Recently diagnosed & scared

3 months 3 weeks ago #60125 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

Excellent news. The TURBT after the initiation phase is pretty standard, verification of success up to that point.

I did 2.3 rounds of maintenance (was unable to tolerate the 3rd instillation of round 3). My oncologist stopped treatment and stated that the maintenance portion of BCG treatment is new and that originally they only did the 6 instillations.

You will most likely have follow-up cystoscopies every three months for the first 2 years which will then transition to every six months. Observation is usually done for a total of five years (No evidence of disease -NEOD) is what the medical community shoots for.

Again, great to hear and keep us in the loop on your progress.

Hi Grade T1 CIS

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3 months 3 weeks ago #60123 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Had my meeting with my Urologist yesterday afternoon and good news that my cancer is non muscle invasive and he believes he was able to remove all the cancer from my bladder. He wants to start a BCG cycle 6 weeks from my 10/26 TURBT.

A few things he mentioned that surprised me was that he wouldn’t recommend BCG maintenance after the first cycle of 6 weeks. Didn’t realize I would basically have another TURBT to do a thorough check and address any issues after my BCG cycle. He also mentioned a nationwide shortage of BCG.

Thanks to all for the support and words of encouragement through this first phase.

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4 months 1 day ago #60117 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

Thanks for letting us know your status. The wait is always the most difficult (well that and the damn catheter).

Looking forward to hearing about the results next week.

We are with you in spirit, and praying for the best outcome for you.

Ciao

Hi Grade T1 CIS

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4 months 1 day ago #60116 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
2nd TURBT completed this past Monday. Feel physically better after this one then with the first but probably because I knew what to expect. The catheter for two days is always the worst. Won’t have pathology till Tuesday 11/3 and praying for non muscle invasive. Going to be a long few days. Please keep me in your thoughts and prayers. Will provide an update next week.

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4 months 2 weeks ago #60038 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyH

I say any port in the storm - this is a very stressful point in your journey, but have faith that it will all work out.

Keep us in the loop.

Hi Grade T1 CIS

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4 months 2 weeks ago #60037 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thank you Sara Anne, Alan and Donald. Looking forward to my second TURBT on 10/26 with hopefully good news and then starting the regular BCG maintenance. This has been a crazy few weeks with emotions and anxiety all over the place. I saw one post about recommending getting a therapist to help through this and I have started looking. I think it would benefit me for sure.

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