What To Do When You Get The Worst Possible Bladder Cancer Diagnosis

“The tumor board agreed unanimously that surgery is not an option,” the urologist told us.

He didn’t make much eye contact so we understood that this was bad news but it was difficult to know how bad.

When my first husband received a metastatic bladder cancer diagnosis, I didn’t know anything about the stages of cancer. I didn’t understand until I did a lot of reading on my own that the cure rate of Stage IV bladder cancer was quite low. Or that the median lifespan was about 14 months.

This was before immunotherapies were available. And genomic sequencing was just starting. In 2013, platinum-based chemo was the standard of care. If that didn’t work, doctors typically guessed at a chemo combination and tried it.

Getting a stage IV diagnosis hurts – badly

Receiving a Stage IV diagnosis feels like being punched. If you get this terrible news, first, take a deep breath. Try to stay calm and do what’s in front of you in the moment. Keep in mind that immunotherapies are working miracles for some people. There are far more options than there were just two years ago.

But you don’t have to pretend that everything is great. I know this is easier said than done because my first instinct was denial and deferral. (If I don’t make a big deal of it, maybe it won’t be real.) But this is big news. This is news that turns your emotional world upside down and could soon turn your outer world upside down, too. Ask for help, let people know how you’re really doing. They are often empathetic and want to help. But they can’t help if they don’t know there’s problem.

Stay hopeful but also recognize reality

Stay hopeful. It can only help you to feel better moment to moment. But don’t allow yourself blind hope. Recognize you have a serious illness. Set up an advanced directive if you don’t have one, prepare your will if you haven’t already. This isn’t morbid, it is good financial planning and a way to care for your family. Sick or well, this kind of planning is a good idea.

Accept the good and bad news along the way

You will likely get some good results from treatment and the cancer will disappear or remain stable for a while. This is terrific and you should savor it and enjoy life.

Recognize, though, that bladder cancer tends to mutate and become resistant to a treatment that previously worked. This means you must stay one step ahead. Think about and research what the next treatment option may be. Hopefully, you won’t need it for a long time, if ever. But you will be ready in case you do.

Cancer keeps us aware that we are alive and constantly changing. Your needs and your state of health are likely to change as the disease progresses. This is incredibly difficult if it limits your ability to do things you enjoy. Keep a list of the activities you enjoy that you can still do. Maybe you will also discover new activities. My husband took up painting when he couldn’t go jogging anymore.

Wondering about how much time you have left

It is also incredibly difficult to wonder how much time you have left. This is the nagging, gnawing, overarching question that will intrude upon your thoughts everyday.

I found comfort in the realization that none of us knows how much time we have left. We only start wondering exactly how long we have left to live when we receive a terminal diagnosis. But the reality is, sick or well, anything could happen to any of us on any given day.

This helped us both to embrace the idea that we must live now. Enjoy the here and now. This is easier to do when you don’t have a terminal diagnosis looming but it is more crucial than ever when you have received a diagnosed. No matter our state of health or our prognosis, life is lived moment by moment.