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BCG

4 years 10 months ago #45779 by rbmc
Agreed, sounds like things are right on track for you. Thanks for the positive reinforcement. Remind him (yourself) that this this a tricky, sneaky little devil and future monitoring is an essential part. Looking for, and knowing, those "details" may help the patient (caregiver) better understand any plan of attack. As someone mentioned elsewhere, it's a TEAM effort.
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5 years 1 month ago #45432 by sara.anne
Sounds as if he is doing fine...right on schedule!! The BCG "reactions" you describe are normal. Sometimes they do get a bit worse the further along you go. His body is reacting to the BCG...just as it is supposed to. These reactions start out fairly mild (thank goodness!) and, as the body's immune response builds, they can become more noticeable.

My urologist did prescribe a CT-urogram (a CT of the urinary tract system and kidneys) sometime during the diagnostic period. And I think he said he would get another at two and five years out. I am now five years out, doing great.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 1 month ago #45431 by itsamama
Update: BCG Round 2 (3 treatments) has been completed. Reaction: not much more than round 1. This round, as before, some tiredness & a mild fever, the day of the BCG.
Two questions :
1) should we be concerned that his reaction was again, mild?
2) I just read that others that had non invasive bc with CIS, like him, have had scans for mets (& found that the bc had indeed escaped the bladder). He has not had any scans since before his diagnosis.
I have not discussed any of this with him, per his request. He is adamant about not knowing details.
Please. Help. Again.
Thank you!

DH (Dear Hubby)...
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013

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5 years 4 months ago #45224 by sara.anne
It is true that being an "educated" patient can have advantages!!!

Sara Anne

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

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5 years 4 months ago #45213 by CatherineH
That is wonderful news! Best wishes for the same when the cytology comes back as well. And, thank you for sharing your positive VA Med Center experience. I'm sure that will help other vets looking for information and guidance on what may be available to them.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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5 years 4 months ago #45212 by itsamama
Very good news to report: it's been 6 weeks since DH's 6th BCG. He went for a cystoscopy today & while there is an area that is still healing from the TURBT, the urology oncologist was very encouraged...& so are we! We await the cytology report. Maintenance BCG will begin in 6 weeks (is that the normal time frame?).

If I may take a bit more of your time, I'd like to share something pretty amazing :
We received a call from VA MED CENTER/OHSU nurse/cystoscopy scheduler, several weeks ago..she noticed that we had requested a 2nd opinion of the TURBT pathology, from Johns Hopkins, & she commented that since we seemed to be on top of this, would we prefer to choose the doctor that was to perform it or were we ok with a Resident. HELLO!!! Of course we would like to choose. She had 6 to choose from...one was a urology oncologist (with lots of OHSU, BC experience). No brainer!!! YAY, GOD!!!

YOU helped make this possible, with your excellent recommendations. Thank you for your caring, compassion, & time. Thank you! Thank you! God bless each of you on your road to good health.

DH (Dear Hubby)...
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013

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