Ta Grade 3 Questions

Connie, I know it is disheartening to be clear of bladder cancer for 6 1/2 years and then come up with it and at a higher grade. My immediate thought after reading your entire post was: Was it the same doctor for your original diagnosis, the second and the third? If this is not the same doctor you have been seeing over the past 6 1/2 years and you state he and his staff are unable to answer your questions or that they give you the wrong information, don't you wonder if the type and grade are correct at this point? Did you receive a written pathology report in each instance? Was it the same pathologist? I know the grading system has changed recently so that may also play a part in your newest grading. I have been involved in this blc journey 7 years and have seen many mistakes made in relaying information as to treatment, history, etc when talking to the doctor or nurses or staff. One time the doc was reading from another chart. Because he was easy to talk to and not offensive he was very apologetic and corrected the mistake by pulling my correct chart while we were talking on the phone. If you can't talk to your doctor or have confidence in the staff you are at a terrible disadvantage in your treatment and prognosis. I think you should find a urologist you can trust and have good communication. As I was able to receive more information and gained more knowledge of my condition I sought out urologists who knew at least as much as I knew. I am happy to say my newest urologist (my 5th) is teaching me even more than my 7 year extensive research and involvement has done. It feels good to know I am in great "hands." Rosie

Connie,

I had a 2nd biopsy 6 weeks after my first one, and jumped from a Ta G1 to a T1 G3!! That is what I call pathology whiplash!!

I think you are going to have to negotiate very strongly with your doctor about scheduling your BCG's in the late afternoon. Believe me when I say, that you should not go back to work after BCG's as your urine is considered to be at toxic levels for at least 6 hours after administration.

I think I am getting the picture about your doctor and his staff, but, let me just give some advice, as your options seem limited....

GET HIS EAR!!!!! PRONTO!!!

Be as nice as you can be to him, and listen to what HE has to say first, and then NEGOTIATE with him like crazy!!! Unless you have other options, this is just what you are going to have to do. When you present your case to him, just as you have presented it to us, I think he will hear you.

Please keep us posted,
Rosemary

Hi,

My name is Connie and I haven't visited this site in about about 6 years.

My history:

1998 -- Ta Grade 1
Treatment: TURB

2000 -- Ta Grade 2
Treatment: TURB + 6 wk BCG

7/2007 -- Ta Grade 3
Treatment: Biopsy, electrofulguration in office, and 3 wk BCG to come; quarterly cystoscopy thereafter

I have never smoked, but have been subjected to a lot of second-hand smoke. Now I live in an apartment building with a lot of smokers, and the smoke seeps into my apartment. (The smokers moved in after I did; just my luck.) I run air purifiers because I can't afford to move due to my medical bills. I have never worked with any chemicals associated with BC. In 2005 I had long-term exposure to black (toxic) mold, suspected of having an adverse effect on the immune system.

I have several questions/concerns.

Does anyone have a similar experience to mine -- a long clean period, followed by the appearance of a higher grade tumor? What treatment was proposed if you had Grade 3 recurrence after having lower grade tumors?

Has anyone heard of doing only 3 weeks of BCG after 7 years of being "clean"? Is it considered maintenance BCG or a second course of BCG?

How many of you have gotten a second pathologist's opinion and found it to be different from the initial pathology report? Did you find someone who specialized in urological biopsies? I am wondering how to find someone like that.

Does anyone know where I can read statistics on how often Ta Grade 3 progresses to a higher stage?

Before someone says to ask my doc some of these questions, let me say that is another concern. The doc, his nurses, and his receptionist are difficult to reach and communicate with. They do not call when they are supposed to, return calls when they say they will. When I do get the staff on the phone, they don't know the answer to my questions and say they'll get back to me (which, of course, they don't and I have to call again.) I do have a call in to my doc right now to call me today.

I have tried to set up my BCG appointments, but they want to do them first thing in the morning. Is this typical? I don't understand why they would not be done at the end of the day, when the patient could go home, rather than have to go to work after the two-hour roll-around. I guess I will have to ask the doc to find me a place that will give me BCG after 3 in the afternoon if his office is unwilling to do it.


Although I live about 25mi. SW of Chicago and have a variety of urologists to choose from, I need someone near my home/work to see on a regular basis. Taking a whole day off 9 times a year to go downtown for cystos/BCGs/consultations, etc. would quite possibly get me fired from my job. I have several other health issues to take time off for. My employer has tried to fire me before when my absenteeism was excessive, but I fought it and am still employed.

Thank you for reading and for any replies/information/support you can offer.

Connie