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Help-Stepfather recently diagnosed
Hello,
My stepfather was recently diagnosed with bladder cancer. Initially it seemed like all would be fine, but when they went up the urologist found the tumor to be larger than first indicated. They sent away the removed mass for pathology. When the pathology report came back all the doctor stated was that it was “aggressive”. Today he is going in for a CAT scan. What questions should we be asking? Shouldn’t the doctor be giving us more information than simply “aggressive”? Please help!! To make matters worse, I am getting married in the Dominican Republic next month. Will he be able to go?
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7 Replies
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I replaced this question in new thread
I was diagnosed with noninvasive but high grade april 1, 2011 after TURBT performed March 30 by highly regarded private urologist. He said the tumor had been there for “a long time.” He did Mitomycin C treatment and scheduled course of 6 BCG treatments to begin April 20,2011. Two pathologists (one at major cancer center) concurred with noninvasive high grade per slides. Second opinion surgeon at MD Anderson recommends putting off the scheduled BCG treatments and going to MD Anderson week of May 24 for second TUR for restaging. I have read the MSK study on RETUR and comments on this forum that the second TUR is “gold standard” for high grade and I am inclined to follow advice of MD Anderson surgeon. Should I be concerned about delaying the BCG treatments, effectively doing nothing until the RETUR in the end of May? Should the RETUR have been suggested by my urologist even though he “aggressively” scraped more than 30% of my bladder and got margins, etc? I did note that in the MSK full article about restaging TUR the author said that getting good margins, etc on the first TUR could potentially take the place of the 2nd TUR. I am ready to go to MD Anderson if needed. I appreciate any input.
Thank you so much,
very scared and confused
3/30/11 TURBT TCC TaG3
5/02/11 2nd TURB
7/6/11 6 completed 6 BCG
MD Anderson is certainly the place to go if he can.
He needs to get the pathology report because stage is very important and will determine the treatment path.Once he gets the CAT scan done, he should still get a 2nd TURBT (TransUrethral Resection of the Bladder Tumor). That’s what they already did but it is best practice to repeat that surgery 2-6 weeks from the original one. The reason is that it is easy to miss some cancer the first time and they must get good clear margins (tissue around the cancer that is clear of cancer) in order to be sure they got it all.
MD Anderson should be where he gets this 2nd surgery done. Depending on the scan results, they very could wait until after the wedding for him to get the 2nd TURBT done. It is a discussion that he should have with the doctor.
Hope all goes well for him and congratulations to you on your upcoming wedding!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thank you so much for your reply. My mom contacted Houston today and they want to wait to hear about the CAT scan that happened today. We are supposed to hear those results on Tuesday. I will let you know how it goes.
Thanks Again,
Ashley
My father was diagnosed at age 80 and had his surgery in Ft. Worth. After complications from his surgery, I got him to see a urologist at UTSW in Dallas who was excellent. I wish Dad had seen this doctor in the beginning. MD Anderson would not take Dad’s Medicare Advantage plan, so he couldn’t go there.
UTSW has some very talented and experienced bladder cancer doctors and if you would like a recommendation, I would be happy to give you the doctor’s name. My Dad really didn’t want to be treated out of town since follow-ups would be a problem and where would he go if he had complications or other problems? Guess this was an issue for a man his age who doesn’t really like to venture too far from home.
You are in luck Huston is the home of one of the best places for bladder cancer in the world, M D Anderson. I would encourage your family to seek a second opinion there and to make the appointments now.
As to your question of your wedding it depends on a lot of factors. Until you know exactly what you are dealing with and his treatment path it is a hard question to try to answer. But tell him to let his doctors know that going is important to him and they may be able to work around those dates.
Good luck and keep us updated and ask questions that is what we are here for.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thanks for the quick response!
My mother lives in Dallas. I know that there is a good cancer center in Houston. Anyone know any details?
Sorry to meet you here….but you will find lots of information and support.
Sometimes doctors don’t think that patients “need” to know all the details, and sometimes patients don’t want to know. However, in order to make the right decisions, patients do need to have more information than you have been given.
The urologist should provide, especially if you ask, the grade and stage of the tumor (and a copy of the pathology report if you request it, which you should.) This will offer clues as to what the future may hold. There are people on this forum who can help you to interpret the information, if you desire.
The CT scan is looking to see if there is any spread of the cancer outside of the bladder.
Once this is done, your stepfather should seriously consider getting a second opinion at a center that specializes in bladder cancer treatment. Where are you located? There are people on this list who have pretty good information on the best centers.
Wishing you and your family the best of luck..
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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