Recently Diagnosed

3 months 4 days ago #60503 by Skyking76
Recently Diagnosed was created by Skyking76
Hello all,
I'm a 67 year old man out here in Orange County CA, who has never had a serious illness before, am on no medication.  In Mid-October, I had an episode of very typical UTI.  Painful urination, a couple of blood drops and worse pain at the end.  I did not and have never had freqency.  The urine test showed hematuria and bacteria.  I was prescribed antibiotics and got well in about 3-4 days.  No problem, right?  then in November, my wife and I both got COVID, bad enough that we were in bed for 4-5 days and tired/weak for another 10 days.  During that period, I had another episode of painful urination, not nearly as bad as the first go-around, and only lasted 2-3 days.  I never saw any blood.  During my telehealth visit with my primary MD, he did not like the painful urination piece, which I assumed was another UTI,  because I was already on a good antibiotic as part of the COVID treatment regimen (Antibiotic, Steroid and Ivermectin).  He ordered me to get in to see a Urologist right away.  Which I could not do until January due to Covid shutdown.  The Urologist ordered a CT with contrast, full blood workup and a cysto.  The CT with contrast showed nothing, the blood and urine work were all normal.  He did a clumsy job with the scope, but he saw a cancer area and pointed it out to me, as well as another area that he did not think was cancer, "but I'll snip it anyway."  He scheduled a TURBT for the next week.  My wife and I wanted a second opinion, so I went to a urologic oncologist.  Unfortunately, the initial uro did not keep good notes or video, so the new guy did another cysto with a better cysto system and they put Lidocaine in the urethra for 15 mins prior to the procedure... the whole thing was much more comfortable.  He saw the same two areas, and I decided to let him do the TURBT, and he scheduled it as Blue Light Cystoscopy with CysView media.  HIGHLY recommended.  You have to hold the media in your bladder from about two hours before the procedure until they put you under, but the result is amazing.  The interior of the bladder shows blue, and the abnormal cells show bright pink.  Under the Blue Light, he found four suspicious areas, all between 1mm and 1.2mm, and he removed them all.  The whole procedure was relatively painless, if a bit embarrassing.   Recovery was a breeze and the doctor told my wife he would call Tuesday morning with the pathology results.  Then he dropped the ball... not a peep from him until Friday afternoon despite several calls from my wife and the knowledge that the path report was delivered to him on Monday afternoon.  So... lots of pins and needles and a "D" for communication.  

He face-timed me on Friday afternoon.  three 1mm high-grade CIS, no muscle, 4th area was just inflammation.  So now He wants to wait another week and do the 6 BCG treatments in 6 weeks and put me in a randomized clinical trial with IL-15 in conjunction.  He's pretty sure I'll get the IL-15 (nudge nudge wink wink?).  I'm obviously dreading the BCG after reading various forums... but also obviously going to do it.  My wife and I were both put off by my current docs communication and his unapologetic stance when he did call.  I have connections with several academic-based uro-oncologists in the area and I am thinking I'll let one of them take a look at the case and especially the path report and see what they think.

I generally tolerate medications, anesthesia, procedures and the like pretty well, but I am a bit nervous about the stories I'm hearing about BCG.  Any pointers from the board on BCG pain mitigation and tolerance would be appreciated.  

I attached a blue light image (not mine)

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3 months 4 days ago #60504 by dtat60
Replied by dtat60 on topic Recently Diagnosed
Skyking (loved that show when I was a kid), it sounds like you are in good hands. I had a similar diagnosis as you including CIS at age 66. I had two TURBT with the last one being Bluelight with Cysview. That is when they found the CIS. They gave me the photos which looked very similar to yours. After the initial 6 BCGs another 18 BCGs for a total of 24 over a 4 year period. So far all is well.

The main reason I am responding is to let you know that in my case getting the BCG treatment was not that bad (everyone is different). I learned that if I coughed when they reached my prostate it would go right through without noticing much. In my case I never felt my prostate prior to this but after all of the caths (or maybe the BCG) it has never been the same. I have noticed that since I stopped the BCG I am almost back to normal now.

As of my last visit I am done with the BCG and will just go back every 6 months for another Cysto, progressing to once a year. BTW - During this same period I also was diagnosed with NHL and I can tell you that the Immunotherapy is much better than the Chemo/Rad treatments. We are lucky to have it. 


08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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3 months 3 days ago - 3 months 3 days ago #60517 by Alan
Replied by Alan on topic Recently Diagnosed
Skyking 76,

Welcome. I am not making excuses for the Doc's slow response except to say COVID has changed a lot of protocols and timing. At the same time, you are paying for expertise to where if you face other delays another quick phone call to the nurse station is sometimes a good move.

On to what you may be thinking about on tardiness and tumor growth. They don't grow that fast

You have had the "gold standard" of tests on BC with the CT Scan and cystoscopy so your Doc is doing well on this. With BCG you should be on your way to beating this. It is very doable....yes, not a piece of cake but, most can tolerate a course of 6 plus some maintenance. I had to remind myself that this is way better than systemic chemo. Drink plenty of water after the installation to flush your system. There are various meds if pain is too intense (which I was lucky, I took none). You will get through this.

Post with other questions as you go.

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.

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