Looking For Opinions

8 months 5 hours ago #59867 by Kpatrick64
Looking For Opinions was created by Kpatrick64
Hi Everyone,

I am a 25 year old Male and am newly diagnosed with Stage TA non aggressive bladder cancer. Back in January ‘19 I woke up one morning randomly urinating blood which was something I have never experienced before. Went to my normal physician and he assumed for my age it was kidney stones. I went and did a CT scan without contrast and nothing showed. He prescribed me some uti antibiotics and told me to come back if it happened again. A couple months later I experienced it again. I went to a local urologist and brought my ct results. He assumed the same thing being that I am 25 that it probably wasn’t anything serious. He got me on his schedule for a cystoscopy at a local surgery center. It was about a 6 week wait because of Covid. During that time the blood happened again, this time with large clots and lasted about a day and a half. I went to the ER and they did another CT scan but this time with contrast. They found a mass on the right side of my bladder. When this all happened I notified my urologist and he was able to move me up in his schedule for the cystoscopy. I went in and they found the large mass, used a turpt to remove it and he immediately let me know that he assumed it was cancer. I went into his office the next day and did one treatment of metomyicine. Once I got the pathology back he recommended 6 weeks of BCG treatment. Ion this time I also brought my results to a cancer hospital to see a urologic oncologist for a second opinion. His opinion was to not jump into the bcg treatments right away. And get a re-turpt. Being that I have such a low grade and stage and it was only one tumor he recommended that and than to monitor it every 3 months. I brought this info back to my local urologist and he argued that the cancer doctor didn’t actually see into my bladder and only reviewed the results. He said he would argued with waiting on the BCG but my tumor was very large compared to most and that worried him. He said it wasn’t worth waiting the time it would take to get the returpt and than the healing process. He said I should treat my cancer right away.

Has anyone been in this position before and have any opinion whether I should start my treatments (I would be starting this upcoming week) or should I wait and get the returpt and be monitored from there?

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8 months 2 hours ago #59868 by sara.anne
Replied by sara.anne on topic Looking For Opinions
Wow...you have sure been on a roller coaster for the past few weeks and it seems as if you are still on it!! The "usual" protocol for low grade, non-invasive bladder cancer is exactly what your oncologist recommended. That is exams every three months. This type of cancer has a nasty little habit of coming back, which is why the frequent cystoscopy exams. Also, if there is any uncertainty at all a second TURB is often done to be sure that all the tumor was removed and that there are no other little surprises lurking. BCG is more effective with high-grade bladder cancer and is usually only used in low-grade, non-invasive cases when the cancer has returned more than once. The thinking is to save the "big gun BCG" until you "really need it."

That being said, you are not a "typical" bladder cancer patient. You are very young and your tumor was evidently quite large. A second TURB would not be unusual in your case. Is there a major teaching hospital near you? A second opinion from a urologist in such a place might settle the differences of opinion for you.

Please keep us informed of your progress and your decision, since it may help someone else in your position.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 months 1 hour ago - 7 months 4 weeks ago #59869 by Alan
Replied by Alan on topic Looking For Opinions
I have to echo Sara Anne's answer. Another second opinion is on order with such differing protocols. The good news is there appears to be agreement as low grade cancer. The rest.... is all conflicting. A second TURB usually will settle things. A top notch teaching hospital or major group that treats and sees a LOT of bladder cancer is in order. MD Anderson in Houston, Cleveland Clinic, Northwestern in Chicago, Moffitt in Tampa as ideas. What general area do you live? Perhaps someone will have a suggestion. Too many practices see mostly prostate issues.

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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7 months 4 weeks ago - 7 months 4 weeks ago #59870 by Kpatrick64
Replied by Kpatrick64 on topic Looking For Opinions
Thank you for the responses! I am living in central New Jersey. The cancer hospital I visited was Robert wood cancer institute at Rutgers university. I would be doing the returb and monitoring with the urologic oncologist I originally talked to there who I was recommended too.

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7 months 4 weeks ago #59871 by sara.anne
Replied by sara.anne on topic Looking For Opinions
That would be an excellent place. Good choice!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 months 2 weeks ago #59965 by joea73
Replied by joea73 on topic Looking For Opinions
I emphasize with young people being diagnosed with bladder cancer which is known to be seniors' disease.
I had gone through a similar experience. It took my emergency visit and the result of CT scan, which showed a mass, to bump up my visit to a urologist.


Though I agree with the choice you made to go to a cancer center.
What your original urologist recommended BCG was not totally incorrect.

Do you remember how big the tumor was?

If your original tumor was bigger than 3 cm, your tumor is categorized as intermediate
risk. TaLG, single tumor, and less than 3 cm is considered low risk, and AUA guidelines recommend
a watch and see protocol. But, the treatment for intermediate-risk tumors is either intravesical chemotherapy by mitomycin or intravesical BCG. It is noted that what the doctor cares about is that your tumor will not progress to the connective tissue and to the muscle layer, as it increases a chance of metastasis and impacting the survival rate.

It is known that Low-Grade tumor rarely progresses to the connective tissue (T1) and the muscle layer.
That is why watch and see protocol is acceptable. But according to a large study done in Europe, LG tumor if it is greater than 3 cm, statistically shown that it sometimes progresses though it is not as often as high grade.

Also, a pathology report usually only tells what type, the grade, and the stage of the tumor but not what it looked like or how big it was because only fragments of cancer were given to the pathologist. A clinical doctor uses his or her experience from treating patients and the pathology report and decide the next course.

Best wishes

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