They have an entire department devoted solely to urologic oncology with specialists that treat a lot of bladder cancer. You can find one near you here.

You want an opinion from one of these centers. These doctors are experts in bladder cancer and are familiar with cutting-edge research. And the bladder cancer research landscape has evolved rapidly. Even if it is not close to your home, you can still get an opinion and the recommended treatment could potentially be provided by a doctor closer to your home.

Getting a second opinion is worth it

It will likely be a pain and a hassle to arrange such an opinion. It will likely cost you time and money. But it is worth it. This is your life and you have been told you have cancer. You want the best experts giving you their best advice on how to save your life.

Don’t get caught up about the idea that getting a second opinion is somehow offensive to your doctor. It’s not. This is your life and well-being hanging in the balance. Doctors understand the desire for second opinions. Any doctor who does not is not a doctor I would want treating me.

Arrange a second opinion on your pathology

It is also worth getting a second opinion on your pathology report. That report is the basis of your diagnosis upon which your treatment plan is based. I recently wrote an article about pathology and you can learn more here, including how to get a second opinion.

It is work but it’s worth it

I recognize that all of this sounds like a lot of work. And it is. But I am telling you what I did later rather than sooner, and I wish I had done things differently. My husband with metastatic bladder cancer didn’t get to an NCI-facility until later in his trajectory. And that was too late. Please learn from my mistakes and endure the hassle. You want to forever feel that you did everything you could.

In Part Two, I will give you some key questions to ask your doctors and in Part Three, I will address building your care teams.

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