confused, not knowing how to proceed

7 years 11 months ago #44885 by MikeP
58 yo male, doc just discovered a mass in my kidney ,he is sure it cancer due to fish test markers.
he want to remove the whole kidney,tube and cuff of bladder next Monday.
waiting on tests to have in Staged??
been seeing him for intermittent gross hematuria for a couple years
4 ct scans, 4 systomscope, cytogly and fish test.. all negative
last week all positive and 2 cm mass in tube in kidney
I do knot know how to proceed
would you go get a 2nd opinion? perhaps with an ocologist
do you know sites o that helpful??
normally in the family im the consultant, level headed ... cant think straight and done want to frighten my wife and adult children

Please Log in or Create an account to join the conversation.

7 years 11 months ago #44886 by sara.anne
Replied by sara.anne on topic confused, not knowing how to proceed
Mike, so sorry to hear your dilemma. You really do need a second opinion/analysis
if only to reassure you that you are doing the best you can with this. Where are you located and where are you being seen? When we know that it might be easier to recommend places close to you geographically.

Nationally, Memorial Sloan Kettering in NYC, Johns Hopkins in Baltimore, Univ. of Chicago, M.D.Anderson in Houstin, and USC in LA are among some of the best. There are a number of others and we might know of one near you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: MikeP

Please Log in or Create an account to join the conversation.

7 years 10 months ago - 7 years 10 months ago #44890 by CatherineH
Replied by CatherineH on topic confused, not knowing how to proceed
Hello and welcome to the forum, Mike. Talk about a roller coaster ride in a whirlwind, getting news like that and so little time to think would put anyone into a panic.

First, I definitely concur with Sara Anne to seek out a second opinion hopefully at a major hospital that specializes in kidney/bladder cancer. I know time is of utmost importance when dealing with any cancer, but it seems to be rushed that your doctor has already planned out a surgery while still waiting on your complete test reports. Maybe he is very familiar with your case having treated you for this long, but even if you are already at a large hospital, unless they are on the list of top 10, I would still seek that second opinion. I think that applies to any major illness.

As far as seeing an oncologist, many bladder/kidney cancer specialists and surgeons are urological oncologists, and your doctor may be as well. If not, then definitely get that second opinion by someone who is. (I was treated at Vanderbilt in Nashville and most of their urology faculty are.) Since your tumor is between the kidney and bladder, I would want a second doctor to confirm that taking the kindey and a portion of the bladder is the best option. The experience of your doctor is very important to getting the best outcome.

It's tough being the family problem solver and being hit with something like this that knocks you for a loop. I know you don't want to frighten your family, but they will be your core support team along with your doctor. As soon as you can wrap your head around all this, I suggest you bring them into the discussion. It is a scary situation for all of you, but it is less scary when you have each other to lean on.

Please post any other questions as they pop into your head. There are so many things to think about when you first get that diagnosis. Many of us here have been right where you are and we're still here posting in this forum because we understand the fear and uncertainty. You will get through this!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: MikeP

Please Log in or Create an account to join the conversation.

7 years 10 months ago #44891 by MikeP
Replied by MikeP on topic confused, not knowing how to proceed
thank you for your reply
I cant believe that I didn't even list what state, let alone city I live in.
I live in the Tampa bay area of Florida.
I understand that there is a pretty good hospital , H>L. Moffitt
which I tried to contact yesterday, and left maessages to the urology dept .my urologist did confirm that he has he done hundreds of the same operation and has taught how to do them laparoscopy ( sp), and often urologist are oncologist , he is not his specialty is surgery ...
anyway im hoping Moffitt will call.. or perhaps I go and sit there Monday morning.. to get someone attention.. in the department
if anyone does know any doc there it would help
again... thanks to the two who responded

Please Log in or Create an account to join the conversation.

7 years 10 months ago - 7 years 10 months ago #44892 by CatherineH
Replied by CatherineH on topic confused, not knowing how to proceed
Good morning, Mike... I don't have any info on Moffit personally, but Sara Anne probably does. I'm not sure if you can travel a bit, but Mayo in Jacksonville might be an option to consider as well. I ended up having surgery 300 miles away to get to the best care available.

I'm sure your doctor is competent in what he does, however, renal/bladder cancers are very specialized fields and seeing a urologist/oncologist is what I would highly recommend. Another thing I would want a second opinion on is whether laparoscopically is the best way to go for you. Everyone's case is unique and you want what will give you the best possible outcome. Also, confirm that some lymph nodes will be removed to get a more complete pathology.

The larger hospitals also have online information about their urology staff and sometimes you can request an appointment that way. Your plan to just go there to talk to the appointment people can't hurt either.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

Please Log in or Create an account to join the conversation.

7 years 10 months ago #44894 by sara.anne
Replied by sara.anne on topic confused, not knowing how to proceed
Mike, I am not personally familiar with Moffit, but I did a thorough check of their web site. It appears that they have several urologists who specialize in kidney/bladder cancers. The one thing you want to be careful of in choosing a urologist is to get one who DOES specialize in this area. Many urologist see mostly prostate cancer patients and do not have the experience you might need.

When your current urologist said that he has done "hundreds of the same operation" is he talking about the combination of kidney and bladder? Does he always chose to do them laporascopically? (Sometimes this is a great idea and sometimes it isn't...depends on the situation...and a good urological surgeon knows the difference!)

It would certainly be worth a consultation there, particularly since it is in your back yard!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne