That sucks! How utterly frustrating and confusing, not only for you and your son but for the doctors as well...
I was very glad to read that there was an extensive re-scope done going all the way up, plus re-cauterization of the old TUR site. You should be able to rest easier knowing that all visible cancer is gone and no abnormalities were seen. As I said way back after your first post here, there is a chance your son is actually cancer free at this point.
There is a new technique that improves greatly on the accuracy of cystoscopies, it would be wonderful if it were somewhere close to you. There's info about it here and phase III trials are being conducted around the U.S. (it's been approved in Europe for a while),
This could rule out invisible cancer lurking somewhere just under the lining, as CIS often does. The blue-light, fluorescent cysto technique is especially good at uncovering CIS.
I suppose the puzzle still remains the same, what is causing this bleeding, and that the pieces can't fall into place until that's known and dealt with. It couldn't hurt to travel the greatest, bestest place for bladder cancer treatment that you can possibly get to, somewhere with every cutting edge diagnostic and treatment tool available.
Well, this is 'Mom' again to update on my son's missed BCG treatments and asking for guidance/advice. My son is 45 years old, unmarried, non-smoker and he was diagnosed with superficial bladder cancer Thanksgiving of 2006 and still has not completed the prescribed BCG six treatments once a week. To date he has received only 2 BCG treatments.
He recenly had a second cystoscopy about 5 weeks ago and was scheduled to begin the BCG treatments April 2. He was unable to begin because of bleeding at the end of urination. During this recent cystoscopy the doctor looked all the way in the ureters to the beginning of the kidneys, searched closely the neck of bladder on the recommendation of Dr. O'Donnell. He was given advice from both Dr. O'Donnell and Dr. Lamm on another treatment form, but can't begin that until the bleeding stops.
Recent cystoscopy diagnosis: Nothing new found, no new growths, no invasion of the bladder muscle and re-cauterization of the previous TUR site that was originally done around Thanksgiving 2006. He was to begin BCG Apr 2 and had to postpone again. He had a CT Urogram and got the results yesterday. Negative. His 'clotting' blood test was also acceptable. His doctor has recommended him seeing an associate in the same Urogology group in St. Louis.
Please any comments or advice is appreciated. I have so many questions and suspect you know what they are with this elapsed time to begin BCG.
Hi, everyone, This is Mom again. After consultations with Dr. O'Donnell and Dr. Lamm, my son had another cystoscopy last Friday in St. Louis. His doctor was in there close to an hour searching every possible crevice. He found no new growths. He looked in the tubes going to the kidneys and paid special attention to the neck of the bladder which is a tricky place to inspect. He cauterized the original TUR site to stop the continued bleeding. Now Todd has to wait about four weeks to begin the BCG treatment again and the doctor has him scheduled for Apr 2 for the first of six treatments. They are starting all over again. He sent him home with spasm and pain meds.
We had been in the waiting room and I decided to get up and walk to the gift shop and walk around there. Would you know that is when the doctor came to talk to us!! I missed him, but John knew what to ask, etc. He said he drew pictures for John and explained everything. He is very young, but John liked him.
Glad that's over - now on with the BCG treatments!! I went with three nutrician books on nutrician and cancer and even a cookbook! Everyone here has been so supportive and extremely helpful. Thank you to all.