There are a few on here that really know their stuff! You being one of them. I gather it's because you've all been through all of this already. I see you were diagnosed in 08 with high grade. Good for you!!!! Congratulations. It makes me feel better if mine comes back high grade that this BCG stuff really works! There is hope.
On your comment about missing your tumor on the Cat scan. The radiologist completely missed mine, a small papillary tumor. My URO is so thorough he re-read it between the scan and seeing him and said the radiologist was wrong. Pulled up the film and said what I see is a small one right here! He is unbelievably thorough. He was going to scope me any way but, it was before he did that. I also asked if antibiotics (which I had been warned about) can make the pathology report read high when it is actually a low grade issue. He said it didn't make any difference, he personally read it and it was high grade! When he was given the high grade report he even called my wife first on who should break the news as she was an RN in the maternity ward where he infrequently had patients. He respected her enough to do that. She said I was a big boy and could handle the news for him to tell me. Net/net as Sara Anne indicated the experience and skill of most doctors are the most important component of our journey.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Blue-light is not a magic diagnostic tool. Neither is a CT Scan.
If you are a veteran, you may be able to have blue-light done at a VA facility. If you are treating outside the VA, you may have a bunch of hoops to jump through to get just blue-light, and you may need to travel to a VA facility that has it.
Blue light has failed, so far, to identify my CIS that is not seen under white light. It has also failed, along with white light, to show cis even when CIS has been found by random biopsies. The standard of care, as has been explained to me repeatedly, is the random biopsy. I'm not happy about that either. Fact is, CIS can be hard to identify, particularly of is starts to burrow in or for nests. Various institutions are currently conducting Blue light studies - I have been in a study for over a year - the goal is to determinw WHEN blue light will be effective.
Life would be sweet if the popular press' articles on 'cancer advances' stuck to the facts instead of touting the advance as the next sliced bread.
CT rarely shows CIS except sometimes as a 'wall thickening', which is not diagnostic by itself. CT is rather insensitive to small growths in the bladder, and many but not all are missed. The best CTs I have had are with up-to-date software, a 3 Tesla magnet, and very small "slice" distance.
There is a reason for all the tests - CT shows more than the bladder - cytology, is a screening test that is best at suggesting high grade, but with false positives and negatives.
The "Gold Standard" and I hate that term, remains the cystoscopy and TURBT. At least for me.
I understand the desire for blue magic, I had to battle for it, but I gained nothing, sadly. Hopefully others can offer positive results from Bluelight.
What's with this Bleeding ? 6/2015
DX: 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 , round 3
Begin year 4 with cis
Jjbrown wrote: Hello all,
I have been doing some reading online about the new blue light cystoscopy and how it can see cancer so much more clearly than the standard cystoscopy.
When I went to my post-TURBT appointment with my Urologist 2 weeks ago, I had my list of questions as we were preparing to start BCG (to treat my CIS). One question I did ask was about future scopes/TURBT and use of Blue light. Being that I'm at a large HMO (Kaiser), they do not use the blue light (at least in my city), and although a very brief discussion was held on its use, in Summary, the advantages do not justify the time and expense (I beg to differ and wonder if it could help me and others). As is, it takes up to 6 weeks for a TURBT from the time of Cystography.
I'm a big fan of any technology to diagnose to help treat or prevent.
TURBT Jan 2019; CIS
Induction BCG (Mar 19)
Maint BCG (Aug 19)
TURBT Nov 2019; CIS
Thanks Alan and Dave!
If I read correctly, the blue light is fairly new. Maybe it takes awhile for urologists to be trained with it, purchase the equipment etc. It scares me a bit because there are so many stories that the blue light caught something that a regular cystoscopy missed. I personally am a little leary though because my tumor was missed by my CT scan, thank goodness my URO did the cystoscopy or this would have been just festering in me for who knows how Long? It is puzzling to me that a CT scan missed it altogether. Anyway, I love this forum, keeps my mind off things for a while. I have 3 kids, youngest is only 8 so needless to say, Im a nervous wreck. They still need their mom!
Thanks for all the support!