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Did anyone wait 3 months after CIS was taken out by TURBT to receive BCG?
Hi,
I was diagnosed with CIS back in December of 2021, had the TURBT surgery last week that confirmed high grade CIS. Urologist wants to do CT scan but does not have BCG due to BCG shortage and don’t think will have BCG until early April. I am located in Atlanta GA, should I wait that long or look for BCG else where? Did anyone wait 3 or 4 months after TURBT to receive BCG. Any advise will be greatly appreciated. Thanks !
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14 Replies
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No I have not been treated with BCG, yet. I was diagnosed withTaG2 4 years ago. G1,G2,G3 is old grading system before WHO changed it in 2004 to LG and HG. G2 s in between LG and HG. HG usually goes through BCG treatment. So, I still do not know why my urologist chose TURBT and scheduled cystoscopies as my treatment regimen. I have been involved with a local patients support group and came to know patients at different stages, including those who have gone through BCG treatment. There I have learned that local hospitals can handle well in normal situations, but when it comes to exceptions such as when a patient does not respond well to BCG, or a patient wants a certain urinary diversion, larger hospitals tend to have more experience and more options; an example is the Emory University seems to have been using Bluelight cystoscopy for several years and have been involved bladder cancer related researches.
best
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Yes, I am hoping if it does return Dr. Narayan will provide the best possible treatment. I will let you know how that goes. Thanks for the support. It helps a lot to find people that have gone through the same situations. Did you have BC?
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First of all, congratulation for your getting an appointment with Dr. Narayan at Emory Hospital. Probably it is the best decision you have made in dealing with your bladder cancer. I looked at his bio and it looked impressive, including having done his residency in MD Andersons, especially his clinical and research interest is in bladder cancer. I have noticed that he has been involved in the Phase III clinical trial of Nadofaragene firadenovec which is a new treatment for those patients who does not respond to BCG treatment. So, I think he is the perfect urologist for you. Well done. Also, Emory Hospital seems to have blue light cystoscopy. So, they may recommend it if they think necessary. I would not worry much about recurrence as the probability is low to see the recurrence just in 2 months after TRUBT. If it does, and if it CIS, Dr. Narayan would give you the best possible treatment , which is likely BCG, for your situation. Please keep us update. Best
Bluelight cystoscopy in Emory University Hospital
https://www.youtube.com/watch?v=_LkbnWPdWHo -
Thanks for the detailed explanation Joe. I am learning a lot by joining this forum. I have made an appointment with an urology oncologist Dr. Narayan at Emory Hospital where they do have BCG but could not find an appointment until March 22nd so I guess I will have to wait couple more months regardless. Hopefully it does not come back again by the time, I am scared that it might recur.
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No Muscularis propria present
“No Muscularis propria present” means there were not muscle layer samples given to the pathologist . I think this is okay because it was CIS. There are three layers (tissues) in the bladder, i.e. Epithelial Tissue (Ta), Connective Tissue (lamina propria) (T1), Muscle Tissue (Muscularis propria) (T2,3). CIS is known to stay in the epithelial tissue and grow horizontally fist, then progress to the connective tissue. If the pathology report says CIS, the pathologist found tumor in the epithelial tissue only, and did not find in the connective tissue. It is highly unlikely that the tumor progresses from the epithelial tissue (Ta) to the muscle tissue (T2,3)skipping the connective tissue (T1).
So, the second TURBT is not required. AUA guideline recommends the 2nd TURBT as follows. “In a patient with T1 disease, a clinician should perform repeat transurethral resection of the primary tumor site to include muscularis propria within six weeks of the initial TURBT. Strong Recommendation; Evidence Strength: Grade B “. Actually, I had asked my urologist why he did not get muscle tissue when my pathology report said “No Muscularis propria present”, then the urologist said because he did not see the tumor had progressed the connective tissue (lamina propria). He has 30 years experience, so I thought he should know what he was doing.Bladder wash with chemotherapy agent after TURBT
AUA guideline for NMIBC 2021 says “In a patient with suspected or known low- or intermediate-risk bladder cancer, a clinician should consider administration of a single postoperative instillation of intravesical chemotherapy (e.g., gemcitabine, mitomycin C) within 24 hours of TURBT. ” I think the rationale is that high risk NMIBC ( HG and CIS) will get intravesical BCG or Intravesical chemotherapy anyway, and it will kill implanted cancer cells anyway, so the wash is not required. On the other hand, urologist may choose TURBT and surveillance by cystoscopy only low risk or intermediate risk (LG). In this case, the wash is known to reduce the future recurrence by 10%. Since the pathology result was CIS, the wash should not be done.
BCG delay due to shortage
I get upset whenever I still hear the delay in BCG treatment because of shortage. I believe patients have right to know the supply chain of BCG and its inventory in every hospital. The information of the supply chain and the inventory level in each hospital is very opaque. I am not sure if it is intention by MERCK or healthy care system. I have read a posting that some health care system in California gives 1/3 dose to alleviate the shortage problem. We know 1/3 dose gives equivalent efficacy. Perhaps, if we give 1/2 dose to everyone till MERCK completes the promised 2nd production line in 5 years. Or FDA should expertise the approval of Tokyo-172 strain, which has been used in the clinical trail for near 4 years. I am pretty sure that if it has any serious efficacy or side effects, the clinical trial would have stopped by now. Anyway, I am very sorry to hear that your BCG is not available there. BCG is very effective, especially for CIS. Dr. Ashish Kamat of MD Anderson presented a webinar in which he said the efficacy of BCG for CIS is 85% complete response rate after 6 weeks induction + 3 weeks maintenance. Usually BCG starts 4-6 weeks after TURBT. 3 months or 15 weeks seem to be long. I also do not know if 3 months is too long. What I know is that the progression rate is >45% if CIS is untreated. I have seen posts some patients chose intervesical chemotherapy, eg. GEMCITABINE as substitute for BCG, also someone was put on Gemcitabine + Docetaxel Sequential chemotherapy till BCG becomes ready and switch back to BCG. This decision requires an expert on non-muscle invasive bladder caner treatment, especially for CIS only patients. I hope you will have an access to BCG soon.
best
https://www.auanet.org/guidelines/guidelines/bladder-cancer-non-muscle-invasive-guideline
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If your urologist has any suspicion that the cancer has spread into the muscle, he/she would do another TURB. If there is no indication of this they may not do it. You may want to discuss this with your urologist.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hmm, is the Urologist supposed to provide muscle sample for biopsi? Should I do another TURBT to make sure there is no muscle invasion? Thanks for your help Sara. You are so knowledgeable regarding bladder cancer. I am learning a lot by reading all the posts.
That means that there was no muscle tissue present in the biopsy sample that the pathologist received.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
One other question. What does “No Muscularis present” in pathology report mean ?
Chances are as your BCG worked several years ago it should work again.
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.
Yes, this was a recurrence from January of 2014. At that time I had high grade papillary TA and the urologist (Retired now) at the time gave a dose of chemo and gave 6 doses of induction BCG, did not follow the maintenance regimen but I was cancer free for almost 6 years and now it recurred as a high grade CIS and this URO doesn’t seem too concerned about this. I will definitely seek a second opinion. Do you know if people usually respond well to CIS if they responded well previously with G3 papillary tumor. Sorry for all the questions, so many things are running in mind and I am stressed about this Dx. Thanks for getting back to me.
Reading about no muscle involvement is good. Often, a second TURB is done to be sure margins are correct. The pathology report should indicate that but, a second is still not a bad idea. It sounds like you have some additional doubts. Many of us would encourage a second opinion for peace of mind, “fresh eyes” and a confirmation of the first DX is often agreed upon. Does it also sound like you have had a recurrence? Perhaps another reason for a second opinion. You have some time as you heal from your first TURB.
Blue light is an improvement from what I have read but, not imperative. The bladder wash is usually done to kill any possible re-seeding from the TURB. My URO used a blue dye to light up any cancer cells which would have been a similar situation to blue light.
My cancer was papillary (mushroom/stalk-like). So, it is a different type. It did grade as high grade hence the BCG regimen that I was treated with.
One last take. Many patients will pass clots and a small amount of “old” blood from the TURB 10-17 days post. My URO warned me about this otherwise I would have freaked out as it happened to me. It depends on how much digging they do.
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.
Thanks Alan. This site has so much info that I had no idea about. The CIS was confirmed after the pathology report came in, below is what the doctor uploaded in the chart. The report said No Muscularis propria present, does that mean its not muscle invasive or does it mean there were no muscle presented to look under microscope and evaluate? how did they figure no invasion without having enough sample? The doctor does not seem like he wants to give BCG at this time or do a second TURBT plus they don’t have any at their clinic at the point. When asked, he did not use blue light cysto nor did he wash the bladder with a dose of chemo. He did not offer any other treatment meanwhile we wait for BCG. I am thinking about seeing an urology oncology doctor at Emory. I am so scared that there might be cancer cells left in the bladder that were not visible with white light. C word is always scary. What treatment did you have? did you have high grade CIS as well? Was it just one occurrence?
Your pathology report has returned and the biopsy did show a cancer recurrence. We did treat the entire abnormal area during the surgery so there is no visible tumor remaining. Overall it was a small.
Surgical Pathology Report [Image Missing] Pathologic DiagnosisURINARY BLADDER, BIOPSY:–High-grade urothelial carcinoma (carcinoma in situ)–No invasion seen–Chronic inflammation–No muscularis propria present
Welcome Chadni,
I was surprised to see more posters talking about another BCG shortage. It has been off and on for a few years. You are smart to be checking on other sources of BCG as Atlanta is such a massive city some offices I would guess have some. I also found it interesting that your URO diagnosed CIS BEFORE your TURB/pathology report. One simply doesn’t know what is going on until that path reported.
Some quick observations. First, you do need to have your bladder heal before getting BCG. Customarily that means waiting 6-8 weeks because of the burning/cutting done. So you have some time to pursue other sources of BCG which would push you out to late February early March. Second, a CT scan is often done of the torso to make sure there is nothing else happening in the urinary tract. I would have that done as that is a usual part of the diagnosis. At the same time, there is some mild concern about the radiation involved in this test. Most that monitor this board have probably had this including me. You just don’t want this done very often.
As CIS is always considered high grade, 3 months probably won’t make a difference but, who knows? You don’t want to linger any longer than you can. If you still can’t find BCG there are alternative agents. Different chemos are instilled just like BCG. Some cocktails involve heating these as part of the treatment and that is new. There are several discussions about this 6-18 months ago on some threads that you may want to visit on this website that will do better than me trying to paraphrase what was discussed. Edit added: Here is one that is good: https://bladdercancersupport.org/forum/8-non-invasive-superficial-bladder-cancer-questions-and-comments/47198-switch-from-bcg-to-gemcitabine-and-docetaxel.html
Keep posting as you go. We all learn from each other.
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.Sign In to reply.
