Results of my 1st TURBT/Patholgy Diagnosis

Dear Jack and Sara Anne,

Thanks so much for the response, and for emphasizing the responsibility I have to myself in seeking out the best option for my cancer treatment. Moreover, that these decisions are mine to make and for me to live with.

You know, I am very thankful that I found all of you. Reading everyone's story, not only educates me on the bladder cancer journey, but it also makes me feel that I'm not alone in this.

Going to UCSF will be quite a trip, since Arcata is a five hour drive to San Francisco. We are asking ourselves, Can treatment be realistically done at such a distance? What happens when complications, even simple ones, happen? I think about when my catheter was removed and my groin muscles tightened up and I was left with excruciating pain. Who will I go to when UCSF is a five hour drive away? Would I check in at the local emergency room? Would my present urologist still want to be involved with my care?

I am guessing these concerns will need to be negotiated.......

Thanks for the clarity and support, Lee

Lee,

There is no disrespect in seeking a second opinion, or choosing one recommendation over another. All responsibility for decision making is on you, and all doctors expect that you understand and will carefully consider all available options. Where and with whom you will treat is your decision.

Your current doctor HAS recommended bladder-sparing treatment. Apparently, in her/his opinion, you are a good candidate for BCG treatment. A second opinion may support or disagree with that recommendation.

The 3 or 4 year BCG treatment plan you describe (Dr Lamm or SWOG protocol) has good studies as to effectiveness. If at any point the treatment is not working or stops working, it is then time to reconsider all options.

Bluelight is new. It is helpful in detecting cancer for some people. It provided no additional information for me.

*IF* you get the point of a RC, yes, you want someone who specializes in the procedure. It is not a procedure that my great local urologist would perform.

You need enough information or opinions to be comfortable in your choice of how to proceed. It can be a daunting task.

Best,
Jack

Dear Sara Anne,

I am feeling by your feedback that I should continue my bladder cancer treatment with my present urologist, instead of going to UCSF. I can see getting the intravesical Immunotherapy with BCG with my present urologist, since the procedure is not complicated (you just fill the bladder up with the BCG and let it sit). On the other hand, it's hard not to have my second second TURBT done at UCSF with their use of blue light cystoscopy and laser cutting technology.

Furthermore, if it gets to the point of getting a R/C, won't it be better getting it done at a facility that have surgeons doing RCs a lot and utilizing robotics?

Of course, all the fancy tools, such as blue light cystoscopy, could not be so much better than a skilled surgeon with skilled hands and/or a good eye. I am assuming the new technology is more precise and complete. Is my assumption wrong?

Am I overlooking something about my present urologist in my desire to go get treatment at UCSF?

Please advise, since I don't wish to be disrespectful to my urologist. I just want the best course of action to get rid of the cancer in my bladdder.

Much thanks, Lee

Dear Members,

I have received a diagnosis from pathology after my first TURBT, where my urologist took tissue samples and removed as much of the cancer in my bladder as he could. I have been classified as a T1, High Grade, bladder cancer patient. Although my bladder cancer is superficial (the cancer has not invaded the muscle layer), the cancer was extensive throughout my bladder. Below is the summary of my pathology report:

Pathology Final Diagnosis
====================

1. RIGHT ANTERIOR BLADDER, TRANSURETHRAL RESECTION:
- INVASIVE UROTHELIAL CARCINOMA, HIGH GRADE WITH GLANDULAR
DIFFERENTIATION.
- TUMOR INVADES LAMINA PROPRIA.
- MUSCULARIS PROPRIA NOT PRESENT.

2. LEFT POSTERIOR BLADDER WALL, TRANSURETHRAL RESECTION:
- INVASIVE UROTHELIAL CARCINOMA, HIGH GRADE WITH GLANDULAR
DIFFERENTIATION.
- TUMOR INVADES LAMINA PROPRIA.
- MUSCULARIS PROPRIA PRESENT AND UNINVOLVED.


My urologist went over my treatment options yesterday. He did not recommend any form of bladder preservation approaches, because of the extensive spread of the cancer and the use of radiation which will affect the surrounding organs, such as the intestines, kidneys, liver, etc.

He did, however, recommended another TURBT with Mitomycin-C and a series of intravesical Immunotherapy of BCG. This three to four year treatment plan would look like this:

2 TURBT Procedures with Mitomycin-C (2-4 weeks apart)
6 Intravesical Immunotherapy Procedures with BCG (1 every week)
3 Intravesical Immunotherapy Procedures with BCG (1 every 3 months)
4 Intravesical Immunotherapy Procedures with BCG (1 every 6 months)
Close observation by Cystoscopy 1 every 3 months for 2 years
Close observation by Cystoscopy 1 every 6 months for 2 years

My urologist said the goal would be to eradicate the cancer cells so that they would not invade the muscle layer of the bladder and spread throughout the body. With that said, he indicated that the treatment is not guaranteed, and the cancer could spread throughout the bladder and other organs at any time of the treatment.

With that said, he said I could consider an R/C at this time.

I am in a state of shock and fear. Do these options sound correct? Has anyone had similar experiences with their bladder cancer journey? Does anyone have any advice? My wife and I are struggling with what to do!

Moreover, my wife and I have been searching for a hospital that has a specialization in bladder cancer treatment, and we have found the University of California, San Francisco and Stanford University. Our urologist supports our need to have a second opinion to verify his assessment, but I get the feeling that he still wants to implement the treatments. He has been eager to move forward with the second TURBT procedure. In fact, he wanted to schedule this second TURBT in two weeks after the first one! Does this sound right?

I am thinking of getting further treatment from UCSF or Stanford, because these places utilize technologies like blue light and laser resection tools. Will these tools increase the chances of eradicating the cancer cells in my bladder? Furthermore, if I need an R/C, I would like to have it done at a facility that utilizes robotics and has surgeons that have done R/Cs in large volumes. Is there a tactful way of expressing these concerns to my urologist without insulting him and/or alienizing ourselves to him?

Can intravesical Immunotherapy be done by traveling to UCSF or Stanford? Has anyone in this forum done this?

If you have any feedback, please write back to me. Very thankfully, Lee