Not Knowing What You Don't Know

In my experience, bladder cancer is simply exquisite in presenting patients and caregivers with new challenges, twists, and turns. I constantly looked back and realized how helpful it would have been to have known certain things in advance. The trouble is, the stuff you need to know is specific to your particular situation But I hope that through forums like, patients and caregivers can seek out others who are similarly situated and learn from them.

We come to bladder cancer as newbies

I think our bladder cancer experiences might have been more tolerable had we known certain things early on. Nearly all of us come to bladder cancer as newbies, unless we’re unfortunate enough to have known someone else well who also had bladder cancer.

Pieces of information - big and small- that I wish I had

I believe that the Internet and forums like are so valuable to patients and caregivers for this reason. I understand why doctors sometimes worry when their patients do a lot of online research. But in my experience, it is the seemingly small tips from other patients and caregivers that prove most valuable day-to-day. Online forums provide connections to useful resources but most importantly, they connect newbies to people who have been down a similar path already.

Some specific things I wish I’d known sooner

When my first husband was diagnosed with metastatic bladder cancer, it seemed a nonstop stream of challenges came our way that confounded us and complicated our lives. In no particular order, here are some things I wish we’d known sooner:

1. Swelling

Swelling can be caused by a tumor pressing on a vein or by a blood clot.

2. How showers and blood clots

A hot shower can cause a blood clot to go to the lungs as a pulmonary embolism. A pulmonary embolism can kill a person very abruptly. Therefore, if you suspect the possibility of a blood clot, be cautious of hot showers.

3. Hot water and pain medication

The efficacy of a Fentanyl patch for pain can be greatly impacted by a hot shower. Direct hot water on a patch can increase the release of the medicine, thereby making it stronger in the short term but weaker with regard to its intended duration of three or so days.

4. Medications and managing constipation

The right anti-nausea drug can be immensely helping in stemming nausea from chemotherapy but it can also cause severe constipation. This can be exacerbated if the patient is also on opioids for pain management. An anti-constipation regimen started in conjunction with pain meds/chemo can prevent constipation and its associated pain. A simple daily laxative and stool softener taken consistently can entirely prevent these problems and keep the patient far more comfortable.

5. Blood transfusions

Chemotherapy can result in the need for blood transfusions because the patient’s hemoglobin levels may get too low. Getting a transfusion can be all-day activity even if it’s only one or two units of blood that are being transfused. Every transfusion requires a “blood type and cross” check within 24 hours of the infusion. I once thought we were being “efficient” in getting the type and cross 48 hours ahead of time because we happened to be at the clinic for something else. Because there was a standing order in the system, no one told us that my husband would have to do another type and check within 24 hours of the infusion. This resulted in my poor husband having to have two blood draws instead of one prior to the transfusion. Every transfusion also requires that a patient stays at the clinic for a while afterward to ensure there isn’t a negative reaction.

5. Treatment changes

Just because a treatment is working now does not mean it will continue to work. This was a rude awakening and something I simply didn’t understand about cancer at the outset. I think it is one of cancer’s cruelest realities. We were constantly hustling to figure out what the next treatment might be. I didn’t understand in the beginning that such a hustle would be needed.

What were your "unknowns"?

Those are some examples specific to our experience. I hope maybe some of these might help someone new to metastatic disease. What are your best (or should I say worst) “unknowns” specific to your bladder cancer experience?

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