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Bump… REMINDER
Hi All!
Just had cystoscopy this morning (post TURBT – approx 1 year 9 mos) and found a new tumor.
Was feeling confident being so far out post TURBT October 2018 that all would be clear again as in prior cystoscopies.
SO REMINDER, stay on top of follow up cystoscopies!!! So important to catch these things as early as possible.
Waiting for appointment for TURBT. Any thoughts from experienced patients on best practices for individuals who fall into the recurrent category, feel free to share!
All my best.
Jim
10/25/18: TURBT
11/06/18: DX Ta – low grade non-invasive TCC
07/07/20: Recurrence. TURBT (07/30/20)
08/13/20 – 09/17/20 gemcitibine chemo intravesical therapy
12/14/22 – Cystoscopy Recurrence
01/19/23 – TURBT + Gemcitibine intravesical.
01/23/23 – DX non muscle invasive high grade5 Replies-
Jim,
Whether you retain your bladder or not, you will come out of this stronger and more effective in life! I like your attitude and I like the fact you have more concern than worry. Just like the COVID I have concern and respect but, not the fear and worry that so many have.
As we discussed earlier, you won’t know much until the biopsy. All treatable and beatable. From a small chance it is not even a tumor, to low grade wait and watch, to high grade BCG treatment or all the way to a cystectomy….which you are a long ways from that at this time.
Keep posting as you go. We all learn from each other.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
swarmy….thanks for the insight! this is useful information as well. being caught off guard threw me. my mind was just caught on seeing the tumor and didn’t shift to anything else other than hearing my urologist say….”ok, the scheduler will call you in the next few days so we can schedule a TURBT” and my mind thinking it’s back. Didn’t even think to ask about what does this mean from a treatment perspective, follow up perspective, or anything else.
I followed up with my urologist with my questions after getting back home.
Likewise my wife and kids worry more about than I do, or at least that’s my perception. I knew the possibility existed that recurrence was a good possibility, but I think that thought was tempered some because of being a little over a year and a half with clean cystoscopies.
At any rate, thank you again and wishing you all my best. Stay strong.
10/25/18: TURBT
11/06/18: DX Ta – low grade non-invasive TCC
07/07/20: Recurrence. TURBT (07/30/20)
08/13/20 – 09/17/20 gemcitibine chemo intravesical therapy
12/14/22 – Cystoscopy Recurrence
01/19/23 – TURBT + Gemcitibine intravesical.
01/23/23 – DX non muscle invasive high grade
T1-G3 here. After seeing it return every 6 +/- months after 3 turbts & BCG series, I was resigned to this is the new me and was actually settling in to that cycle. Then switched me after going bad on BCG over to Gemzar am now had 4 each 3 month scopes with maintenance chemo and no tumor return…. 1 year. I know it will be back….. had resigned myself to that….. now adapting to the world of 3xmonth scopes + 3 weeks Gemzar. Guess my point being, with my rambling southern vernacular, that I never expected much success based on the failures and try maintain mindset this is the best day of my life & Lord willing tomorrow will be a better day. I’m just thankful for 1 more day. I consider myself very lucky doctors even caught mine in time to buy me some more time. My wife worries more than me.
Alan, thank you for the kind and good words! As always like you say, 1 day at a time. Always hope that it is benign! Seeing the tumor today during cystoscopy caught me off guard so I wasn’t thinking to ask detailed questions. My urologist went right to TURBT and getting OR booked and resection scheduled. I have followed up with questions including BCG etc.
10/25/18: TURBT
11/06/18: DX Ta – low grade non-invasive TCC
07/07/20: Recurrence. TURBT (07/30/20)
08/13/20 – 09/17/20 gemcitibine chemo intravesical therapy
12/14/22 – Cystoscopy Recurrence
01/19/23 – TURBT + Gemcitibine intravesical.
01/23/23 – DX non muscle invasive high grade
Sorry you have had a recurrence. While I have stayed free I do have a golfing buddy that had it come back. He was low grade both initially and now. It is still waiting and watching for him. Should your new TURB with biopsy I have learned you simply have to take each day one at a time until that pathology comes out. Many times BCG is done even it is still low grade coming back a second or 3rd time. Sometimes with an additive like interfuron. Lastly, there is still a small possibility that it is NOT cancerous?
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sign In to reply.
