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First Follow-up Cysto…Red Spots or CIS?
Hi Friends,
Diagnosed at T1/CIS back in January, and today just had my first follow up cysto after completing the initial 6-wk BCG induction series in early Apr. Uro pointed out several red spots in my bladder on the cysto monitor and wants to schedule another visit to take biopsies. Hopefully the red spots are just continuing BCG inflammation, but if they turn out to be CIS, what are the recommendations? I would think at least another round of the BCG would be in order before classifying this as a BCG failure. I expect my Uro will again recommend an RC. Thoughts?
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma3 Replies-
Mike,
we are on a similar course. Original Diagnosis was papillary & CIS. 6 BCG and I was clear of cancer – for 2 months – when the “red spots” turned out to be CIS again.After a lot of discussion it was decided to do 6 more BCG since biopsies showed the CIS to be on the surface. In 6 more weeks the doc will take a look. If clear doc wants to do 6 mos of monthly maintenance then reevaluate.
Having been cleared by cystoscope and cytology previously, then un-cleared by tissue pathology, I disagree with Doc and want to do another turbt with random sampling. It will be done my way
. I like the idea that BCG can be the answer for many, but I am more focused on taking more radical steps before there is a high chance of it going invasive. I don’t like reading that a high number of “non-invasive” cases prove to be invasive after a RC is performed.
Sometimes I feel that deciding when to consider the RC is like playing at the craps table. Am I going to walk away with the safest win, or keep hoping pushing my luck.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Thanks Sara Anne,
My Uro purposely waited 3 months after completing my 6-wk BCG course to do the cysto in order to reduce the risk of BCG inflammation confounding the results of the cysto. Hopefully it is BCG cystitis as you describe. What remains unclear to me is when is the BCG considered a failure, and it’s time to pull the trigger on the RC?
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma
It is not uncommon to get a bit of a rash after BCG…..it is sometimes called “BCG Cystitis.” I had it and my uro took a couple of quick samples OUCH in the office so that we didn’t need to do a TURB. This confirmed that it was from BCG,.
It is is indeed CIS returning, you might choose to do another set of BCG treatments with interferon. BUT you would want to be watched very closely, as CIS is not something to fool with.
My uro has always told me that if the time ever comes that he recommends an RC, he would insist that I get a second opinion elsewhere. You might keep this in the back of your mind.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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