Suggestion those with superficial non invasive

16 years 5 months ago #10112 by wendy
Hi Rosie,

Good points I will have to digest...

About CIS, in my understanding the only time CIS is less dangerous is when it shows up alone, without concommittant TCC/tumors. But that diffuse or focal also counts as to aggressiveness.

I bet you that between themselves, uros say, grade II low grade or grade I low grade; or grade II high grade or grade III, because it's a mind set that takes a while to overcome.

But I also suspect calling a former grade II "high grade" is the safest way to deal, as it is still cancer we're talking about and it's probably best to err on the side of caution. Just my opinion.

Take care,
Wendy

Please Log in or Create an account to join the conversation.

16 years 5 months ago #10100 by Rosie
Wendy,

Since the grading system is no longer stated as TA grade 1, 2, or 3 but now states TA low grade or high grade it becomes harder to make the distinction of watchful waiting, mitmycin, BCG etc if someone is looking to see their grade in a pathology report. Since papillary transitional cell carcinoma (TA)is a different type of bladder cancer than Carcinoma in-situ (TIS - CIS)it would be to everyones advantage to first understand those differences so as to be best able to decide their course of action for treatment based on the most current research, application and updates. Not all urologists are up to date with the newest findings and treatments so it is up to us, the patients, to be sure we are. I just learned through this thread about the different types of TIS-CIS focal, diffuse, multifocal which seems to also be important to distinguish before deciding on which action to take. I have posed a question to Dr. Soloway for November 12 webinar asking how a grade 2 TA is now classified. Is it always classified as a high grade? Rosie

Please Log in or Create an account to join the conversation.

16 years 5 months ago #10034 by wendy
Rosie et al,

I have this 'article' I (re)wrote, simplifying what Ta,G1 means, what do you think?
And Dan, you are right, T1 tumors and CIS are different and actually fall more into the 'invasive' category. But...do we need to separate even further on the forum?

Maybe I'll put this up as a reference for this category, and make one similar for CIS, multiple and T1-ers, for new forum members, what do you think?:

Papillary, low grade, low risk: stage Ta, grade 1)
Low grade papillary tumors are the most common of all bladder tumors, and make up about 80% of all diagnoses. Although they are sometimes referred to (incorrectly) as polyps-which are actually quite rare, these papillary tumors are actually a form of transitional cell carcinoma, or TCC. They are often referred to as “superficial” tumors because they do not penetrate beneath the inner lining of the bladder.

Papillary tumors are at low risk of progression to invasive cancer, but have a high risk of recurrence. Recurrences are almost always of the same tumor type. Conservative treatment with tumor removal (transurethral resection]) as the main treatment is acceptable. If no recurrence is seen follow up can be extended to yearly as opposed to every 3 months.

Sometimes recurrent, low grade Ta tumors can be fulgurated as an out-patient.

New investigations are suggesting that Ta, grade 1 papillary tumors do not necessarily need to be immediately removed every time they re-appear. The reasoning is that the repeated surgeries them cause’s wear and tear on the bladder, these tumors are slow growing and the threat of spread is virtually zero. The “watchful waiting” approach is beginning to catch on as doctors become more knowledgeable about the risks and benefits. Most people who become newly diagnosed with a bladder tumor could not imagine the idea of leaving it in….but some educated survivors are doing just that.

New guidelines in the field of intravesical chemotherapy are urging urologists to instill a chemo drug into the bladder immediately after removing the tumor. Some recommend it for Ta, grade 1 papillary tumors while others save this for tumors in a higher risk category such as “grade 2” or when there was more than one tumor found. This has been shown to delay the recurrences, with the benefit of treatment extending to about 2 yrs.

Not all doctors agree that this is needed for Ta, grade 1 papillary tumors who are newly diagnosed, and might not suggest this treatment approach unless there are numerous recurrences, or if the tumor recurrence shows more than one tumor on follow-up.

Wendy
Disclaimer: I am not a doctor, nor do I play one TV! The references for the above information can be found on the main site under the 'superficialblca' pages.

Please Log in or Create an account to join the conversation.

16 years 5 months ago #10032 by wendy
Hi Gang,

Great thread. Interesting. We have had a long running email group, and every so often the idea gets thrown around to separate into 2, due to the silent majority of Ta,G1-ers getting terrified. But in the end the votes always were to stay together as one. So we do.

The forum is a different story and obviously was needed, as is the categories for caregivers, etc. and it's grown a LOT faster than the email group did. The difference I notice is that the old email group is more research oriented, maybe more educated about options and pro-active than the people who sign up here as newbies. But it doesn't take long before newbies here become old timers with good stuff they share. The two different platforms have their places, the email groups are getting very old fashioned now. And our goes back to '98. It's like family now.

BTW, the 2 populations don't mix, aside from a couple of cross-overs.
Wendy

Please Log in or Create an account to join the conversation.

16 years 5 months ago #9485 by cas
rosie,

i just read you post and it makes sense. please read my post under newly diagnosed (my dad just diagnosed) sometimes too much info is not good, hope to hear from you.

claudia

Please Log in or Create an account to join the conversation.

16 years 5 months ago #9457 by Rosie
DAN, This is the first time I (and evidently others) have seen this reference to various types of CIS and associated aggressiveness. If that particular study information on CIS is confirmed it is certainly some information everyone with a CIS diagnosis should have. I too think of bladder cancer much more prominently since I have been on this forum but at the same time have learned so much to my benefit regarding the newest treatments and stats. I also believe, and hope, I have been of benefit to others with a similiar pathology from my 7 years experience on this BLC journey. Until I returned to this forum, I was not aware to investigate and research the use of Mitomyocin at TURB by many cancer centers and urologist to "kill" possible reseeding and recurrence. I will be able to confirm or deny the viability of the use of Mitomycin on myself as I had it for the first time after my last TURB (my 5th) 9/19/2007. Rosie

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne