Bladder Cancer Treatment Guide for Patients

I'm a process oriented guy with a history of bladder cancer and I decided to put together a process flow chart of the bladder cancer journey. My hope is that this will be helpful for patients to use with their doctors to understand next steps and normal treatment options depending on stage, grade, or recurrence.

Rather than try to keep multiple versions of this up to date, I am just putting the link here to take you to the site where I originally posted it.

I've gotten some great feedback from other bladder cancer interested parties and incorporated it into the flow.

See: http://www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=114& func=view&catid=3&id=28419&limit=6&limitstart=6#28483

There is an image of the overall flow on that page as well as a link to download the pdf (Adobe Acrobat) file. I suggest the pdf file as it is much higher resolution and much easier to read.

Feel free to share it any way you think useful.

Mike

By RickB
Posted November 4, 2009 at 10:00 pm
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Mike,

I think this is a great idea, maybe because I, too, am process-oriented.

I would, however, suggest some revisions. Standard of care for muscle invasive (any grade) or high grade bladder cancer is radical cystectomy. Neoadjuvant chemotherapy is recommended as well. This assumes the patient is healthy enough.

Metastatic cancer is grade 4.

Rick B

By mmc
Posted November 4, 2009 at 10:09 pm
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Rick,

Thanks for the feedback.

However, standard of care high grade, non-invasive (such as CIS) is not RC, it is BCG.

Neoadjuvant is typically not recommended for Stage 2 unless it is questionable that it may actually be Stage 3. Some times it is adjuvant and not neoadjuvant.

I think you mean Stage 4. Stage 4 is not necessarily mets. It is through the bladder and may be into prostate (in men) but it is not consider mets until it would have M or N rating above 0.

By 15yrsurvivor
Posted November 4, 2009 at 10:13 pm
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I can tell you have put a lot of work into this! Thank you on behalf of newly-diagnosed patients. I am giving this a "recommendation." Good job!

By loonym
Posted November 4, 2009 at 10:14 pm
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I had a reply to you in this thread shortly after you posted and I'm not sure why it's not here now but I just want to say thanks for a great guide.

By mmc
Posted November 4, 2009 at 10:27 pm
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Thanks loonym! I saw your earlier response and a few others that seem to have disappeared as well.

I have no idea what happened to the other replies.

Mike

By markl1966
Posted November 6, 2009 at 9:05 pm
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Great info Mike,

Thanks for posting it. I like you, am a process oriented guy, I work in the computer field. The more real data I can see the better.

Good luck!
Mark

By mmc
Posted November 6, 2009 at 9:29 pm
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Yes, I did one in Journal and one Discussions to try to increase the viewership. I never know where new folks will look and I'm hoping to help new folks understand the treatment path and have a tool to use with their doctors.

Thanks to everyone for the great feedback!

Mike

By gauge
Posted November 7, 2009 at 10:57 am
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Mike,
Outstanding! Thank you. This should help thousands!!

One comment....
I had CT and chest xray next day after discovery of tumors via cystoscopy. So the CT and chest xray were done BEFORE my TURB. This gave the doc and me an idea immediately what we were dealing with, i.e if nodes were involved or if it was outside the bladder already.

Thanks again. This is fantastic!
Cindy

By mlm520
Posted November 7, 2009 at 9:03 pm
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this is so great. it confirms what I have been finding out, I have stage 2 transitionional cell carcinoma and am being pulled two different directions as far as treatment goes. I had a turb and tumor removed. looking at cystectomy. one dr says chemo, the other said not, I really feel it should be not. thus far there is no other signs of the cancer anywhere but the bladder.
thanks again, this will help me work with my doctor.

By mmc
Posted November 7, 2009 at 10:42 pm
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I hope you are able to have some god discussions with your doctor using the flow I put together. Please keep in mind that I am not a doctor (but I've also had an RC and did not need chemo).

It would probably be a good idea to ask the Dr. that thinks you need chemo, why he/she thinks that. Are there any extenuating circumstances that are behind their suggestion?

If you have stage 2 that seems borderline (maybe 2 maybe 3) then that may be a reason to consider it. In the end it is your decision but I would always advise questioning and understanding the reasons behind the treatment recommendations that a doctor would make.

Best of luck with your treatment and I hope that you get and remain cancer free!

Mike

By Stuckdh
Posted November 8, 2009 at 9:37 am
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Mike, I was recently diagnosed with CIS bladder cancer early stage and start BCG treatments next week. As an engineer with Six Sigma green belt training, what you put together is what I wished a doctor would have showed me. Excellent work and it has already helped me with potential upcoming decisions. Thanks for this as I start my journey being new to this experience.
Don

By mmc
Posted November 18, 2009 at 2:33 pm
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Good luck Don. I recommend studying Dr. Lamm's information on BCG. Many uros like to go full strength or 50%. Dr. Lamm seems to think that you could go to 33% or even 10% without reduced efficacy.

The lower dose increases the chances that people will tolerate the BCG treatments and there will be fewer dropouts. I failed BCG and had a recurrence which became invasive and required RC.

Mike

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