Carcinoma In Situ diagnosis

Update on my journey. I previously posted that I could no longer get BCG from my large treating facility and that is still the case. Fortunately a local urologist was able to give me three more maintenance BCG to keep up with the SWOG program. I now have had 21 BCG treatments.  Still no major side effects other then burning and frequency for a day. Last week I had a cystoscopy, CT Urogram  and   cytology test which were all negative. So as of now I'm appx 18 months clear of any carcinoma. I still have the testing done at the major facility. I'll be due for another maintenance round of BCG in December. I'll try to get my local urologist to give those treatments.
The only thing that cautioned me was on my cytology report under Final diagnosis after it stated "Negative for high grade urothelial carcinoma" it said Urothelial and squamous cells present. I've never seen that before on these reports. Anyone else get those comments?

I'll check with uro next week.

Again....thank you to everyone on this site that has helped over the last few years to deal with this.

Clyde

I have read BCG have become unavailable so some patients and patients called around large hospitals and secured BCGs.   

Another option is to administer Gemcitabine + Docetaxel while BCG is not available.
I had seen a posting here in this forum , of someone who has been treated by Dr. Joshua Meeks of Northwestern Medicine in Chicago. BCG became unavailable during maintenance course.  Dr. Meeks put the patient to Gemcitabine + Docetaxel  regiments, then put the patient back to BCG when BCG became available.  

best

Clyde,

Your case is different from mine, except for CIS. What gives us comfort is likely different. Ultimately, we have to choose from the options that are available to us. That said; I offer the following thoughts.

No one knows how much treatment is the necessary amount for any individual. Dr. Lamm and the SWOG (SouthWest Oncology Group) produced massive research driven data based on "the Lamm BCG schedule" and a huge study population. Those results, which included the BCG induction and long-term maintenance schedule remain the foundation work for evaluating other options. HOWEVER, the data applies to the large group, and shows good GROUP results with the extended treatment schedule. AGAIN, the question remains, how little BCG treatment is necessary for any given individual ?

Perhaps the "smart" choice is to go with the group treatment plan. BUT, even on this board, you will find individuals treated with shorter or divergent treatments with good results. Researcher Dr. Michael O'Donnell is a BCG supporter, but has looked at some of the assumptions underlying Lamm's schedule. O;Donnell and Lamm and SWOG are worthwhile search terms for a deep dive into BCG info.

It may be helpful to talk to your doctor about WHY he seems not overly concerned at this point.

Perhaps s/he thinks you are showing a complete response ? Perhaps he is concerned about the side effects of BCG treatment on the bladder ? Perhaps he feels that regular evaluation of the bladder is best until (IF) CIS returns ?

Knowing what the doc would want to do if the CIS returns could be (has been for me) helpful and reassuring. Similar to looking at treatment schedules other than the Lamm/SWOG, which was the treatment I also started on years ago and eventually left.

Let your Doc or care team know you are uncomfortable with the unknown future of treatment. Hopefully, a plan can be made that addresses your concerns. There are always treatment options, and it is our right as patients to be fully involved.

Best
Jack

The good news is that I had a negative cystoscopy today. This gives me a full year of negative cystoscopies. I'll get my cytology results in a week or so but my last three have also been negative.

The bad news is my NEC facility doesn't have BCG available for me to continue with the maintenance protocol. This concerns me since BCG has been so effective for me. The Dr. said I was in a good position and he and shouldn't be overly concerned about it at this point.
He scheduled me for a CT urogram and another surveillance cystoscopy in September.

I'm not sure if I should be trying to find another institution with BCG to continue the maintenance protocol or hold tight until September. Has anyone else had to deal with this? Not even sure where to call to see about BCG availability of if they would just provide me with three maintenance treatments. Any advise? Anyone know where BCG is available?

Thanks,

Clyde

Big Thank you Joe.   I will bring up the interferon.       Les

HI Duhhawaiian,

Before you decide,  you may want to discuss with urology  a few scenarios what if your disease does not responds to the next treatment, 

"If we do Gemcitabine, what will be treatment schedule like?"
"If we do Gemcitabine, how will we know that Gemcitabine is not working?"
"If we do Gemcitabine and it is determined that it is not working, what will be the next treatment options, RC or another bladder preservation treatment?"

If we do BCG, what will be the regimen like,  another try for 6 weeks induction + maintenance courses"?
If we do BCG. when we determine that another BCG is not working?
If we do BCG, what will be the next treatment, Gemcitabine?

I know someone who did not respond to T1HG+CIS after the first 6 weeks induction course, the urologist recommended BCG +i interferon with the standard regiment - 6 weeks + 3 years of maintenance.   I mentioned this because even 3 weeks maintenance could have improved the response, the fact, your disease did not respond after the 6 weeks induction course  may mean the chance of your disease responding to BCG alone may be so high. Accordingly, you may want to discuss if BCG+Interferon would give better chance for the disease to respond. BCG + interferon has been offered  to those initial BCG did not work.
 
In this case, you may want to ask If we do BCG, what will be the next treatment, Gemcitabine.

best