Questions to Ask Your Health Care Team for Bladder Cancer

Possible Questions to Ask your Health Care Team

Regular communication is important in making informed decisions about your healthcare. As you educate yourself on your type of bladder cancer, you are going to have lots of questions. 

Write them down!!!

Many cancer patients have found it helpful to have a health journal, notebook, or binder to keep all of your information and questions in. It's easy to get trapped into thinking that you will remember the questions you have. But when you get in fromnt of the doctor, it's amazing how those questions don't come to mind.

Additionally, it can be helpful to bring someone along to your appointments to take notes. Between dealing with the shock of this diagnosis or having rain fog from cancer treatments, it's a good idea to bring some backup to help you understand and sort out all this information.

The following list of questions might be helpful to bring with you to your doctors appointments.

General Questions: 

🟪   How many patients have you treatment with bladder cancer?

🟪  What are the next few steps in our treatment plan? 

🟪  What is a TURBT? What are the risks and benefits of this procedure? Click here for more info.

🟪  How long does the surgery take? Is it outpatient or inpatient?

🟪  What can I expect after a TURBT?

🟪  Can I get a copy of my pathology report? 

🟪  How do you feel about me getting a second opinion? 

🟪  Can you please write down any words I don't know or understand?

🟪  Can you explain my pathology report (laboratory test results) to me?

🟪  What type of bladder cancer do I have?

🟪  What stage, and grade is the bladder cancer? What does this mean? Click here for more information. 

🟪  How rare is this type of cancer? 

🟪  What is my prognosis? 

🟪  Is the cancer invasive? If it is, what layer of the bladder is it invading? Has it spread to the muscle?

🟪  Can you tell if it has spread to fatty tissue and/or lymph nodes?

 

🟪  How fast is this cancer growing? What can I expect with cancer growth based on my age, race, and health status?  

 

🟪  In general, how long will I be waiting to get surgery, get tests, and get results? Should I be worried? 

 

Treatment Options

🟪  Can you explain my treatment options?

🟪  Do I need more types of tests before determining treatment? Are they invasive? Risks and benefits? 

🟪  What treatment plan do you recommend? Why?

🟪  Can you give me a general overview of what the treatment will look like, how long it will last, and how often I will need tests and what those tests are?

🟪  What are the expected benefits of this treatment? What are the problems with this treatment?

🟪  What are treatments are available? What is the quality of life like for each treatment? 

🟪  How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

🟪  What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

🟪  Could this treatment affect my sex life? If so, how and for how long?

🟪  Will this treatment affect my ability to become pregnant or have children?

🟪  What short-term and long-term side effects may be associated with my cancer treatment?

🟪  Are there medications to help with these side effects? Will you prescribe them to me?  Click here for a list of common meds used to help with side effects of bladder cancer treatments.

🟪  Is immunotherapy an option? Would you recommend it for the type of cancer I have? Why or why not? 

🟪  Is BCG an option? If so what are the side effects, and quality of life and prognosis compared to cystectomy (removal of bladder)? 

🟪   If getting BCG - Are you able to get BCG with the current shortage? Will this affect my treatment plan? If so, how? What are the side effects? How long do I need to bleach my urine? Do I stay at your office for treatment? Do you use lidocaine before inserting the catheter? How long will the BCG stay in my bladder? If the BCG doesn't work, what are the next steps? Click here for more info on BCG and what treatment will be like.

🟪  Are you planning on doing a chemo wash after surgery? Why or why not?

🟪  Will I need more testing during treatment? What kind and why? How often? Ask about cystoscopy's, CT scan's, and PET Scans. Are they invasive? What are the risks and benefits? 

Bladder Removal (cystectomy) Questions

🟪   What will the quality of life be after a cystectomy?

🟪  What type of surgery do your recommend? Please click here for basic understanding and definitions of the different types. 

🟪  Will the surgery be through the abdomen or smaller incisions using a robot? What is recovery like for each? 

🟪   If radical cystectomy is performed, will they also do hysterectomy (prostatectomy for man)? Or any combination of them? 

 

🟪   Will I need a complete cystectomy or is a partial cystectomy an option? Why would I choose one over the other? What do you recommend? 

 

🟪   How long will the surgery take? 

 

🟪   Is there reconstructive surgery options?

🟪   Will I need to do chemotherapy and/or radiation before and/or after?  Why or why not?

 

🟪   What type of chemo would be needed? IM (intramuscular), IV (Intravenous), or oral? Will I need a port for the IV treatment?

 

🟪   What is the advantage and disadvantages of getting or not getting a port? Do you put that in for me? Is it a separate surgery? How long after surgery until I can use the port? How long is that surgery? What are the possible complications?

 

🟪  If chemotherapy is needed, for how long, and how many treatments?

 

🟪  What would not make me a candidate for chemotherapy?

 

🟪  Would cisplatin-based neoadjuvant chemotherapy be used prior to cystectomy? If so how does that work, how often and for how long? What are the side-effects of it?

 

🟪   Do you always take out the lymph nodes with this type of surgery, and if so will there be any side effects to doing that? 

 

🟪   Can you explain what an Indiana Pouch is, and if its an option? What are the pros and cons of choosing this surgery?

 

🟪   If I choose to get a neobladder, after surgery will I need to catheterize myself, or do I need to have a family member do it? If so, for how long or will I always need that?

 

🟪  With a neobladder, do you have to set a timer to remind yourself you need to empty your neobladder?

 

🟪  What does the first 3 months look like after bladder removal?

 

🟪  Do the urine bags leak, and if so, how do I fix that? 

 

🟪  What is the percentage of bladder cancer recurring after a radical cystectomy? Partial cystectomy? What are the survival rates given age and treatment given?

 

🟪   What does sleeping look like with the different types of surgeries? Do I have to set a timer to cath yself or go to the bathroom to use my neobladder, or do I use a larger bag for overnight?

Miscellaneous Questions

🟪  What clinical trials are available for me? Where are they located, and how do I find out more about them?

🟪  Who will be part of my treatment team, and what does each member do?

🟪  If I’m worried about managing the costs of cancer care, who can help me?

🟪  Where can I find emotional support for me and my family?

🟪  If I have a question or problem, who should I call?

Urine Cytology and Bladder Cancer

 

What is a Urine Cytology Test?

Urine cytology is a test to look for abnormal cells in your urine. It looks at the cells under a microscope. It's used with other tests and procedures to diagnose urinary tract cancers, most often bladder cancer.

Your doctor might recommend a urine cytology test if you have blood in your urine (hematuria).

For people who've been diagnosed with bladder cancer and have undergone treatment, a urine cytology test can help detect a recurrence.

Every time you have a cystoscopy (a scope of your bladder) you can expect that a urine cytology will be run as well. When your doctor is doing the cystoscopy they will spray saline in your bladder, pull out urine and spray it back in again. They will try and agitate the cells in the lining of the bladder. They want to get as many cells in the sample as possible, so if there are any cancer cells, it would be obvious to find them.  

Your doctor is doing this usually without you even realizing he/she is. It doesn't hurt at all, and it's done very quickly.

Why is it Done? 

Urine cytology is used with other tests and procedures to diagnose cancers of the urinary tract, including:

• Bladder cancer
• Kidney cancer
  
• Cancer of the ureter
• Cancer of the urethra

Urine cytology can best detect larger and more-aggressive urinary tract cancers. It might not detect small urinary tract cancers that grow more slowly.

What do the Test Results Mean? 

Because I've had so many cysto's I'm getting much better at understanding the results of a urine cytology. 

My latest one said:

"Negative for high-grade urothelial carcinoma. Urothelial cells without diagnostic abnormality." 

So it's saying that there are no cancer cells found that are high grade (also known as grade 3). Urothelial carcinoma is another name for stage 0 bladder cancer cells (called Ta or CIS). These cells are only found in the first layer, or lining of the bladder wall, called the urothelium layer or transitional epithelium. 

In other words this is saying it's clear, kind of.

Although the urine cytology was negative for high grade cancer cells, during the cystoscopy we found new tumors 😢 A 14 month battle with bladder cancer, and we have to start this whole thing over. I can't even begin to tell you how disappointing this is. 

My urologist oncologist, Dr. Liam McLeod, left a note about it in my patient portal "No high grade cancer cells  were found - it is possible your recurrence is low grade which does not show up well in cytology, we will know more when your pathology is back."

That is better news hopefully. The fact they didn't pick up high grade cells will hopefully mean that I don't have any high grade tumors growing, including CIS high grade tumors. My pathology will come back next week, and I'll find out more information. 

Another cytology result: 

"Negative for high-grade urothelial carcinoma. Urothelial cells with reactive features." 

What is reactive features? That sounds worrisome. My awesome doctor left me a note about this as well: " Reactive features means inflammation. No cancer in the urinary cells. Good news."

I love my doctor, and the fact that he takes the time to write a note with these results to help me understand them better. The inflammation in my bladder  is from all the BCG irritating the hell out of my bladder. That is totally normal and expected.  

This the the cytology result from the first cysto after doing BCG for 6 weeks. 

"Negative for high-grade urothelial carcinoma. Please see comment...... Comment:  Although no diagnostic abnormality is identified, the Paris System for Urinary Cytology Reporting establishes cellularity standards for instrumented urines to help minimize the risk of a false negative study. This sample falls below that cellularity standard. Repeat collection may be considered."

This one really threw me for a loop. The next time I went in to talk with Dr. McLeod I asked him if we needed to get a repeat cytology, because there were not enough cells in the sample. 

He told me this is a normal result, and really good news in fact. 

My urologist did a fellowship specializing in urology oncology. During that time he was part of a study that looked at urine cytology and CIS tumors. They wanted to know how accurate the test was in catching CIS tumor cells, especially after washing out the bladder, and removing all the urine in the bladder, and taking another sample. 

Meaning, there should be a lot less of any cancer cells in there, and maybe the test would not be able to catch them. 

The results were really interesting! He said they did 3 washes in the bladder with these patients that had a CIS tumor (high grade, stage 0 bladder cancer). ALL 3 washes showed cells in the urine cytology. 

So what does that mean? It means that these tests are REALLY awesome at picking up urology high grade cancer cells. 

So Dr. McLeod explained to me that we didn't need to repeat the test, because if they didn't find enough cells in the sample, and didn't find cancer cells, that means it was negative and it's great news! My bladder was still not very irritated at this point and was not shedding many normal cells.