Newly diagnosed with this doozy. My third bout of cancer. I had a Gleason 8 prostate cancer in 2012 and has prostatectomy. Found it early and only required surgery. No chemo or rad. Life has been good ever since.
2021 diagnosed with spindle cell sarcoma on my arm. Found it early and surgery was successful. No chemo or rad.
In early April 2023 diagnosed with Signet-ring cell. They think its Stage 1 and hasn’t gone into muscle yet (not 100% confirmed). Going for a second TURBT May 3.
My early research doesn’t seem too promising. Sounds like this rare aggressive cancers takes no prisoners. Anyone have experience with this type of bladder cancer?
I was diagnosed common urothelial carcinoma NMIBC, so I do not know anyone close to me who were diagnosed with variant histology such as adenocarcinoma. If you enter adenocarcinoma in search box, you will find past postings by patients who were diagnosed with adenosarcoma. I have noticed that most patients who posted adenocarcinoma were already into muscle invasive at the time of diagnosis. I have noticed variant histology is considered aggressive because patients are often diagnosed as muscle invasive at the time of diagnosis. If it is muscle invasive, the treatment is usually RC. But the question is if neoadjuvant chemotherapy (NAC) is effective for a certain type of variant. Now a days, at some large academic hospitals, it seems they start using genomic analysis and determine if (NAC) will be effective or not by analyzing gene mutations of cancer tissue of variant histology. They divide into Luminal and Basal subtypes. Chemotherapy is not effective for luminal but effective for basal subtype. The rationale for subtyping is to determine if NAC should be done before RC.
It will be a bit complicated if variant is diagnosed as NMIBC. The decision must be made whether cystectomy should be done right away or bladder preservation treatment such as BCG should be tried first. The reason your hospital is gong to have the 2nd TURBT indicates that if the tumor has not progressed to muscle, they will recommend BCG. MD Andersons’ study (2015) for micropapillary variant showed early cystectomy had better 5 years disease free survival rate than those who had BCG. Memorial Sloan Kettering study (2014) showed similar (83% with cystectomy vs 75% with BCG), so they concluded BCG is acceptable approach. The study in Sweden (2000) treated 3 patients with adenocarcinoma with BCG.
Patient 1 63 yrs old man – moderately differentiated adenocarcinoma with T`HG
BCG 6 weeks + 3 monthly BCG BCG was terminated due to side effects.
No tumor recurrence for 82 months.
Patients 2 78 yrs old woman – – moderately differentiated adenocarcinoma T1LG
For 4 years 7 fulguration for may small tumors. Another 4 months later TURBT of a 5mmm tumor – moderately differenciated
adenocarcinoma.
BCG 6 weeks + 18 monthly BCG. Cystoscopy and cytology have been normal the subsequent 58 months.
Patient 3 61 years old man – 4 TURBTs – moderately differentiated mucin-producing adenocarcinoma T1HG.
BCG 6 weeks 5 monthly BCGs stopped due to side effects
No tumors identified 53s month after the first BCG instillation
Patient 4. BCG was not successful.
Note that the patients’ pathology said – moderately differentiated adenocarcinoma.
The study concluded BCG appears to be effective not only in the treatment of transitional cell carcinoma, but also in adenocarcinoma of the bladder.
I always refer to the video (link is below) by MD Peter Black – prof of urology department o UBC who filled i for MD Ashish Kamat -prof of urology in MD Andersons. MD Andersons have published several research papers in regards to variant histology.
Stage 1 is better than other DX. At the same time, as it also sounds, your research shows that your type is very aggressive and doesn’t respond well to many of the regular protocols. Which is what to volunteers on this board have seen. A second TURB is a good move to verify things plus it is like a set of fresh eyes. I strongly encourage you to seek a LEADING bladder cancer hospital or teaching hospital. MD Anderson, Cleveland Clinic, Sloan Kettering, Northwester in Chicago, USC.
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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