× Welcome click the New Topic button to post

Damsel in Distress In Need of Advice

12 years 2 months ago #19418 by Gene Beane
Okay, I think in a perfect world she should have someone handling this who is in her town, husband? HER CHILDREN MAYBE,she is clearly upset, and really needs to get a hold of herself. If her tumor is in her bladder, after the turb she should have been given a stage,,if its cancerous, then they would talk to her about bladder removal and deversions to choose from since her bladder is gone, like a neo bladder, indiana pouch, or an outside bag. They haven't done this either, so I am assuming she isn't going to loose her bladder. She needs a CAREGIVER like myself who goes with her to the appt.s and takes over from here to straighten things out in a calm fashion. My husband had 2 turbs, and after each was given a path report on what was found, stage 3 T-2 invasive bladder cancer. She was not given this type diagnosis either, so,,,who can help her??? She is clearly to upset to do it herself..what do you think of my suggestion? Ginger

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

12 years 2 months ago #19415 by shragae
Gene:

The tumor is inside the bladder. There is no question there is a tumor inside the bladder.

Originally the top doctor THOUGHT the tumor was outside the bladder but it is definitely INSIDE the bladder. Everyone now agrees on this.

If everyone is waiting for the infection to clear up then WHY did the doctor do the TURB on 7/10 a mere 1 week after saying the infection needed 21 days of massive anti-biotics???

As far as what kind of surgery is being done -- good question. Prior to the TURB we were told major surgery (incision from umbilicus down), removal of the tumor and resectioning of the bladder.

After TURB doctor says he MAY be able to remove the tumor trans-urethrally but he was waiting for the biopsy result.

I'm not the patient, just the sister who lives about 1000 miles away, but the biggest problem seems to be poor communication. FYI, the TURB was originally scheduled for 6/23 and canceled without explanation PRIOR to the infection being known. In other words things seem to be very one sided with little communication as to what is going on or why being relayed back to my sister.

God willing it is a benign tumor (it IS definitely a tumor guys). Originally symmetrical and egg shaped and now not so symmetrical.

As to why the doctor is irritated, again can't say for sure as I'm not there -- but my sister can be a tenacious bull dog -- she wanted 2nd opinions and even to see if this could be reduced through new treatments avoiding surgery. . . I think these efforts and emails / calls to the staff became irritating because she just didn't do as she was told but tried to "push back." Just guessing as I'm not there. . . but I know my sister. :laugh:

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

12 years 2 months ago #19405 by Gene Beane
Okay, I am really confused now,, why is the Doctor so irritated, has anyone said bladder has to come out?? This tumor is from what I have read outside the bladder, or your not sure. Karen is right, if you have infection you have to wait for it to clear up, your surgery date is to remove the TUMOR, right! My problem is the Doctor is not getting thru to you with the info that gives you satisfaction as to what is the real problem here. Someone should act in your behalf and go with you to follow up, write it all down,,from everything you have posted I am not sure what kind of surgery he is doing?? Do You???
Ginger

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

12 years 2 months ago #19395 by shragae
Rosemary wrote:

Dear Saw,

(snip)

So, you say this tumor is inside the bladder??? How can a Surgeon make a mistake and write down that a tumor is outside the bladder when it is inside the bladder.


Neither my sister or I are doctors so we can't really answer that question, but apparently the location of the tumor is very rare -- which is why the big and famous doctor agreed to take my sister's case in the first place. It is beneath the muscle, which is apparently why the top doctor thought it was poking from outside the bladder

Two MRIs show that it is in the neck of the bladder -- apparently trigone means two muscular sphincters that keep the exit closed at all other times.

This is all the information we have. :(

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

12 years 2 months ago #19393 by shragae
momof4 wrote:

SavvyPRpro,

(snip) If your biopsy came back and he told you it was no cancer, I would tend to agree with him. (snip)

Karen



Karen, just to clarify -- it was the OB/Gyn back in March (or so) that said the tumor wasn't cancer. The urologist at the leading hospital insisted that it be re-biopsied because he suspected that it MIGHT be cancer. Why, I don't know. He was insistent on the biopsy that was done at the TURB on 7/10.

The result of that biopsy has only been sent to my sister in the form of a partial email and a fax. The fax is one page (plus a cover page). It says:

"Interpretation and diagnosis" 1. Bladder, trigone (biopsy) inflamed granulation tissue, epithelium has been denuded."

The gross description is biopsy of trigone mass (fas) The specimen is received in formalin, labeled (my sister's name) and designated biopsies of trigone mass as the specimen source. It consists of 3 fragments of tan-brown soft tissue, measuring in aggregate of 0.5 x 0.4 x 0.2 cm. The specimen is entirely submitted.


That is IT. No comment about type of cells -- cancerous or non. It does say the case was shown at the daily quality assurance conference!

No one has called her to explain what this means -- and she placed two calls and an email to the nurse last week. There does seem to be a communication "problem" as the doctor said the surgery would be in July and now it is scheduled for mid-August. The scheduling nurse was going to check with the doctor (that was Wednesday). No word back yet as to any changes in the schedule. . .

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

12 years 2 months ago - 12 years 2 months ago #19386 by Rosemary
Dear Saw,

Everything that I have googled for "denuded epithelium" brings up a list of documents that describe IC (Interstitial Cystitis). Denuded was defined as "ulcerated."...

However, the part of this that is confusing to me is the tumor. My Bladder Cancer expert at UNC Hospital in Chapel Hill explained to me that anything that grows inside the bladder is considered to be cancer.

So, you say this tumor is inside the bladder??? How can a Surgeon make a mistake and write down that a tumor is outside the bladder when it is inside the bladder. This would constitute flagrant malpractice, and somehow, I just don't think that is going on here....

What do you think is going on???

Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 84 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 4 Latest User: Justindib
Yesterday Total Opened: 1 Yesterday Total Answered: 1
Total Posts: 54137 Total Subjects: 7104 Total Users: 6673