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Husband newly diagnosed, I have questions
My husband was diagnosed with “at least” T2 invasive cancer and is waiting to see a specialist next week. He had a TURBT a couple weeks ago and since then has been excessively tired. He is normally an exceptionally hard worker and always busy at something, and now he isn’t doing much of anything, even napping in the afternoons. I’m concerned about depression, which would be understandable, but also concerned that something else might be going on. Is excess fatigue normal after a TURBT? Thanks.
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10 Replies
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Sorry to be so late on the reply.
But I will give you my idea of a RC surgeon.What I don’t want:
A Creative surgeon (artistic is also a no no)
A surgeon that does a Lot of different kinds of surgery
A surgeon that does a couple a month
A surgeon that has a lot of different body organs after his name (prostate, kidney,bladder, etc.) You want a specialist that has BLADDER as his specialty
A “nice” surgeon that doesn’t answer your direct questions and gives you the impression that this is just an easy walk in the park. It’s not.What I do want:
A surgeon who does hundreds of these Radical Systectomy. You want more of an assembly line worker, who has seen it all and knows every variation that can happen.
A surgeon who gives you the alternatives and the up side AND the downside of each.
A surgeon that actually cares about you as a person.(that does not mean he has a wonderful caring personality)and shows you that he wants the best diversion for your lifestyle and ability.
A surgeon with a track record of successful survivors who would do it all again if they had to do it all again with the same Dr.And it would always be nice if they came in after your surgery and called you “Their Model Patient”
I hope this helps
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
[quote=”SueH756″ post=51150]Thanks, George. What constitutes “a lot” of these surgeries? One a month? One a week? Daily?
Sue[/quote]
“A lot” does leave a lot for interpretation. Compiling on this board mentally over the 8 years I have been here I see posters saying 50-100/year on average, or more. Once a month is NOT enough! More importantly I want a sub specialist that lists bladder and maybe kidney over prostate as it is really a different animal.
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.
Sue,
I am also newly diagnosed and have been very tired lately. I attribute it to the sadness/depression I have been feeling lately. I’m also from missouri and do suggest going to barnes st louis to see a specialist. I see dr seth strope who is supposed to be one of the best in the area.
Thanks, George. What constitutes “a lot” of these surgeries? One a month? One a week? Daily?
Sue
Sue
Sara Anne does know her stuff and we always follow her lead. She and I are always advocating for a surgeon that does a LOT of bladder removal surgeries. They have seen it all and can handle all the things that come up.
I wish your husband the best and I know that depression is a real factor. When someone says “cancer” you immediately think the worst. This is normal. But after a while, he has to learn to fight the good fight.
Give him a little time and then “kick him in the pants” It’s time to LIVE.And a little humor doesn’t hurt.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Mayo would also be a good choice!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorThanks again. We will check out Barnes. We were also considering Mayo Clinic. It’s only about 8 hours away, and Barnes is 4 hours away. I appreciate your help.
Sue
I would assume that they would do a CT-urogram or PET scan before surgery.
Dr. Wakefield’s primary expertise does appear to be in other areas, although he does list bladder cancer. He seems to specialize in kidney issues.
Another good place for a consultation in Missouri would be Barnes Hospital in St. Louis.
Sara Abbe
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorThank you, Sara Anne. We’ve been referred to Dr. Mark Wakefield, who is the chief of the division of urology at the University of Missouri (Columbia) Hospital. We will find out next week exactly how many of these he does. If we’re not happy with the answer — because his online resume seems to indicate he leans more toward prostate issues and renal transplant — we will seek another opinion.
Another question we have is, do the doctors normally do some other tests before they remove the bladder to try to determine if the cancer has spread outside the bladder? It seems to me that if the cancer is already at a stage IV, there’s no point in removing the bladder and going through all that. So would at pet scan or MRI or some other type of scan or test show that, before the radical surgery? Or maybe that’s just something we have to wait and ask the doctor. This waiting is so hard, as I’m sure everyone knows. It’s hard to keep our minds from going to the worst case scenario place over and over again.
Sorry to hear about your husband. And yes, I would suspect that he is depressed. He, and you, are going to be facing some challenges and decisions and it can be quit daunting. I doubt that the TURB is responsible for the fatigue.
It is a good idea for him to be seeing a specialist. I assume that perhaps he is going to have a cystectomy? He wants to find someone who does MANY MANY of these and who can offer him the entire range of options available that are appropriate to his case.
There are many others here on this Forum who have been where your husband is and who are living very full and normal lives.
Best wishes for both of you
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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