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Ta Grade 3 Questions
Hi,
My name is Connie and I haven’t visited this site in about about 6 years.
My history:
1998 — Ta Grade 1
Treatment: TURB2000 — Ta Grade 2
Treatment: TURB + 6 wk BCG7/2007 — Ta Grade 3
Treatment: Biopsy, electrofulguration in office, and 3 wk BCG to come; quarterly cystoscopy thereafterI 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
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26 Replies
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Connie,
My sister also had a CT upon her dx of Ta,G1, single tumor. She goes to MSK. I once asked a uro-expert why this would be needed and he said something like “I can’t presume to question why a doctor performs a diagnostic test as every case is individual”. That’s not to say this isn’t a normal way to stage someone, because it is.
Take care,
Wendy -
Connie,
I had a catscan, blood tests, x-rays etc. prior to any TURB after the tumor growth was seen during a cystoscopy. After two years my doctor and many doctors recommend and did an IVP with contrast to be sure there is no growths in the ureter or kidneys. Rosie
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I got a copy of my 2nd opinion pathology report yesterday. It states Grade 2 superficial urothelial cancer, but in parentheses says low grade according to the 2004 classification. I guess they are using both systems to be clear about their opinion. Now I’m waiting for the 3rd diagnosis so I can get some kind of consensus here. I’m wondering… are CT scans routinely done for low grade urothelial cancer? I can’t seem to find anything on this. I know during my past two episodes of bladder cancer, a CT scan was not recommended to me.
Connie
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This is why very soon tumors will be have one of 2 grades and that will be
G1 or G3 so there will be no middle one anymore either bad or good ,aggressive or not. Joe ;) -
Hi Connie,
Just a thought here, from my own experience….
When my bladder cancer was first dx’d – I got the path report from the Dr and he “explained” it to me ( it was T2 grade 3 on the report.). However, I called the pathologist to ask about how sure she was of the stage and grade. She then explained she was certain of the grade3 micropapillary, but it was staged at stage 2 only because she exhausted the material. At cystectomy it was actually stage 3A. Please don’t think I am trying to say your case is understaged like that, what I am saying is that the pathologist can explain more than the dr can about how the path report actually is. That make sense?
Best wishes to you, I think it is good you are your own best advocate, Holly -
Sorry, I hit “Post” before finishing. I was just saying that I owe over 10 times as much for my cysto this year as I did a couple of years ago.
So… Grade 2 and 6 weeks BCG … or … Grade 3 and CT scan, along with cysto and biopsies in operating room… TO BE CONTINUED
My heartfelt appreciation, again, for making me feel less alone in this.
Connie
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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.
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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
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
[quote author=ConnieOnAQuest link=topic=1092.msg7847#msg7847 date=1188834026]
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.
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.
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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.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
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 http://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
[quote author=ConnieOnAQuest link=topic=1092.msg7698#msg7698 date=1187966239]
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.[/quote]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.
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?
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 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 hope that is not necessary.
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.
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.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
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
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