Ta Grade 3 Questions

I'm sorry Connie! It's totally normal to use a CT scan in follow up, it's up to the discretion of the doctor whether it's with CTU or CT. I wouldn't be afraid of this portending something bad, it's about ruling it out, though.

There are different grades of dysplasia, ask for a copy of the path report if you haven't already, and explanation with all your questions.

I hope that is not necessary.

I understand your hesitance as we really have long term relationships with our doctors post cancer dx. Rough is bad when we're talking cystoscopy, it's a rather invasive tool. Too bad, because if it's a very smart, thorough doctor, he could be valuable...maybe you could discuss this with him, that you found it too rough?

Take care,
Wendy

My initial diagnosis was TaG3 + CIS, but I've never had a recurrence in 6¾ years, so our situations are not exactly comparable. My Urologist never recommended any other studies except the cytologies which never picked up the original cancer. Now, for reasons related to my urologist's dealings with a complication (a urethral stricture), I've changed urologists, and the new guy ordered a CT Urogram. My cystoscopy is still clear, but he's going to do a cystoscopy with retrograde urogram to look at the kidneys and ureters, largely because my CT Urogram showed some thickening of the bladder and mild enlargement of the ureter on the right.
Based on my own experience, I would say that TaG3 is certainly not a reason to do a cystectomy, but the concern is recurrences with progression. If after this length of time I had a recurrence, I'd probably think more about what would preserve my life than my bladder... but then, since I'm having so much trouble with the stricture, I'm not exactly friends with my urinary tract at the moment.
Cancer, the gift that keeps on giving, even when you're cancer-free.

Hi Wendy,

Now I'm really confused. Why would this urologist/oncologist order a CT scan instead of a CT urogram? Also, why would he recommend TUR if I don't have T1 disease? This is all very confusing.

No one has mentioned CIS to me, and, being as important as it is, I'm sure it would have been mentioned had it been suspected. My doc told me CIS is high-grade dysplasia. I have dysplasia, but what exact grade is it?

I do have health insurance, but my share of all this will amount to about $3,000, plus I have other health costs. Yes it is stressful to consider selling my belongings to take care of my health.

I am gathering my list of questions for this doc, though I don't know if I want him to treat me, given his lack of people skills and rough technique. Of course, I will ask the same questions to my urologist when he gets back in the country.

Connie

Yikes Connie, I didn't know you were paying out of pocket. That's tough!

I wanted to clarify that a CT urogram is a bit different that a CT: "A special CT scan, called a multi-detector row CT urogram" (I googled it and lots of stuff came up). I am pretty sure there is less radiation used, as well, but there is always some radiation with CTs, it's about risk vs. benefits, and when the dx is cancer the benefit will usually win out.

Actually it's T1G3 that is recommended to re-TUR, not Ta.

I'm just unhappy to hear that the second opinion cysto saw something else, can you pin him down and ask if he suspects it is CIS? It's an important prognosis factor. And ask if the CT can clarify what that spot was.

No matter how you cut it you are in a very nerve wracking situation and my heart goes out to you, I hope things go smoothly and easily and the results are favorable in every way.
Wendy

Thanks, Wendy. I would like a 3rd opinion, but don't know where to go. I don't want to get further in debt just to find another "cystectomy for Ta G3" guy. I called the Univ. of Chicago, but they won't give me a referral unless I have a doctor's order.

I know the guidelines recommend TUR for restaging after the discovery of G3, and I agree with that. I want my original urologist to do it, and hopefully he will realize the importance of it after I speak with him. As for the pathology, since the biopsy specimens were taken in the office, there is no lamina propria to do pathology on. That's why the TUR is so important.

Thanks for the advice with the CT scan. I am going ahead with it.

Connie

Hi Connie,

Things are shifting a little with staging and grading and terms used. They are dropping the term 'superficial', calling Ta non-invasive, and although T1 still qualiifies as non-invasive, T1G3 is not the same as Ta,G1 tumors, because T1's have begun to invade and actually have a different biology of TaG1 (which are truly non-invasive and superficial.) Thus, dropping the term 'superficial' for T1 tumors is becoming more common.

Grade II is also going out the window with the latest pathology recommendations saying to grade things either high grade or low grade. A good uro and pathologist should be able to pin it down to "high" or "low" grade with less room for ambiguity.

Rosemary is correct that T1's are not muscle invasive tumors, but invasion of the first layer has occurred. Before '98 it was very common to perform cystectomies in these cases, but the good results of BCG has led to it's popularity..sometimes it really works.

Because of some scary stuff being published lately about survival of those with T1G3 tumors (Dr. Lambert says T1 bladder cancer is the only cancer whose survival rate has gone down in the last ten years)- some doctors are starting to advocate early cystectomy for T1G3's, going back to the protocols of the pre-BCG era.

There's ongoing controversy of how best to treat T1G3's, for many years now. I think there's universal agreement that if BCG fails to halt grade III (high grade) TCC, cystectomy is the safest approach. TaG3 carries about the same risk of progression as T1G3.

It is actually a wise thing to check for upper tract involvement at this point in time, after 9 yrs and a progression in grade. CTU/CT urograms are becoming very popular because they give an excellent image of the upper tract-if you can find a place that has this technology.

I've known 3 women with similar age and history as you -Ta,G1 for many years then an increase to Ta,G3-from our discussion group, and they experienced upper tract recurs, got their bladders and a kidney out and bemoan that they did not have a cystectomy sooner.

I hate to post something so negative here, but do worry about younger women whose bladder cancer increases in grade over time. I'm not a doctor, but my non-scientific observation is that younger people often have more aggressive tumors than old people. There have not been any studies done on pre-menopausal women and bladder cancer.

If your second path report says it has invaded the lining (T1), the guidelines are saying to have a second TUR, after you heal, to remove and residual tumor before having BCG (or even cystectomy), because this has been shown to lead to a better outcome for T1G3 bladder tumors.

Please keep us posted.

Also...in the event of such a discrepancy regarding two opinions...could you possibly get a third opinion?
Wendy