Blue light cystoscopy & standard cystoscopy

My urologist, at a major medical (teaching and research) center, will do blue light cysto after my next round of 3 BCG treatments. He says it’s much better for seeing CIS tumors, which is what I had prior to TURBT. He also says an advantage of being at this big hospital is that I won’t have to worry about a BCG shortage compromising my treatment. Best wishes to you. Hope your talk with the doctor goes well and you find comfort in the answers you get.

@txtim
Thank you for your helpful response. My urologist installs the BCG in his office (as many do) and as I view the screen, I can see that he is searching but may not notice all the tiny tumors. The improved blue light cystoscopy method can light up anything which goes unnoticed and, of course, this would be preferable.

I hope your next cystoscope goes well. Sending my good wishes.

Blue light is specifically purposeful for detecting of CIS not visible to the MD's eye. It lights up and can then be removed. It still does capture 100% as CIS is extremely tenacious. If it is found all over, RC (and more rarely EVP) is recommended. NMIBC can still go systemic sadly. Not common but it happens. More often when there is also high grade papillary.

Blue light is very expensive, expansive, and time consuming. This is why NCI centers more frequently use this than regular hospital systems. Sadly, the treatment and capabilities is very uneven across non-NCI centers.

Thank you @jaxfl for your response.
My NIMBC is low-grade, however I see what you are saying appears to be the case. Following my TURBT, the surgeon suggested I have no further treatment at that time since the tumors were removed and then be seen by my urologist who decided to wait 3 months to see if more tumors developed.

Well, after a cystoscopy five more tumors appeared and were burned off, one sent for biopsy (showed "neoplasm") and then I was put on BCG regimen (already took 3 of the 6).

Unfortunately, I am already anticipating from the many stories I have read thus far that this may become a routine occurrence and the word "tenacious" certainly applies.

I am wondering: how many are too many? How many cystoscopies, then tumor removals should one be subject to? There must be some negative aspects when these procedures are repeated continuously - not only psychologically/emotionally but some damage to the bladder itself?

Back in 2006, I had endometrial cancer - had a radical hysterectomy and oopherectomy and after a few doses of radiation, was cancer-free. Now, looking back, although frightening at the time - it seemed easy in comparison with having bladder cancer.

I have great admiration for the bravery, courage and inner strength demonstrated by the members of this support group. I hope each realizes success.

@deidre77 Bobbie it is a personal decision how much of this process for recurrent bladder tumors to endure. A couple of years was it for my husband and now he lives with a neobladder but is cancer free. I know of others with less aggressive tumors who follow the TURBT pattern for many many years to save their bladder. Has there been any discussion of an immunotherapy for treatment of your cancer? My husband did try Keytruda but it was also a failure like BCG. His was highly aggressive and muscle invasive. The longer you keep after this, the more new therapies will be approved for treatment. Radical cystectomy is a huge surgery and life changing. Keep kicking the can on down the road and something else may become available.

@sepdvm
Thank you for your response and encouragement which I appreciated.

I have only recently begun to have the BCG treatments (only 3 of the 6 so far) as a result of the 3-month cystoscopy (5 new tumors were discovered and burned off) following my initial TURBT. When I first visited my urologist (different doctor than the surgeon) following the surgery, I predicted that there would be new tumors found and I was, unfortunately, correct.

Considering I recently had a colon polyp which I had termed (the "mother" of all polyps) because it took the gastroenterologist 3 separate procedures for removal (it was so large) and add to that fact that I have thyroid polyps (benign thank goodness) and also had lung nodules (which fortunately somehow dissolved), I feel that my body is like that of a ...hmmm... how can I put it... a successful farmer. While I may try to add some levity to this situation, I feel a bit let down and this is why I am mentally preparing myself for perhaps a more extreme outcome. I am also no stranger to cancer as I had endometrial cancer 20 years ago (radical hysterectomy, oopherectomy and radiation).

I am aware as you said that many have gone through the continual process of tumor discovery, removal and then placed on a particular therapy. Each person must judge for herself/himself how much emotional and physical fortitude they possess. Here I am, a beginner so to speak on what I anticipate will be a long and arduous journey and don't quite know how I will respond. I so want to banish any negative thoughts which may enter but I am a reality-based person.

I hope your husband is doing well with his neobladder and it must be a reassuring relief for him to realize that he is now cancer free. You seem to be a very supportive wife.

Again, thank you and I am sending my good wishes to both you and your husband. Be well.

From my personal observations based on BCAN/Inspire reports, long term BCG treatment to CIS (and perhaps papillary) can lead to distant spread (PT4M1+) sadly in some patients. Cutting it all out with RC has the best outcomes to date. However, the new EVP treatments in high grade neoadjuvant settings appear promising also.