Ta Grade 3 Questions

16 years 7 months ago #7693 by Rosemary
Replied by Rosemary on topic Ta Grade 3 Questions
Connie,

I am T1 G3 and I still have my bladder. T1 Grade is NOT MUSCLE INVASIVE, but, it is high risk. T1 means that the tumor has only invaded the first layer of the lamina propria.

When I went for my second opinion to a distinguished Doctor at UNC , the only criteria was, "If it's in the muscle, it's gotta go (referring to a cystectomy)" It was not in the muscle. I still have my bladder, and so do a lot of folks around here with the same stage and grade as me.

I think you need to wait and see the full account of the 2nd pathology report before you start even considering anything as drastic as a Cystectomy.

Just my opinion.

Regards,
Rosemary

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

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16 years 7 months ago #7692 by ConnieOnAQuest
Replied by ConnieOnAQuest on topic Ta Grade 3 Questions
Update:

I sought a 2nd opinion re: my treatment options for Ta G3 tumor. The urologist/oncologist I consulted recommended:

1) CT scan (Kidney Triphasic [includes pelvis])
2) TURBT with retrograde
3) If no invasive cancer found, 6 weeks BCG

My question is, the 2nd opinion doc referred to T1 as invasive BC. My other doctor refers to it as noninvasive, like Ta. Apparently, the 2nd opinion doc is of the mind that if you have T1 Gr 3, the bladder should come out. I was rather shocked to consult him re: noninvasive cancer and have him mention taking the bladder out about 4 times in 15 minutes. As far as anyone knows, I don't have T1, I have Ta! It was almost like he was assuming he would find invasion if he did a TUR, at least as he defined invasive. He would hardly talk to me about noninvasive treatment options, just kept saying "Let's see what we find." He then did a cystoscopy and saw a suspicious spot on the bladder wall that was not mentioned by my urologist.

My urologist recommends BCG, cystoscopy in 3 months and 6 months, and take it from there depending on what, if anything, is found. The 2nd opinion guy recommends the TUR, then the BCG, unless high grade T1 is found.

So now I don't know what to do; I have two opposing opinions. The stress of trying to make this decision is getting to me.

Meanwhile, I still don't have the 2nd opinion on my pathology because my urologist's office screwed up the paperwork. My urologist is out of the country. So I'm still waiting on that. I understand Bostwick Laboratories are excellent uropathologists, so I'm not really expecting a 2nd opinion to say it's G2 instead of G3, though I'm hoping against hope.

Have others diagnosed with TaG3 been advised to get a CT scan? Retrograde? I don't think it's safe to get a lot of CT scans, and I've had a few for other reasons, so I try to avoid them, if possible. Wouldn't it make more sense to hold off on the CT scan unless T1 is found? Just wondering.

One other thing. The 2nd opinion guy was so rough with the cystoscopy that I could hardly urinate for 24 hours afterwards. Normally I have no pain or problems after a cysto. I have to wonder how I'd feel after a TUR with this doc.


Connie

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16 years 7 months ago #7275 by mrjoeo
Replied by mrjoeo on topic Ta Grade 3 Questions
Connie:

I am also in Chicago. My Doctor is one of the "Top Guys" in his field at Northwestern Memorial Hospital and he has been great, he even gives his patients his home phone number if they have any questions or concerns! If you have any further problems let me know and I am sure he can see you on short notice.

Joe

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16 years 7 months ago #7274 by wendy
Replied by wendy on topic Ta Grade 3 Questions
Hi Connie,

You were smart to get another opinion on the pathology, let us know what it says. Also good to get a full course after 7 yrs instead of 3 maintenance rounds!

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

I don't know where to find those exact stats but I do know that grade 3 carries the same risk whether it's Ta or T1 and should be regarded as the same. It would be great if the second path downstages the grade, let's hope so.

Take care,
Wendy

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16 years 7 months ago #7253 by ConnieOnAQuest
Replied by ConnieOnAQuest on topic Ta Grade 3 Questions
Thanks to all who replied so far -- it means SO MUCH to me. Here's an update.

I spoke with my doctor and with the office manager of the urological practice. Both apologized to me for my experiences.

The doctor, upon my request, is going to have another pathology report done by a pathologist independent from the ones who did the first one. I queried him about who read the first report, and he talked to me at length about their credentials and why he uses them. They sound excellent; nevertheless, I want a second set of eyes to look at the biopsy specimens. I will make sure I get a written copy of the current path report and any future ones.

My doc now says I will get 6 weeks of BCG. I feel more comfortable with that. I told him that I had no side effects from the first round in 2000, and he said if I can find out what strain and strength they used, he can order the same. Though he said he is considering recommending maintenance BCG now as well. I know it is a tough call.

Rosemary, you were right... when I presented my case to the doc, he changed all but one appointment to 3:30 in the afternoon, which works for me. I will just have to take the first day of treatment off, then leave work an hour early the other days. My immediate supervisor has kindly said he will let me make up those hours whenever I feel up to it.

Rosie, this is a different urologist from the one I had in 1998 and 2000. I really liked the one I had then -- he had it all: knowledge, compassion, communication skills. But unfortunately, he fell ill and died! (He was about my age at the time -- I was 45 when my cancer was first diagnosed). The urologist I have now was recommended to me by a respected urologist at a highly respected hospital, Rush Medical Center in Chicago. I consulted that doc upon getting an ambivalent path report after my first recurrence (was it Grade 1 or Grade 2???) So I hope I am in good hands, but sometimes you can't help but wonder!

I guess my greatest fear is that my doc didn't "get it all" when doing the fulguration, and somewhere there are a few aggressive cancer cells burrowing in...

I am scared, and when you're scared, you can't always think straight.

Best wishes to you all,

Connie










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16 years 7 months ago #7217 by momof4
Replied by momof4 on topic Ta Grade 3 Questions
Connie,

I am very new to all of this too. My husband was diagnosed in June. My suggestion right away would be to find a new doctor. They are your life-line in so many respects. You must feel comfortable, and confident that they (and their staff) are taking your concerns seriously. Do some research in your area (work or home) and find someone new. Also, check into seeing an oncologist too. Don't accept anything but the best you can find, and for the comfort level you deserve. The Dr. and Sraff should always treat you with respect, and your concerns are paramount!

Good Luck on your quest!

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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