Recent T1 MO

3 years 3 weeks ago #55073 by Atlanta51
Recent T1 MO was created by Atlanta51
New member of the group. 66 year-old, causasian male, recent diagnosis of T1 MO, two tumors removed, high grade papillary urothelial carcinoma, invasive into lamina propria, but muscularis propria not involved (i.e., nonmuscle-invasive) and biopsy of areas adjacent to tumors did not identify carcinoma,. To date, one TURBT, another pending soon and scheduled meetings with an oconologist and urologist with advanced urologic oncology at Winship Cancer Institute, bot well recognized in the Atlanta community.

I am hopeful I am a candidate for BCG and nervously awaiting recommendations and a treatment plan.

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3 years 3 weeks ago #55078 by sara.anne
Replied by sara.anne on topic Recent T1 MO
Glad to welcome you, and sorry that you are here!

You are at a good center for treatment....they should really know what the are about at Emory.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 3 weeks ago #55079 by JoeSmo55
Replied by JoeSmo55 on topic Recent T1 MO
glad you found this place- many people here with alot of practical knowledge. You will have questions, none are stupid. i am a 63yo white male. I had a golf ball sized tumor removed on June 2017 lamnia propria invasion, no muscle invasion, had a second turbt in August,they cleaned up the original site and found sine small stuff thar was missed at another site. i just started my 3rd round of bcg.

the good news is you started the healing process. feel free to ask any quesrions of me or others here that are ahead of you.... i am not a medical professional, but will tell you anything about my experience if it helps.

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3 years 3 weeks ago #55085 by Atlanta51
Replied by Atlanta51 on topic Recent T1 MO
Thank you.

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3 years 3 weeks ago #55086 by Atlanta51
Replied by Atlanta51 on topic Recent T1 MO
Joe, thank you. If you are comfortable sharing, I would like to more about the effects of your BCG treatment (side effects, suggestions, etc.).

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3 years 3 weeks ago #55087 by JoeSmo55
Replied by JoeSmo55 on topic Recent T1 MO
my side effects(not everyone experience the same):

Round 1 (6 weeks)
No symptoms first 3 weeks, wondered if i was getting a placebo. Next 3 weeks i staeted to experience fatigue, feeling really run down, so i laid low on treatment day and the day after.

Round 2 (3 weeks)
week 1: mild fever, 101 until 10pm. really tired.
week 2: no fever, but 4 hrs after instillation ( when they put bcg into bladder) i started urininaring a little blood. not much, but urine was pink, lasted about 2 hrs. really tired for a few days.
week 3: no fever, but blood in urine again, lasted about 4 hrs. called in to asvise of blood. they said its a common side effect, and if it got worse- to recall.

Round 2 comments: fatigue started quicker, they told me there is a cumulative effect, and side effects could intensify as time goes on. The blood freaked me out as last time i had blood in urine was juat before they found the tumor. i also lost my appetite and lost 15 pounds during this round.

Round 3 (3 weeks)
Week 1: Oh boy - they were right about the cummulative effect, 101 fever about 6 hrs after installation, and lasted through the night. if fever would have risen higher or lasted longer, i would have called in. no blood.

And i await week 2.

Other side effects i experienced: after holding bcg in for 2 hrs. i was surprised first urination wasnt much. i now staet drinking water at 1hr 50 min, and drink four 16oz bottles of water while i am resting on the sofa. (preplan some movies or binge watch a tv series). i find that once i start urinating, for the first 2 days, i do not have the bladder capacity i used to. it comes back after a few days.

After 1st urination, i sometimes experienced a mild burn. nothing major, again a typ symptom.

These were “my” symptoms to date. Yours surely will be different. they will go over all of that before you start treatments.

hope this helps. BCG treatments is the typical starting treatment protocol for non muscle invasive bladder cancer. my urologist called it “the gold standard” in a medical article.

Good Luck my friend!

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