What Would The Non-Survivors Tell Us?

We hear a lot from bladder cancer survivors — about their stories, their recommendations, their fears, and their triumphs over cancer. But what about the people who don’t survive? The nearly 18,000 people who died from bladder cancer in 2019?

What would they tell us, if they could, based on their experience? I think often about this. I lost my husband to bladder cancer in 2014. What would he say? The following are a few things I think they would tell us.

Take initial symptoms seriously

Whether it’s blood in the urine or recurrent UTIs, take unusual symptoms seriously right away. Do not dawdle in getting checked out. And problematic urinary symptoms should always be evaluated by a urologist. Urologists are the experts who can distinguish bladder cancer from a less serious condition. It is easy to disregard an unusual symptom as a fluke and delay seeking care. Those who have lost their lives to bladder cancer would say “don’t.”

Get a second opinion

Regardless of your opinion about and your confidence in the doctor who gives you your first diagnosis, get a second opinion. And, make sure that opinion is from a doctor with lots of experience in treating bladder cancer (this is crucial). You have nothing to lose in doing this and possibly something to gain.

Prioritize saving your life over saving your bladder

One of the most difficult decisions facing many bladder cancer patients is whether—and when—to have their bladder surgically removed. I hope that we are slowly moving towards a world in which there are more (and less severe) options for patients. But in the meantime, I think those who have died from bladder cancer would urge you towards the surgery if it is a reasonable option in your case. I have witnessed many patients who become determined not to lose their bladder at any cost. The problem, though, is that sometimes the cost can be their life.

Remember — sick or well — your fate can change

You may have felt hopeless when first diagnosed but now find that your bladder cancer is under control. Conversely, you may have had many years of low-grade cancer that suddenly became high grade. Either way, most bladder cancer patients recognize that their fate can change, and suddenly. This is true for any of us but cancer patients are most acutely aware of this. I think those who have died from bladder cancer would advise us: live your life well because every day matters.

Get your affairs in order

This is good advice, sick or well. But it is crucial for anyone who has received a cancer diagnosis. As a caregiver left behind, I can assure you that the solid planning my husband and I did was immensely helpful to me after he was gone. It is something that people often tend to dismiss as depressing “details” that will “work themselves out” but planning is crucial to ensuring that happens.

These details are crucial

Ensuring that you have a will and/or trust, that you have the appropriate power of attorney documents in place (for finances, health care, etc.), and that accounts are titled appropriately and/or have the correct person as beneficiary...these are crucial details. When a spouse dies, if an account is in his or her name only, you cannot access it at all without a death certificate, which can take time to obtain. But if you are the “transfer upon death” beneficiary, you will have immediate access to the funds. Or, if the account is jointly titled with your name, you will also have access. Those who have died would urge you to revisit these details when life is relatively calm. It is one of the best favors you can do for your family.

Let the important people know how important they are

And, finally, I believe those we have lost to bladder cancer would tell us to tell those we love how important they are to us. You can’t say it enough.