9 years 11 months ago - 9 years 11 months ago#25722by mznoregrets
When I first found this forum 2.5 years ago I had just been dx'd by a local uro who wanted to start BCG treatments. THANK GOD and this forum that I was encouraged heavily to be sure of the dx. To make a long story short - the 1st TURB said I was "atleast a T2". I called the pathologist and learned there was no deep muscle in the specimen. I had my bladder removed 6 weeks later and the final path put me a PT3b - it was thru the wall which is very bad.
My point - be damn certain you are your own best advocate - your life can depend on it. I surely would have lost my battle had I not questioned the pathologist. Personally I must thank Pat- she armed me with knowledge and confidence to get the best care, and the courage to demand it. Thus I am still here
I wish you well on your journey. Thru all the bumps bladder cancer brings know this forum is genuine and wise and willing to reach out. Thanks Cynthia and Ed too
PS Read my old posts from Jan - March 2007 to see how it happened for me. It happens more often than we think - understaging that is.
Last edit: 9 years 11 months ago by mznoregrets. Reason: spelling
I think that if your tumor is high grade it would be Grade 3, and invasion into the lamina propria would be Stage 1, so it would be T1G3. With this stage and grade BCG is usually prescribed. Now I'll nag like everyone else. You absolutely need a bladder wall muscle sample for a pathologist because the muscle layer is adjacent to the lamina propria and you need for this to be done before starting a BCG procedure. A picture of the bladder would probably help make more sense of this so I'll look for one.
9 years 11 months ago - 9 years 11 months ago#25703by Alan
My diagnosis is somewhat similar. I also still accept everyone is still different. How's that for wishy washy statement!
Anyway, mine was a papillary tumor also. It was small.5CM. My URO also did a second TURB to be sure on the margins. He is going by the basic playbook. He was stunned when the path report came back grade 3. Eyeball he was almost certain it was G1. Thus, the re-TURB. It did read stage 1-lamina propria-no muscle.
I have done BCG, one group of 6 then a cysto 6 weeks later, with a follow up group of 6. Have had 3 cystos since all clear and clear cytology. There are several protocols with differing reasons for what a URO will do. My URO was actually at UTSA when Dr. Lamm pioneered the BCG. A very few say do one protocol of 6 and your done. A few (from what I have read from our Canadian friends some are on a monthly for a year). A bigger minority have done the 6 and 6 as mine. A bigger group like the 6 plus maintenence as per Dr. Lamm.
Lots of reason for the differing protocols. My URO talks about everytime he does a cysto there are some small risks. My last cysto activated latent bacteria or injected bacteria as I had to take antibiotics for an infection. BCG involves small risk-probably increasing with every instillation. Thus his group doing 6 and 6. I am currently clear a year.
I am linking a Journal of Urology article-you can activate in as a guest. After 2 years the general consensus was maintenence vs. 6 and 6 was about equal. Who really knows? Our bodies are all different and I can find opposite abstracts from on almost every subject on cancer. See:
Editorial Comment: The original regimen for treating urothelial cancer with intravesical BCG instillation was based simply on packaging, since 6 ampules of BCG were provided and the number of weekly instillations was therefore set at 6. Studies documenting the development of an immune response with intravesical BCG suggested that a maintenance regimen might be of value in maintaining prophylaxis, since recurrence and progression occurred notwithstanding promising responses to an initial 6-week instillation. The production of cytokines and lymphokines as well as the induction of T helper cells were enhanced by a 3-weekly “booster” instillation 6 weeks after the last of the 6-week primary course. However, others demonstrated that a monthly instillation maintenance regimen was also effective in preventing recurrence.
The present study documented maximization of a peripheral immune response at 4 weekly instillations to maximize an immune response in those not previously immunized. However, the lymphoproliferative response was assessed in a relatively small number of patients, and it is known that lymphokine and cytokine production may have different patterns of response in terms of time course and dosage. Therefore, more patients will need to be studied and their tumor response to intravesical BCG assessed in relation to their lymphoproliferative response to determine appropriate regimens for BCG treatment. Much remains to be done to determine appropriate regimens and mechanisms such that treatments may be given based on specific reactivities of particular tumors in individual patients.
See for the complete: http://www.jurology.com/article/PIIS0022534705667936/fulltext
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.
Bladder tumor, TURB: Papillary transitional cell carcinoma, high grade. Lamina propria invasion present. No muscularis propria identified in the histologic preparation.
I would also suggest speaking with your uro about a reTURB. If there was "No muscularis propia identified" then you want to be sure that you do not have muscle invasive and the only way to do that is to have a sample that includes sufficient tissue sample into the muscle.
If you do have muscle invasive, then the course of treatment is very different and BCG is probably not the way to go.
Of course, we will all be keeping our fingers crossed that a reTURB with sufficient margins into the muscularis propia comes up negative.
Many times when someone is new in bladder cancer they do not understand where long term survivors are coming from on the subject of where one goes for treatment or on the subject of a second opinions. And when that happens I try to explain that they are not faulting where you are receiving treatment is it just that you could be dealing with a major cancer center but it is not considered to be a center of excellence in bladder cancer. Part of what we do here is to always suggest strongly that a second opinion be sought at a center that handles a very high volume of bladder cancer and an Urologist and possibly if applicable an Oncologist that specializes in bladder cancer. Many Oncologist, Urologists and Pathologists handle many genitourinary forms of Cancers and they may handle blc but their practice may heavily consist of prostate cancer. Whereas the treatment you receive where you are currently going is probably right on target it is wise to seek out a reality check with someone that only deals with a high volume of bladder cancer. It is also suggested that you have your pathology slides reviewed at a center that does a very high volume of bladder cancer. Pathology is as much of an art as it is a science and a center such as USC/Norris, M.D. Anderson or Hopkins will see more bladder cancer biopsies in a month than even a major cancer center that is not center of excellence in blc. They will take a look to see if proper margins were gotten in your original biopsies and that they agree with the grade and stage. We know from statistics that as many as 40% of bladder cancers are misgraded sometimes with very tragic results. Remember when dealing with this forum that people are just trying to help and they have seen horror stories of people that did not receive optimum care or were under graded from the start. They are not saying you are not receiving proper care they just want to make sure you have the information to make an informed decision about your care.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society