Hi Kim: Everytime I read your msgs I get confused - but if I read correctly your Mom has superficial low grade bladder cancer and another mass inside her bladder. When I had my CT Scan (the only test I have had so far - Nov 18, 2006) it showed many things besides the 4 tumors inside my bladder, 8 cm conglomerate cysts on my liver pushing on my gallbladder and several large cysts inside my right kidney. My uterus is distended and pushing on my bladder. Also, it showed a lot of dried blood clots in my bladder. And then assorted other calcifications here and there. Yes, when I had my first TURBT I did not receive Mitomycin and was told they needed to do pathology first. It took so long to get the pathology report back (3 weeks) and then I had to wait until after the holidays to start BCG. This is when I sought help from Walter Reed Army Hospital and they performed a second TURBT, 2 new tumors and resection with Mitomycin (as now they knew I had cancer and the grade). My point is I have a lot of OTHER stuff going on that sometimes I worry about but doctors say it is aging mostly (63). Just had my three month Poke and Peek and was Clean and Clear.
Kim, your Mom is being seen at one of the best cancer hospitals in the U.S. and that should be comforting. Rosemary and Patricia are two of the best listeners and helpers on this site. One has their bladder and other does not. The waiting for tests, etc is probably the hardest part of any Cancer ( or other illness) - then as humans our active desimination of vast amounts of information keeps us up hours on end with the what ifs. All in all, if your Mom does loose her bladder, then from all I have read I would say Patricia's Indiana Pouch is the way to go. It would be my bladder of choice!
"Grandmothers are just antique little girls...."
OOPs...sorry...please apologize to your mom...i didn't mean to make her older. I was 60 when i had my Indiana Pouch....look 40...and probably still have the mentality of a l6 yr old!...Anyway...no i did not have any chemo...i was T1 Grade 2.....Dr. Herr got all the margins...the cancer was gone...no cells in my urine....but it had gone into the muscle...it was going to come back at some point. But remember it had been in there occupying space about 3 yrs. I could have stalled and watched and waited...but i really didn't want to be looking over my shoulder....my choice to get it out of there!!! But i had time to effectively make an informed decision.
Your mom will do great with the Indiana Pouch.......and after a while she won't even know its there. The lumpy stomach goes down....the scars fade away. And besides its kind of fun standing up to pee like the boys....no dirty toilets in restrooms to worry about...much more sanitary!!!...I think the guys have it made!! Pat
Did you have Mitomycin during the TUR. My mom did not, that is why we are anxious to start BCG. Also, I just read the post "Good morning -- Where do I start" and Sandra had four Ta G3 tumors removed, no Mitomycin and when they scoped her again five weeks after her first TUR she had 2 new tumors, so I am anxious. Thursday will be a month since my moms TURB and no BCG done yet. Also, for the record my mom is 60. We're hoping to get her to 80, but she's not there yet! I wonder if that changes your opinion about the Indiana pouch for her -- I know we aren't there yet but when we were discussing it you said they may only want to do a bag because of her age.
OK Kim..i found it........first of all when i had my first CT scan an unidentified mass was seen they didn't know about......guess what...it was a major blood clot in my bladder which i later passed..it could be that simple. She may have even had some "backup bleeding" outside the bladder. Fibroids and adhesions or even endometriosis from her previous surgery could be presenting themselves. I have complete faith in your doctor there at Sloan...she's one of the top surgeons. Ask if you can have the pathologist explain the masses...they do know what they're looking at. Personally i would schedule the colonoscopy first just to make sure there are no polyps present or a precancerous condition. We know the tumor that was removed is low grade....a high focal area means it needs to be watched...recurrence happens and future TURB's. Breathe....take it one step at a time...she can hold off on the BCG. I had stage II tumor and invasive and i didn't have my surgery until 4 l/2 months later...the doctor had gotten all the margins at Sloan and bought me time. I had no recurrence when they took out my bladder and no nodes affected. Your Mom is 80 and BCG can be difficult especially for the elder population. Have faith that Donat and the ob/gyn really do know what they're talking about. If you need to.. ask to have an appointment with Donat and sit down with her with your results and scans and ask for a play by play explanation . Pat
I would really want to know what the "mass" in the bladder is also. However, I think we can pretty much assume that Sloan Doctors know surely must know what they are talking about.
I think it would be easier for you to relax more, if you could get the facts to line up a little better. It just doesn't feel like enough caution is being taken.
Sorry, I'm not all that comfortable with what I'm hearing either. It just sounds like you are not getting much help with the WHOLE picture. When I compare it to my own experience, my "high grade focal" path report put my Uro into a tail spin.
As far as BCG's go, I really feel that you can do this locally. This is one area where I just don't think you have to have your Mother jumpimg through hoops to get there. You are going to have to put her through major fuss about other issues down the road, I think. But then, again who is going to be monitoring her through all of the treatments? Especially considering these other issues.... She will need some faithful monitoring.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Back on the emotional roller coaster again. After talking with the nurse today I reviewed all of the reports again because despite her telling me that the doc said the bladder mass was outside the bladder, I thought I remembered it being INSIDE and guess what? It is inside! I will call again tomorrow and "remind" them of this fact and see if it changes the docs approach. No, Rosemary, she isn't scheduled for another scope until July which will be 3 1/2 months after her TURB. The doc today told my mom to relax that she is going to be just fine and that this other stuff is not bc, and of course my mom wants to believe that, but I cannot rest in that opinion until someone can say what this other thing in the bladder is! We are on our second doc at Sloan and I know they are experts in their field, but if they are misreading the facts in the reports (thinking it is outside rather than inside and low grade rather than high grade), how can we rely on the opinions they form? My mom really wants to go ahead with the BCG and I know she wants to think these other masses are nothing, but three studies (CT scan, ultrasound and MRI) have shown a mass in the bladder on the posterior wall and just outside the bladder in the same area there is a mass -- am I crazy to worry that it may be bc????!!! I am not an alarmist, and I do not have a medical degree, but doesn't that seem like a plausible possibility? I just do not want to hear in July that this was cancer and it in invasive. If it is I want to know that now!
My mom was planning on doing her BCG treatments locally so I am thinking that perhaps we should set up an appointment with that uro and see what he thinks about all this? Of course he is not affiliated with a major cancer center, and he is rather young so I question how much he has seen, but I do not know what else to do. I would like to take my mom down to Johns Hopkins, but I know she won't go for that. Her doc told her today she needs to start the BCG for peace of mind as much as anything else and my mom agrees.
What should take priority here? Biopsy or BCG? Also, what if she has the needle biopsy and it turns out to bc and she has started the treatment (which she can do in conjunction with needle biopsy) would she have to delay any surgery because of the BCG in her system? Her first uro said she needed to wait six weeks after BCG before a scope -- does that mean she would have to wait six weeks before surgery too? I'd appreciate any guidance you can give.