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New user with T1 G/3

10 years 2 months ago #21803 by Rosemary
Vince,

I am T1 G3 also. My Uro kept sending me back until there was enough muscle tissue for a good
sampling. This is of utmost importance!!

My recommendation based on my own experience is to go get a second opinion at a teaching hospital.
Ask a top Urological Surgeon to do the biopsy and make sure there is plenty of muscle tissue.
My second opinion doctor at UNC Hospital in Chapel Hill was part of a multidisciplinary team which
means that after my biopsy and CT scan, a whole bunch of different head doctors from various departments
(Oncology, Radiology, etc) sat around a table and discussed my case to form a consensus on the safest direction to take.

I urge you to get a second biopsy with a deep muscle sample. The fact that you are having recurrances while on BCG is not such a good thing with your Stage and Grade.

Your Bud,
Rosemary

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

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10 years 2 months ago #21799 by Cynthia
Vince,
First off please remember that it is always advisable to have a second opinion done at a center that does a high volume of bladder cancer. What follows is some reading that may help.

AUA 2008 - Prognostic Value of Re-TURB of High Risk Non Invasive Bladder Cancer

http://www.urotoday.com/287/conference_coverage/aua_2008_bladder_cancer_highlights/aua_2008__prognostic_value_of_returb_of_high_risk_non_invasive_bladder_cancer.html

The Best Treatment for High-Grade T1 Bladder Cancer is Cystectomy - Abstract
[url]
http://www.urotoday.com/37/browse_categories/bladder_cancer/the_best_treatment_for_highgrade_t1_bladder_cancer_is_cystectomy__abstract.html[/url]

AUA 2006 - High Grade T1 Bladder Cancer: Who Should Undergo Early Cystectomy?

http://www.urotoday.com/browse_categories/bladder_cancer/aua_2006__high_grade_t1_bladder_cancer_who_should_undergo_early_cystectomy.html

E-medicine Partial Cystectomy
[url]
http://www.emedicine.com/med/TOPIC3043.HTM[/url]

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 2 months ago - 10 years 2 months ago #21797 by Webs
Vince,

All I can say is get a second opinion. Your life is nothing to full around with. While they briefly thought of giving me a partial cyctectomy, until they confirmed there was muscle involvement, they decided a radical cyctectomy was my best chance at survival. It is very important to have a good doctor and a good pathologist.

Wishing you the best

Webs

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10 years 2 months ago #21793 by Patricia
Vince...i'm concerned that no muscle tissue was present for evaluation at your TURB. I think there is quite a controversy on partial cystectomy. I remember my local uro wanting to do one on me and when i went for my second opinion to MSK in New York my surgeon there just rolled his eyes ........
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HMVSN6-3M&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=9079fbf7bb6eec6a6e2dddea63dc0fb7
I would maybe seek a second opinion and a second TURB with muscle tissue present for pathology.
And i don't know of one person who has to wear a catheter after receiving a neobladder or Indiana Pouch....they may have to catherize..especially the females......but nothing indwelling.
Pat

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10 years 2 months ago #21792 by Cynthia
It is interesting that in one day I should get two email dealing with partial cystectomy. Vince gave me a call and we talked he is now dealing with facing a second TURB and is worried about the possiblility of Radical Cystectomy. I have told him that getting a second opinion is important to easing his mind on this and helping him make an infomed decition.

No..it was a T1 superficial tumor, but high grade 3-4/4, acording to the biopsy..It said 'there was no muscle tissue identified in the sample to be evaluated." So, it seems to be superficial..even the URO said that.
We started BCG, but the bleeding came back..they did another cytoscope exam,
and he saw a tumor.. I am guessing it came back..so we have to do another
TURB.
On the yahoo cancer cured group, there are people who say theirs came back
twice, and the UROs continued to remove them (TURB)< and continued the BCG,
until the tumor did not come back..One person has has been tumor free or 2
years. So my understanding is that sometimes they do come back ( maybe not
all of it was taken out the first time), but eventually can be stopped.
I am thinking ahead...if the BCG cannot be resumed again, what my options
would be. If the tumor is confined to the same area of the bladder, it
would make sense to do a partial cystectomy, and maybe follow up with BCG
for the rest of the bladder. Online, I see many sites that say this is a
successful procedure. they even do it laproscopically at the Chapman Medical
center, in Ornage County, Ca., but my health plan would not cover
them.That's why I asked your opinion re a partial cystectomy. My URO does
not seem big on the idea. But as a male, I undertsnad that a total removal
can have complications later on..he even mentioned I may have to wear a
catheter..Others say you can be normal within a few weeks, so I am
confused...to me, .the best first option, if BCG cannot be resumed, would
be to do the partial, OR intravesical chemo..but on that I consulted
with a regular Onco,and she pooh poohed it, saying I would need "full body
chemo", which I do not want to do at this point. On your website ( I
believe), its says this is even more effcetive than whole body chemo, and I
am sure it would be cheaper, since there is no need for hospitalization, or
doing chemo or 6 hours at a a time!! Plus, less toxic


Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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