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1 month 1 week ago #60004 by joea73
I have received from the research team in Korea who conducted the genome study of young patients with low-grade bladder cancers. Below is their reply. Unfortunately, they did not the detailed information on the young patient who showed 5 cm LG bladder cancer.

"We have treatment information of 6 patients (age, 5-20 years; tumor size, 0.7-3㎝) managed at an institution.

Among the six patients, five patients were managed by a pediatric urologist and none of them have been received intravesical treatment including BCG and chemotherapy.

The remaining one patient was managed by a urologist who usually sees adult patients and the patient had received intravesical chemotherapy (epirubicin).

Unfortunately, we do not have the treatment information of the patient with a 5㎝ tumor."

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1 month 3 weeks ago #59966 by joea73
Hi, I am sorry for my typo. I meant to say sympathize.

One thing I can recommend is to ask your cancer center about genomic analysis. The genomic analysis will find which bladder cancer-related gene mutations are found in your cancer cells. The genomic analysis of your bladder cancer cells can tell what type of cancer it is from a molecular point of view. It should complement the diagnosis which had been completed so far.

There was a study done in Korea for 29 young (5-20 yrs old) who were diagnosed with bladder cancer. 28 had LG and 1 had HG. All young patients were alive during a median follow up period of 62 months (range 2-153 months). No young patients progressed to muscle vs 6.7% of adult NMIBCs progressed to muscle. Three young patients had a recurrence. It is noted that the size of tumors of those young patients ranged (0.5cm - 5cm).
So, the prognosis of young patients with LG looks very good even it is greater than 3 cm.

The main goal of the study was to compare gene mutations in cancer cells of young patients and adult patients.
What they found was that there were mutations in genes that affect growth and divisions of cells but not many
mutations in the genes which suppress the formation of cancer cells. An analogy is that young bladder cancer patients had broken components in their accelerator system of the car but they found that the components of their breaking system were not broken. It is noted that in muscle invasive bladder cancer, the faulty braking system is often found. So, if the genome analysis of your bladder cancer cell shows similar gene mutation patterns as those young patients, your prognosis looks good even without BCG treatment.

Some examples of the genes which affect cell growth/division are FGFR(1,2,3,4), RAS (KRAS,HRAS, NRAS). An example of the genes which affect the suppression of cancer cells is TP53.

In the study, they found 47.6% of young patients had HRAS mutation but only 3.4% in adults NMIBC and 3.4% in adults with MIBC. They also found FGFR3 mutation was the most commonly mutated genes (79%) in adults NMIBC patients, but rarely found in young patients. But FGFR3 fusion was found over 30% in young patients but almost none in adult patients. So, if your bladder cancer has a similar profile of gene mutations as of those young patients you should expect a similar prognosis with the young patients, which is good.


The conclusion of the study is as follows

YBC (young bladder cancer patients) had distinct driver genetic alterations such as HRAS mutation and FGFR3 gene fusion and showed good prognosis. YBCs and ABCs (Adults Bladder cancer patients) with YBC-like mutations showed no progression to muscle-invasive tumors. Therefore, bladder cancer with YBC-like genetic alterations represented an indolent bladder tumor, regardless of age, and may be managed with less aggressive treatment.

FYI,
Because the paper did not say if young patients with TaLG had any treatment or not,
I have sent an email to an author of the paper to find out if any young patients with TaLG, especially the patient who had 5 cm tumor had any treatment such as BCG treatment. I will let post it if and when I receive the response.

Below is the link to the study.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7073191/#app1-cancers-12-00307

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1 month 3 weeks ago #59965 by joea73
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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2 months 1 week ago #59871 by sara.anne
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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2 months 1 week ago - 2 months 1 week ago #59870 by Kpatrick64
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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2 months 1 week ago - 2 months 1 week ago #59869 by Alan
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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