From what I have read and experienced, BCG has side effects (in a small number of cases can be serious). Due to these effects, BCG might not be worth going through for a single tumor, especially if given post-op mytomicin.
Hope this helps.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
Im sorry if it sounds like Im being obtuse here. I have every intention of getting a pathology report ASAP. Thats why I was angry zth the VA's uro dept. I bugged the advocate until she knew that I was going in to my VA appt blind. The pulled a few strings and then called me to say they had secured a copy of my hospital records. The fact that the PA I saw couldnt have cared less really got to us.
I will call my PC nurse tommorroe and have her look and see if anythhing was added to my chart. If not maybe I can light a fire and get them there in time for the appointment!
Britt...the thing here is if you get the pathology report and just that from the hospital for $25 you will have your diagnosis...whether its a Ta tumor or more invasive...then we can really advise you. NO uro is good enough to look into the bladder and say something is invasive or not.....just doesn't work that way. The largest tumors can be non-invasive......the smallest invasive.....its random. Only the TURB with a portion of the muscle removed with tell you what you have. And the FISH test will be more accurate with higher grade tumors or CIS. CIS can hide.....mine certainly did.
Indianapolis is no more than l hr 20mins to IU Med center from Cinti and my thought there was maybe..just maybe...they work in conjunction with the VA there in Indy......just a thought to ponder.
The pictures I saw from the cysto showed the entire wall of the bladder as a dark color(again a sunburn comes to mind) after the TURB the skin looked pink and alive.
Id give anything to be able to walk away from the VA. The problem with Cleveland is that due to arthritis I cant handle the car trip. I went up the the VA by Case western and had a defribulator consult. It was about a 5 hour drive. I barely made it and that was 4 years ago. Ive gone downhill since then. Also I might be able to get a 2nd opinion but after that I dont see a dr continuing my treatment if I cant pay him,
Gloria and i had a little fight about it again. She doesnt trust the VA after what they have done to me before. Im of 2 minds here. I really dont want the VA to do any of it but if they are able to do the upcoming cysto in the labe rather than surgery It would be a good thing. I wouldnt have to go thru all the stress of a general. I pray to God that the sope will go right in this time. As I mentioned, after having that huge double catheter in me 4 3 days I expected complications. When the nures removed the cath it really wasnt terribly painful. I also expected problems yrinating. On a previous cath it felt like I was passing razor blades for over a week. here there was no complication. Also factor in that they manged to get the cysto probe past my prostrate as well as the big cath I can pray for a cysto under normal conditions.
Sorry to keep badgering all with silly questions. I am afraid that on my post TURB consult that I was incoherent. A combination of valium, uripas, cipro and my pain meds had me in a daze and I dont remember any of the first consult. The second time he showed me the pictures again and told me he would continue my treatment ad do anothe cysto mid march.
The good news is that if you got the term CIS from me and not the doctor, maybe you don't have it. If not, then BCG probably isn't needed. Sorry if I caused confusion. Only the docs can tell you if you have/had CIS. That should be in the diagnosis. If they were saying its not aggressive then they probably didn't see CIS in the pathology or the tests. I wouldn't expect that they don't know CIS is aggressive.
Pat gave some great places for 2nd opinions already. You may want to put together a list of questions to take with you (both to the 2nd opinion and to your regular uro). Write the answers down while having the discussion. That's what I did so I didn't miss or forget things.
It's typically a confusing time so making notes can help. At least it helped me.
For me, they saw a flat red patch that wound up being CIS. You can't always see CIS and color differences are not a positive indicator for CIS either. I think pathology study of biopsied tissue and/or FISH test are the typical way to know for sure.
CIS is rarely detectable.....FISH test is the best test to confirm it..very few false positives with that one where there are a lot of false positives on lower grade tumors.
I had one...yes just one...itty bitty tumor that my urologist said...it was nothing. OOPS...pathology came back and itty bitty tumor was growing out of CIS and muscle invasive. So until pathology is determined don't fret about CIS. Get that report from the hospital...it will give stage and grade.
Definately a very experienced Uro...Make the trip to Cleveland...not that far for the best.....about 4 hrs from where you are. See Dr. Campbell or Stephenson
Or closer to you and well known for their work with bladder cancer Indiana U Med Center...Drs. Koch or Bierhl..they are also close to the VA Hospital in Indpls.........