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need advice / input T1

9 years 2 days ago #34483 by jj803
When I was diagnosed with high grade T1 bladder cancer, my urologic oncologist related that this was perhaps the most difficult treatment decision with bladder cancer. With T1 disease there is a relatively high risk of progression to deeper invasion, so the choice becomes between early cystectomy (very high probability of complete cure but with the risks and side effects of the surgery) and aggressive BCG therapy (which works for about 50%). Unfortunately, at this time there is no way to predict which patients will respond and which will progress while on BCG therapy. As it turns out there were pathology issues that suggested my tumor might be worse than initially thought so I opted for RC at age 59. That was 2.5 years ago and things have gone quite well for me. I have been fortunate enough to have avoided any serious complications and as of last visit remained cancer free. The surgery is certainly not an easy route and there are serious considerations, but if all goes well one can resume a quite normal life again without forgoing much, if anything, in terms of activities. When I was considering bcg, it was also recommended to have a 2nd turbt to be more assured of the limitation of the tumor in terms of its depth of invasion. Once the tumor is beyond the lamina propria and into the muscle wall, most recommend RC. Best wishes,

jj

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9 years 3 days ago #34471 by Patricia
Oops..didn't realize you meant Cleveland Clinic in Fla..which one? Weston or West Palm Beach? I know very little about the doctors at this facility. This one appears to have the most experience
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=13646
pat

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9 years 3 days ago #34469 by ginagrothe
I meant to say Nov. 4th for the TURB. My mind is going in a million different directions.

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9 years 3 days ago #34468 by ginagrothe
Thank you for the response. He will receive the second scraping at Cleveland Clinic in Florida. He is still at the hospital this morning. If the bleeding subsides they will send him home and schedule the procedure forNov. 20th (3 weeks from now). If contiunues having problems today,they will get him over to Cleveland Clinic for the Specialist to see him.

Thanks Patricia!

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9 years 3 days ago #34466 by Patricia
First of all i would tell you to stay with the Cleveland Clinic. Thats where i would take him. Who did you see there? Probably the most experienced is Dr. Campbell
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=6257
You want a top rated hospital for this and Cleveland is #2 in Urology and Dr. Campbell has the most experience.
He's bleeding because the tumor is still in there..he needs to be scheduled immediately for the second TURB. Call Cleveland and tell them what is happening.
pat

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9 years 3 days ago #34464 by ginagrothe
Hello all, hoping for any input and advice from anyone that has had similiar bladder cancer. My father received the news a few weeks ago that he has a tumor covering 3/4 of his bladder and it was most likely malignant. He was passing blood clots, lower back pain, and pain in lower right side. He met with the Urologist for all the scans, xrays, etc. and his scraping was performed last week. The Dr. said he removed about 60% and would send out for biopsy.

They sent him home that evening and he stayed at home for three days with a catheter. He was in pain and not feeling good at home. A lot of blood was in the cath. bag. He received his biposy results that it is a T1 and Grade 3. He met with a specialist at Cleveland Clinic and he recommended a second scraping to try and remove all. If unsuccessful the bladder and prostate would have to be removed and he would receive Chemo prior to having the radical surgery to shrink the tumor. My father is only 54 years old, so the news was not only very tramatic but frightening for us all. I did notice he was weak and still in pain. Not eating of drinking to well either. He was constipated and had to strain when moving his bowels.

We are now day 8 after the first scraping and he had to be rushed to the emergency room last night because he was having severe blood clotting. He has been in the hospital for 24 hours now and has have to have these clots flushed every 2 hours. He has lost quite a bit of blood, and is in extreme pain. Is this normal?? We are very concerned. The Dr. who did the scraping has monitored him and said if the clots clear up in the next 24 hrs. he can go home, if not he will have to have the next scraping asap. I am a concerned daughter and just want my Dad to be healthy and better....please if anyone had the same symptoms experience, please let me know. I am reading how many survivors say the only way to get rid of the cancer is to remove the bladder. Many say it always seems to re-occur, even with Chemo. Any input is appreciate.

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