My Mom Is Having A Radical Cystectomy--Advice Please

Hello All,

I am in need of advice. My mom has been diagnosed with T2a - G3 bladder cancer and is scheduled for a radical cystectomy next month. I am trying to gain as much information as I can, however there are a few questions that I have.

1) Will the Dr. be able to determine if there is lymph node involvement prior to her radical cystectomy surgery? If so, how? Or will we have to wait for the pathology report after the surgery? Her Dr. has said that he does not suspect that it has spread.

2) My mom has chosen a neobladder as her first choice of reconstruction. What has been your experience with this choice?

3) She is scheduled for an addtional CT scan as a pre-op test. Shouldn't there be other tests as well, such as a PET scan or bone scan?

Thank you so much for any insight/advice that you can offer..

Kristin

Hi Kristin,

My husband was diagnosed with an aggressive and invasive bc last July. The doctors deferred staging the cancer at that time, and said they would wait until after the radical prostectomy to do that. He was given a 20% survival rate past 5 years and a 25% survival rate if we pursued a treatment plan which included 4 rounds of chemo and a radical prostectomy in February, with a urinary rediversion of an indiana pouch. He is doing great except that he fatigues easily.

Here's my 2 cents: Continue to research the internet for information. Write back if you want some good sites/ studies to read. I built a small library of research findings and resources.

I think that the radical cystectomy in women includes removal of the uterus. Sometimes patients don't understand that. During our pre-op discussion the urologist told us that it was possible that he would find a mestatic cancer that had spread, which the ct scan had missed. That was the worst case scenario, but it was a shock to hear.

My husband's cx had spread to the lymph nodes and we knew that because of a ct scan. His nodes were removed. The pathology reports were negative. On the lymph nodes, the prostate, the bladder, everythiing.  The doctors credited the chemo and his ability to tolerate it, for his response.

 We didn't have any other scans such as a bone scan.

The highest ranked treatment appears to be chemo using gamzar/cisplatin followed by a radical cystectomy.

I hope I have addressed your primary questions, write back anytime. This was the most frightening experience of my life and I can only imagine how you might feel.

Your mom is fortunate to have a loving daughter.

all the best,

Elizabeth

Elizabeth,

Thank you for your kind words and advice. You truly brightened my day today. I'm glad to hear that your husband is doing great. I trust that he has adapted to his Indiana pouch well?

Yes, please, any websites and/or information that you recommend I read would be greatly appreciated.My mom would rather not learn about all of the details of her illness and surgery, and I totally respect that. In the meanwhile, I want to know as much as possible about what we are facing.

My biggest fear right now is of the unknown...in your opinion is it unrealistic of me to speculate that my mom may go into surgery and then after the pathology report be told that it is worse than we thought? I assume that is why the pre-op testing is done? She is not having any treatment done prior to her surgery, other than a dose of chemo when she had her tumor removed. I live in a different state (Florida) so I missed her initial appointment with the Dr. here in Ohio so I don't have all the answers that I would like. I am in Ohio now with her and plan to be so for the duration of surgery and recovery. I am thinking positively, but want to be prepared for anything that may come our way.I'm sure you understand what I mean...

Thank you again for you support!!!

Sincerely,

Kristin

Hi Kristen:

My husband didn't want to read anything either. He just decided that having a positive attitude was going to be his strategy and that if he avoided the data he would stay more positive. 

Me, I compulsively researched the internet and it was comforting to feel like I was accomplishing something.  Also, as time went by I was able to recognize things he was experiencing and tell him, which made him feel more 'normal.'

Here is a partial list of resources that may be of interest:

 National Cancer Institute, mednews

http://www.meb.uni-bonn.de/cancer.gov/CDR0000062908.html

(This is for health professionals and not for patients. I registered for access to everything I could and so long as they didn’t ask my degree, I got a subscription. This article is excellent.)

Bladder Cancer Web Café http://blcwebcafe.org/cystectomy.asp

Aurora Health Care http://www.aurorahealthcare.org/default.asp

Use the search feature for ‘cystectomy’

What is a radical cystectomy? University of Virginia  http://www.urologyofva.com/radical_cystectomy.htm

Cancer Net http://www.cancer.net/patient/Cancer+Types/Bladder+Cancer

University of Texas MD Anderson Cancer Center

http://www.mdanderson.org/care_centers/genito/display.cfm?id

This is a good article about the T definitions.

American Urology Foundation

http://www.auafoundation.org/auafhome.asp

As far as what to expect, the surgeon is still your best source of information. I hope you are going into the appointments with your mom. I held back my "what if" questions during our appointments and tried to let my husband set the tone for how much to learn. You might watch your mom and let her determine how much is discussed.

This disease is a constant experience of not knowing. No matter how much I read or learned, there was always something I wasn't prepared for. I coped with the unknown by focusing my attention on Phil and what he needed. The medicine schedule, the doctor appointments, the paperwork for the disability insurance, and so on, filled the time. He was sick with bladder infections and he was weak from the chemo so I moved in as close as I could and took care of him. That kind of intensity took away my need to find out what to be prepared for.

It also became a time of intimacy and love that was new to us. Everyone is unique in their responses to life's events but this experience was a closeness we had never known.

I am rambling. When is your mom's surgery?

fondly,

Elizabeth