Hi all, I'm a new member. My biopsy from my turbt came back with a Carcinoma in Situ diagnosis. My doctor said it was superficial and we caught it early. As far as he could see I had one red spot. He is going to start the BCG treatment next week for 6 weeks then let the bladder calm down and do another cystoscopy to see if it was effective.
I'm trying to learn as much as I can about CIS and BCG. Oddly enough when I check out CIS many sites list it as "abnormal Cells" instead of a cancer. But it looks like it is high risk if it does decide to invade the muscle. So I went from thinking this might not be too bad to thinking this is high risk! I wasn't sure if I should get a second opinion or just go with the planned treatment. It appears this is the standard treatment for CIS. I have also read different views on BCG treatment. Some appear to tolerate it very well with no problems and others have problems with it. I'm also concerned that BCG does not cure CIS all the time. Hopefully there is a back up plan if BCG doesn't work. I would be interested to hear any comments or experiences other folks have had with CIS or BCG. Thanks!
Welcome from another cis patient! Unfortunately, there is a difference in what is called “CIS “in bladder cancer and in other types of cancer. For example, with breast cancer there is even some argument as to whether it should be called “cancer” at all. In the case of bladder cancer it is serious cancer, although often very treatable. It forms sort of like a rash over the surface of the bladder so that is is not removable such as a solid tumor would be. AND IT IS ALWAYS CONSIDERED HIGH GRADE, meaning that it has rapidly dividing cells and is likely to spread.
The good news is that there is an often very effective treatment available, BCG. This is the current standard of treatment for CIS and this is what your urologist should recommend. It has been shown that in the case of high grade bladder cancer an initial series of six BCG instillations followed by a series of maintenance treatments over a period of about two years provides a high level of remission.
BCG is not a lot of fun, but it is very doable and much easier than the traditional chemotherapy that other types of cancer often require. There is a lot of information on this Forum about patients’ experience with BCG. Just use the SEARCH box at the top right of this page. One word of caution...people who experience problems or side effects are more likely to post their experiences than the majority who sail through!
I was diagnosed with CIS over 12 years ago, had the initial and maintenance series of BCG,and have been cancer-free ever since. You can do this too!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Do you have the pathology report from the initial TURBT? It's good to make a file for all the medical records.
From what you described what you saw "a small red spot" what the urologist described "superficial and caught early", I think your prognosis looks good.
I too have a habit going down a rabbit hole to find relevant information over the internet. There are so many sites and there are many research papers on bladder cancers, sometimes with conflicting results. I will be careful not just taking in some number or a statement straight as it may confuse you more. I usually first refer to the American Urology Association guidelines to urologists for the treatment of NMBIC (non-muscle-invasive bladder cancers). Treatment is based upon the Risk Stratification as shown in table 4. Most NMIBCs are papillary type, which grows up into the lumen (empty area) of the bladder. The stages of NMBIC for papillary type has T0, Ta and T1, depending on how deep it has progressed. The grade for papillary type NMIBC is LG(low grade) and HG (high grade). The grade indicates how much cancer cells look different from normal cells. CIS has its unique stage and grade, which is Tis.
Table 4 categorizes NMBICs into low risk, intermediate-risk, and high risk. All CIS is high risk, accordingly the recommended treatment is BCG. T1HG is high risk, accordingly the recommended treatment is also BCG. TaHG, if it is not recurrence, is intermediate risk, so the recommended treatment is intravesical chemotherapy or BCG but shorter period than high risk.
Attached are the histology of normal bladder and CIS. In the normal bladder, all cells look uniformed. Umbrella cells (top layer) stretched out to protect urine to come inside. There is a think layer called the basement membrane just below the basal cell (bottom layer). This is like a glue between epithelial cells and lamina propria (connective tissue).
Another picture is CIS. Notice that cells are very abnormal-looking compared to normal bladder cells. But, if you look below the basal cells (bottom layer), they have not crossed the basement membrane into lamina propria (the connective tissue). This is the typical feature of CIS. But, CIS is known to progress to the Lamina propria layer and into the muscle layer. I assume that when your urologist said that your CIS was early stage and superficial, the urologist meant that your CIS had not crossed the basement brane.
So, the question is why when the behavior of CIS tends not to go up like a papillar type and not go under beyond the basement membrane to lamina propria (T1 area), but indeed if not treated it tends to progress to lamina propria and muscle layer. A clue is found by its genomic analysis. P53, which is known as a tumor suppressor gene is often found in muscle-invasive cancers. P53 is rarely mutated Low-Grade NMIBCs but P53 mutation is often found in CIS. It is also noted P53 mutation is also found in high-grade papillary type bladder cancers.
See gene mutations of MIBC.
In terms of the treatment for CIS, there have been several studies. The largest random study was done in 2005
by the European Organization for the Research and Treatment of Cancer. pubmed.ncbi.nlm.nih.gov/15947584/
203 of 293 (68.1%) patients who received Intravesical BCG had a complete response.
158 of 203 (51.5%) patients who received Intravesical chemotherapy had a complete response.
Because every cancer is different even among CIS and every patient is different, Some patients do not respond well to BCG treatment. In such a case, there is an option of early cystectomy or several options for bladder preservation treatment.
Sorry, I forgot to attach Genomic analysis of muscle-invasive bladder cancer. Among muscle-invasive bladder cancer patients, over 40 patients had mutations (some deleted) of P53 - tumor suppressor gene. CIS cancer cells also often show mutations of P53. Papillary low-grade cancer cells rarely have mutations of P53. It is noted that P53 is not only the cause of progression. Analyzing pathways and cell environment which contribute to progression is so complex and I do not understand it though mcuh researches have been done.
Joe, Thanks for taking the time to provide me with such a thorough response. I did go to a major cancer center to get a second opinion. This doctor wants to do another cystoscopy to see the bladder himself and if red spot is as described by the first dr. He will send me for bcg treatments for 6 weeks.....starting right after the cysto. If he see's a larger spot or tumor then he will do another turbt prior to bsg treatment. I think he is very thorough and doesn't want to strictly rely on another uro's notes. I also wonder how long it takes for CIS to grow? Does it always grow into the muscle? Can it stay as is for a long period? I was lucky they found mine. I went to a uro for BPH treatment and he finally did a cystoscopy and seen the spot and then we biopsied it. If not for bph I would have never known I had an issue. There are probably allot of folks with these problems that don't know until they have serious problems. I asked the dr if I could have had this for years but he said there is no way to tell. I also read the BCG effectiveness is boosted by maintenance treatments. Of course it is a concern if the bcg doesn't work. Then you have some tough decisions on how much more time you have to try other therapies before the CIS grows into the muscle or worse.