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tumor recurrences
My initial TUR was in March of 1998. The diagnosis was Ta, low grade TCC. I had recurrences at almost every cysto for the first three years. After that, the recurrences slowed to about every nine months. Finally in 2002, I graduated to a six-month cysto schedule. Whenever a growth recurs, the doctor changes back to a four-month schedule.
Recently, I went over a year without a recurrence, but that was short lived. Because of the low stage and grade of these recurrences, they are not a serious problem. The doctor removes them via fulguration during the cysto.
Except for the cystos, my life is normal. ;)
~Fran11 Replies-
Artie, You are welcome for refrsshing your memory. I hope others hit that link also as many are not aware of the newest recommendations. I am sure the great majority of us who have had many low grade papillary recurrences resulting in TURB’s or fulgerizations are pleased to see the results of the long term tests on patients who had prior 3 and 4 recurrences and treatments eager to pariticipate in the watchful waiting option rather than TURB or sugery presented to them from the innovative urology group at the Univeristy of Miami and also Department of Urology, Hadassah University Medical Center, Jerusalem, Israel. Very impressive and convincing findings resulted from those participants. If you could read the entire story of that testing and surveillance done at University of Miami rather than just reading the abstract, you too would feel confidant (if your b/c historyand recurrences are similiar) to do watchful waiting and spacing your cysto’s at longer intervals – as would many others, in my opinion. Rosie
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Right! Thanx for refreshing my memory.
I’ve read this info before and thought it something still in testing stage. Actually, it would be very good for us (to have less fulguration and TURs).
But I would wait until doctors at MSKCC and other major centers assured us this was a viable option. (Personally, after more than eight years of treatment, I feel perfectly safe waiting a few extra months before having fulguration.)[font=arial]
~Fran
Artie and Hope, watchful waiting is NOT for high grade but for low grade papillary recurrences rather than having immediate TURB or fulgerization. In some cases, depending on the location of the tumor, fulgerization is precluded. Low grade papillary has been shown to grow very slowly almost never becomes invasive. See this link on bladder cancer web cafe under superficial bladder cancer which tells of the long term tests, survelliance and conclusions on watchful waiting and when it is suggested. Also, I have seen many reputable medical personnel encourage mytomycin immediatly after TURB for papillary TCC but BCG for CIS. My urologist has not done the mytomycin either but will when I have my next TURB. http://blcwebcafe.org/superficialblca.asp
Hi Hope,
First let me address the BCG question. Doctors have found that BCG is not effective in low grade, low stage TCC.
Right now I am on a four month cysto schedule, but becasue I never go more than six months without seeing my urologist, my doctor finds my tumors very early and uses fulguration to burn them out. This procedure (I assume), is safer than a TUR, especially since there is no anesthesia involved.
As for the mitomycin, my doctor did mention it once, but never followed through with it. Honestly, I am not sure why she hasn’t tried it and I never remember to ask about it.
You said you are not sure ‘about when you do a drug and when to do surgery’. I feel certain they always use some surgical method to remove tumors. The drugs are used to help prevent new tumors from recurring. And again, that is only at certain stages.
“Watchful waitng” seems a fairly broad term. I really think it is meant for higher grade tumors. Sort of ,’let’s wait and see before we do a radical cystectomy’.
On the other hand, maybe some folks refer to the standard practice of scheduled cystos to see if a new low grade/stage tumor develops, as ‘watchful waiting’.
~Fran
hi ALTIE
YOUR INFORMATION WAS GOD SENT THANKS ALOT FOR SHARING
MY QUESTION TO YOU IS ALL THESE 8 YEARS WHY DIDN’T URE UROLOGIST TRY TO INSTILL A DRUG LIKE MITOMYCIN OR BCH ?
BECAUSE I AM VERY CONFUSED ABOUT WHEN TO U ADMINISTER A DRUG
AND WHEN DO U DO JUST SURGERY AND NOW SOME UROLOGISTS DO
WATCH FUL WAITING
I am currently doing watchful waiting monitoring of my present superficial recurrence first seen in February 2006 and again June 2006 rather and rejecting yet another TURB. I now feel confidant spacing the cystoscopies further and further apart and declining surgical intervention. After five years, 4 recurrences and 3 TURB’s; information provided initially by Wendy Sheridan; additional research, information and monitoring my own recurrences I am convinced the frequent invasive cystoscopy, surgery and the stated risks involved, post surgical discomfort are more of a threat to my health then my papillary superficial TCC at this time. You can read my story and update on Tales from the Trenches under Rosie. I would be glad to communicate with anyone interested in this approach. Rosie
Hi altie,
Thank you so very much for your reply and God bless you for easing my mind tremendously ! That’s the true value of this forum and I will be sure to do the same for others whenever I can.
Hello Hopeful.
You said, “Did any of your recurrences present more tumors or polyps that the one before?” Yes, many times. Sometimes there would be one or two, then the next time three. Once I had six!
My doctor – from one of the best cancer centers in the world, says the same thing your doctor says! Pretty much that it’s a “nuisance” and “not to worry”.
I have complete faith in this…especially since I have done much research over the years and know this to be true.
Very few low grade tumors ever become invasive. Just take care to always have your follow-ups.
If you like you can click on my email and I will tell you the hospital and doctor.
~Fran
He removed one polyp in the office and will do the other in 4-7 weeks after which I will have “medicine” (probably BCG) instilled. He said that will cut the chances for recurrence drastically.
Is your urologist going to take those polyps out? I have my first cycstoscopy coming up in 2 weeks, after tumor removal and diagnosis of Ta, Grade 0 in December ’05. I was wondering if something small came back, if they will take it out or just want to be “watchful”. I’m not sure I want to walk around another six months, knowing something is there…
TaG1 12/05
3 recurrences
BCG started 9/09
Altie,
Did any of your recurrences present more tumors or polyps that the one before? I just had my first cysto after TUR of one tumor and now there were two new very small “polyps”. I also had low grade, noninvasive but I am extremely worried that this means it’s getting worse. My urologist just called it a “nuisance” and said not to worry.
Thanks.
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