1 year 10 months ago - 1 year 10 months ago#54173by Sean T
I've been through a six rounder and two three rounder's (I think, I've lost track) and, yes, the side effects are cumulative for me too. I don't get fatigue so much as I have frequency and urgency and lack of control. It is horrible for a few days after each treatment and just when I'm getting everything back to normal I have to go in for another dose. After about a week or so after the last round I'm as good as new. Another side effect that I've been having is I get sickly in my body as if I am pumped up with chemicals. It goes away in a few days but it is grosser and grosser each time I have a treatment. But I'm done until February and believe me the memory of the ill effects fades away rather quickly so hang in there.
08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Jun 19, 2019 - cancer free!
MDA was an awesome impressive place. My guy there is a Dr. Kamat - I decided to mention because I just did a search on him here - and saw him mentioned - then it occurred to me to mention his name in case any other new member decided to search on his name. At this point, I have only excellent things to say about Dr. Kamat - I did my homework elsewhere, and it all came back highly rated.
(I am sure there are many fine uro's out there - but I am happy to feel that I am very fortunate to be his patient)
Joe, you did exactly the right thing to seek additional opinions when things with the first doc just didn't seem "right."
And your story has another lesson....it is often a really good idea for the urologist to do a second TURB a few weeks after the first. Your situation is not unusual. The first time the urologist is going in sort of blind. He knows about where the problem is from the other exams he has done, but not exactly. Once he has removed what he thinks are the visible tumors and the path report is back he has a much better idea of where the cancer might be and can go back and do a more thorough exam of the area. And, as you have discovered, there was more to be found.
In my case the path report from the first TURB came back with low grade papillary and some areas that were not quite normal, but didn't look like cancer on the first pass. My uro went back and did a second TURB with special attention to the questionable areas and, low and behold, CIS! The outcome would have been very different for me
if this had been missed.
I don't have the statistics in front of me, but studies have been published that indicate that a second TURB results in a much better diagnosis in a high percentage of cases.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
First, you are in great hands at MD Anderson! They are "cutting edge" and they are my backup if ever needed.
Fatigue! Everyone will react differently. For me it was cumulative. After about the 8th induction it seemed to linger. Once we did the last it probably took me 2-4 weeks to really feel perky again. The good news is you will persevere and come out a better and stronger person.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
So far, only known symptom has been fatigue. It appeared after 2nd, and was worse after 3rd. Just had 4th yesterday. I am told it may get worse. That's OK, if this is my only symptom, I am good to go. All is going good - and when I went in for 2nd - I joked that I got a placebo. ANYONE HAVE INSIGHT INTO FATIGUE and how long it lasts after last BCG? (this is my question - what follows is background)
I had a T1 HG 3.5cm single tumor removed Mid June in Michigan. The only symptoms I had prior to finding the tumor was urinating blood for 5 days straight. Absolutely no pain or other symptoms. Got it removed a week after diagnosis. My problem began when I was discussing treatment plan. First urologist was going to do 8wks of BCG w/Interferon, and THEN a resection after 1st round of BCG. Got a second opinion which was the more typical approach; resection followed by 6wks of BCG. OK, I was then confused - so went to MD Anderson. I had my consult on a Tuesday, and the following Thursday I was having my resection done. I was home in Michigan Friday afternoon.
During the resection, my new urologist found more cancer at the original site, and four tiny growths elsewhere (which he said should have been discovered and removed during first surgery). My plan is to travel back to Anderson for my quarterlies and do my BCG in Michigan. My Anderson urologist recommended a urologist at UnivOfMich Cancer Center that actually did his fellowship under my Houston urologist at MDA - so he was OK with doing the BCG (this will also help me to build a comfort level with this new Michigan guy).
Back to Houston the first week of December to see how well BCG is working. <fingers crossed>