Ta Grade 3 Questions

Thanks to all who replied with comments and suggestions; you guys are wonderful.

To clarify, the second doctor recommended CT Scan and cysto/biopsy in the O.R. based on the pathology report stating Grade 3. (I didn't have the Grade 2 opinion at the time I saw him). If the tumor was not Grade 3, I would assume his recommendation would have been different. (I'll ask about that). See my original post for my history. In 2000, the treatment for my Grade 2 tumor was 6 weeks of BCG. That kept me clean for 7 years. I don't see why now, if this is actually a Grade 2 tumor, the same treatment wouldn't work again. All I want is two people to agree on the grade. I cannot afford to overtreat a tumor that is not really high grade, nor do I want to put myself (and whoever, if anyone, I can find to drive me)through that for no good reason. But, of course, I can't afford to undertreat a tumor that really is high grade. If they can't decide on the grade based on this biopsy specimen, I'm not sure that the next one will be any less confusing. (In 2000 I had 3 opinions on the pathology and all differed, though none was higher than Grade 2 at that time.)

As for the stage, the biopsy was taken in the office prior to using electrofulguration to remove the tumors. Therefore, the lamina propria was not represented in the specimen, meaning that it is Ta, as far as could be seen. There was one very small tumor and one very tiny tumor. My urologist has confidence that they were superficial, not at all invasive, and that he removed everything. Unfortunately, by the time I formulated my questions, he was out of the country on vacation, and by the time he got back, I had seen two other doctors for opinions.

My second opinion doctor, with whom I have the cysto in the O.R. set up, did not communicate well with me. Case in point -- he said if the situation warranted it, he would recommend maintenance BCG (15 treatments over one year). I explained that I would have to have the treatments closer to home, as I could not take a half day off of work each time. He said he couldn't understand why I'd have to take a half day off. I explained that it took me almost 1-1/2 hours to get there. He said "Well, it's YOUR bladder." I didn't find that particularly helpful. And when I told him I was having feelings of sensitivity and slight urgency, his reply was "Well, that will get worse with BCG." When I told him I had no side effects from BCG in 2000, he laughed.

As anyone knows who has tried to work for their employer while playing phone tag with doctor's offices, sneaking around to receive and send release forms via fax, making appointments, having somewhat lengthy phone discussions with the doc in a cubicle with no privacy, etc., it can be very time-consuming and distracting. I have good reason to fear for my future at my job if my productivity continues to suffer, but I can't do my job and these other things at the same time, and I work the same hours as do the doctors' offices. There is so much to deal with. Tomorrow I also have to call the billing dept. about how the annual checkup cysto was billed. It was billed as a "surgery" even though all he did was look. Interesting... looking back to past annual cystos, I only paid an office copayment. Now, suddenly, I owe over

Thanks, Rosie, for the suggestions about the patient advocacy site and the cytology test. No, a cytology was not done, nor suggested by anyone, but I wonder why not.

Connie,

Grade 2 is intermediate grade, not low and not high. It needs to be pinned down further: does it lean toward grade 3 or 1? Pathology is difficult and complicated for blc, but oh so important, as is staging as accurately as possible. This next biopsy should help pin down the stage and grade better than has been done till now (too much confusion).

I understand that getting a third opinion is a big pain but when a conflict occurs, and it's within your means to get such an opinion, it's a wise move. Having as much info, from the best doctors you can get, should help and not make things harder. At this point you're spinning between two opinions, I can imagine that is very hard.

Keep it up, you're doing amazingly well under the cirmcumstances.
Wendy

Connie,

My own personal opinion is to take the testing all the way through and get it behind you as recommended. It is actually a really good idea to get a baseline CT scan at this point.

Don't let yourself get into a panic, and try not to let your Cancer interfere with your time at work, as much as possible anyway. This will only add to your stress.

Line the situation up, the faxes and phone calls, etc, and try to stay in your normal routine as much as possible.

I really think you need the CT scan and biopsy.

Your friend,
Rosemary

Dear Connie,
I can understand your feeling up in the air with a difference of opinion on the grade of you BLC, but tell me, are they all in agreement on the stage? If it is Ta, even high grade, while you have to decide on treatment options, if it was all removed at the initial TURB, you shouldn't be running out of time.
Just what are the doctors telling you to do? I was TaG3 + CIS 6¾ years ago, treated with TURB and 8 weekly treatments of mitomycin C starting 1 month after the TURB. Treatment recommendations have changed since then, and even then BCG would have been the standard, but I did OK. No recurrences. I'm not recommending you be treated as I was nor can I promise you'll do as well as I have, but make sure you have full information regarding your doctors' recommendations and reasons regardless of the grade.

Connie,

I can thoroughly equate with your concern and fear as a long term blc patient and one who also had conflicting reports in my 7 year journey with blc. What were the results of your urine cytology test? If you have not had one done you can get it done at a Wal-Mart Redi Care clinic at your convenience at a reasonable cost or another drug store chain that has a nurse practitioner on staff. They have after work hours that are convenient for you and you need no appointment. Also, I highly recommend you contact www.patientadvocate.org they can help you through consoling and financial assistance. There is no charge for their services. You need not be alone to handle all these details. We are here to help through our experience with bladder cancer but the patient advocate group can direct you through the medical red tape system. My best to you. Rosie

Update on my situation:

The second opinion pathologist called my cancer Grade 2, not Grade 3. Am I correct in my understanding that Grade 2 is considered low grade? I'm very confused now. I will try to get a third opinion from the University of Chicago pathology dept., but if it IS high grade, I feel like I'm running out of time to do SOMETHING, as the cancer was first found on my annual cysto on 7/19. Since I am scheduled for a CT scan next Saturday and a cysto/biopsies in the O.R. on the 20th, I want to be sure there is a consensus that it is high grade before I do these things. If I have to postpone the CT until I get the 3rd opinion, I'll then have to go on a weekday. Since I'm allergic to the contrast dye, I can't drive there myself, and no one can drive me on a weekday.

So tomorrow at work, I'll fall even further behind as I make a half dozen phone calls to doctors and pathology depts., fax releases, etc.

I have one doctor telling me to do one thing, another telling me another, and now it seems there is no consensus on what whether I have high or low grade cancer. Is anyone else going through this type of uncertainty all alone? (No spouse or significant other, no supportive family, etc.) I would appreciate any tips on how to handle the stress/fear at this stage of the game.

Connie