7 years 8 months ago - 7 years 8 months ago#43027by mmc
Attachment NCCN_guidelines_for_bladder.zip not found
Here are the updated NCCN guidelines. These are the guidelines that urologists use to determine treatment. The first options for treatment, when there are multiple, are listed in order of preference.
This is partly what I based my patient treatment guidelines on but I did them at a much higher level because the NCCN version are a bit tricky to follow. I would suggest printing them out because it is easier to flip back and forth that way.
Here is a link so you can view it on the site: http://www.nccn.org/professionals/physician_gls/pdf/bladder.pdf
You may need to join (for free) in order to be able to see it.
I was able to post it here as a zip file. You should be able to click it and download it to your PC. Then double-click the file to open it, select the file inside the folder and double click that to open it for reading/printing.
THIS SHOULD BE REQUIRED READING FOR ANYONE WITH BLADDER CANCER. IT HAS TONS OF INFORMATION ON THE RECOMMENDED TREATMENT PROTOCOLS. PRINT IT OUT AND USE IT WITH YOUR DOCTOR TO DISCUSS YOUR TREATMENT. IF YOU DON'T UNDERSTAND THE TERMS, LOOK THEM UP ON LINE. THIS IS REALLY, REALLY, REALLY, WHAT EVERY BLADDER CANCER PATIENT SHOULD KNOW AND UNDERSTAND. IF YOUR DOCTOR WANT'S TO DEVIATE FROM THESE GUIDELINES, YOU'RE QUESTION SHOULD BE "Why do want to deviate from the NCCN recommended protocol? Does your treatment plan have better outcomes than those described here?".
Personally, I don't think they give Dr. Lamm enough credit and think it will only be a matter of time before his recommended maintenance schedule becomes the standard, but other than that this document is really great.
7 years 8 months ago - 7 years 8 months ago#43026by mmc
My uro sent me this information about the recent guideline change for follow up after a radical cystectomy. I'm coming up on four years cancer free (in October) so it is time for me to get checked again. I was also starting to get concerned about having a CT scan every year.
The following are the most recent NCCN guidelines for follow-up:
After a radical cystectomy
• Urine cytology, creatine, electrolytes, every 3 to 6 months for 2 years and then as clinically indicated
• Imaging of the chest, abdomen, and pelvis every 3 to 12 months for 2 years based on risk of recurrence and then as clinically
• Urethral wash cytology, every 6 to 12 month; particularly if Tis was found within the bladder or prostatic urethra
•If a continent diversion was created, monitor for vitamin B12 deficiency annually
So...for me, all I had to do was go to my GP and give a urine sample for the cytology test. Did that yesterday so I hope to be posting my "official" four years cancer free some time next week or so. I was getting the with and without contrast CT, creatine, and B12 every six months for first year and then every year. I just had my GP add the B12 test to my annual blood test.
Thought others may be interested. Getting a CT every year can increase your risk of other cancers.
He added this additional information for me:
Given that you are now 4 years cancer free, as long as you feel well, don't have any new urinary complications, and have an annual visit with your PCP you only need a yearly urinary cytology and serum vitamin b12 level. I don't think a visit is necessary, but please call/email me if you experience blood in the urine, new pains, kidney function changes, or UTI. We can arrange these tests for you if you like. Just let me know and please continue to give us updates about how you're doing!