My story may help others

8 years 4 months ago #49825 by GKLINE
Replied by GKLINE on topic My story may help others
It appears that your Dr. followed the standard protocol when blood is found in urine.
They did an ultrasound, followed by a cystoscope and then a TURB and a followup TURB.
In your case, you were very lucky that they "got it all" and you could have BCG treatments.

NOW !

Follow all of your Dr's orders and get in for your appointments. This bc is a recurring kind of creep and it does come back. Even years later, you still have to be vigilent and get checked.

But now is a time for celebration and a check of what is important. Family.


Cheers!

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 4 months ago #49817 by murray55
Replied by murray55 on topic My story may help others
Great news! ALways happy to read success stories especially from T1HG, which what I have.

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8 years 6 months ago #49408 by OldEngineer
Replied by OldEngineer on topic My story may help others
Excellent news indeed, congratulations and may such news continue going forward!! As to the probability of recurrence, when I spoke to the specialist at Sloan Kettering, I asked whether there was any way to genotype high grade tumor cells to better establish "the worst of the worst" so to speak and thus better identify probability of recurrence. Answer I got was "not at the moment," not enough data yet. Apparently the average recurrence rate at five years varies from 30% to 50% assuming you go through BCG immunotherapy; somewhat higher if just mitomycin-C therapy. The size of the tumor at first diagnosis apparently is one of the factors in predicting recurrence - the larger it is, the higher the probability. Anyway - just passing that on to you. I am in the same boat - having my second TURBT in three days (first one 4 1/2 weeks ago, T0 or T1 high grade (two pathologists graded it differently as T0 or T1 lol) for the same reason as you cited - to confirm it is all gone (fingers crossed!). Learning more about bladder function than I ever wanted to know lolololol.....

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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8 years 6 months ago - 8 years 6 months ago #49403 by DougG
Replied by DougG on topic My story may help others
Woo Hoo!!! Glad to hear your good news from September 4!! Sounds like you are enjoying your new grandson. Congratulations!

Best wishes,
Anita

Anita
Forum Moderator
Caregiver

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8 years 6 months ago - 8 years 4 months ago #49400 by Cynthia
Replied by Cynthia on topic My story may help others
Thanks for sharing sometimes hope is the biggest gift we give each other here. Now that you are here I hope you stick around. It is a great help to the newly diagnosed to hear from someone that has been in their shoes. Congratulations!

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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8 years 6 months ago - 8 years 6 months ago #49396 by tone
My story may help others was created by tone
At 53 went to the Dr with visible blood in the urine, sent me for an ultrasound and it show a tumour 1.4 cm.We go to the urologist/surgeon and of course had a TUR. When I went back to see him he said it was a nasty one T1 HG so we going to repeat the TUR and make show is all out. Back to see him and good news nothing left, he said this is as good as it get, OK.
Weekly BCG for 6 weeks, repeat TUR and all good. Monthly BCG maintenance for 3 month and then no more as the is a BCG shortage but urologist happy with cysto results, so cysto in 3 month again as per protocol. So after 3 month of no maintenance treatment at my cysto appointment urologist suggested installations of Mitomycin as an alternative treatment with very good outcome so I did get monthly Mitocycin for 9 month with flexi/cystos every 3 month.
On the 04/sep/2015 (2years and 3 month after first diagnosed) had a rigid cystoscopy with a non recurrence result. I was very happy to hear those words coming out the urologist. We are going to continue with cystos every three month.
I do read a bit and I get confused about chances of recurrence in my situation, so I take one day at the time and thank God for one day more everyday. I am 55 now and have a beautiful 2 months old grandson. Life is what it is, we can not changed it. Thank you for reading. God Bless

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