Newbie Here - When to Start Chemo

11 years 2 months ago #29255 by tlw
Replied by tlw on topic Newbie Here - When to Start Chemo
So, it would appear that her course of treatment to date has been normal and appropriate? Would you suggest that the BCG be performed by her urologist or have her travel to a BCC in Houston or Dallas from Amarillo? If there are bound to be side effects, wouldn't she be better off at home with her regular doc?

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11 years 2 months ago #29254 by mmc
Replied by mmc on topic Newbie Here - When to Start Chemo
Great summary of the history!

The other good news in the reports is that is low grade.
BCG or Mitomycin would be reasonable treatments, depending on how well she can tolerate the BCG.

My suggestion is that you get the uro to start with low dose (1/3 strength or less) but check out Dr. Lamm's site for more information to make your own judgement on that. My interpretation of the research is that low dose reduces the risk of severe reactions to BCG (if started at low dose) and is no less effective.

It might have been good if he had treated with mitomycin when she had the TURB, expecially since the tumor "disolved in the process", which sounds like possible seeding potential.

While BCG is not "chemo", technically mitomycon is. However, since mitomycin is instilled in the bladder, it's hugely different from "in the vein chemo" with basically none of the side effects.

BCG is most effective with CIS (Carcinoma In Situ) but is also good with other types of bladder cancer.

You may want to consider a second opinion at this point by getting the slides from the lab and sending them along with all of the doctor notes and pathology reports to a major cancer center.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 2 months ago - 11 years 2 months ago #29253 by tlw
Replied by tlw on topic Newbie Here - When to Start Chemo
Deleted duplicate post.

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11 years 2 months ago #29252 by tlw
Replied by tlw on topic Newbie Here - When to Start Chemo
Here is my update after having read through mother's medical file:

Sometime during the spring cardiologist noticed microscopic hematuria and referred mother to urologist.

On 4/29/09 mother visited urologist, who noted "papillary tumor present on left lateral wall. No significant trabeculation noted." Urologist notes: "malig neo posterior wall bladder"(Can he diagnose tumor as malignant without pathology?) Urologist scheduled "Cysto/Bladder Bx/Fulguration (hosp)."


On 5/28/09 urologist performed "cystoscopy and TUR of bladder tumor." Post op report states: 2-3 cm tumor - low grade papillary appearance - no other tumors found. Tumor removed with no problems. Follow-up scheduled for approx. 3 mos. Pathology report states: "Papillary urothelial neoplasm of low malignant potential (PUNLMP). No evidence of invasion of subepithelial connecting tissue seen. Code 9, Class III, ICD-9 236.7" "In WHO/Koss grading system, this corresponds to grade 1 papillary transitional cell carcinoma, noninvasive." (Question: was this tumor malignant or benign "potentially malignant"?)

On 6/8/09 Mother visited urologist complaining of a bladder infection. After dealing with that issue they discussed her cancer. He explained he wanted to do cystoscopy again rather than treat with medication. She agreed to a followup cystoscopy on 9/9/09. Cytology was negative.

On 7/31//09 mother presented with kidney stone. After dealing with that issue (decided to let her try and pass it like she had with previous stone), urologist took opportunity to again discuss cancer treatment plan and again discussed cystoscopy versus medication. Mother agreed to followup cystoscopy on 9/9/09.

On 9/9/09 mother presented with bladder infection and kidney stone pain. After dealing with those issues, urologist performed in in-office cystoscopy and noted "very small bladder tumor on right lateral aspect of bladder. This is obviously papillary and low grade." He further noted that she "would not tolerate procedure under local" and ordered a day surgery fulguration of the small tumor. Mother agreed.

On 10/6/09 urologist performed TUR on the recurrent tumor on the right side bladder neck. Although he said tumor singular he later notes tumors pleural (FWIW). Post op notes state: " . . . two obviously low grade papillary tumors, the first and smaller one was removed on its stalk, but basically dissolved in the process. The second was removed using two cold punch biopsies. The area around the base was slightly bubbly and was not totally normal and was included in the second biopsy." The area was then fulmugated widely. No other tumors found. The pathology report notes: Tumor from right side of urinaryy bladder neck, TUR. Low-grade noninvasive papillary urothelial carcinoma. Code 9, Clas III, ICD-9 233.7 It then goes on to state: Pathologic tumor stage: Ta Nx Mx

On 12/7/09 mother returned for a followup visit. Urologist ordered follow up in-office cystology for 1/23/10. He also discussed "in great detail" "the diagnosis of transitional cell carcinoma of the bladder." He is recommending BCG for at least 6 treatments. (note that mother said he recommended chemo - clearly she was confused by the discussion). He gave her some literature on the subject, asked her to consider BCG and said they will again discuss the issue in Jan. during the next visit.

So, bottom line is that she definitely has bladder cancer with a recurrent tumor. It sounds like the tumors were malignant but non-invasive and localized. Probably the best situation with the highest survival rate?

I'm still trying to get my arms around all this and need to be able to explain it all to mother since she tends to the dramatic and focuses on the negative rather than the positive. I'm hoping that this is all good news or at least as good as it can be. Any and all help with explaining the prognosis and procedures (especially BCG) will will be greatly appreciated. Mother seems to be a bit leary of her urologist but after reading the file and looking at Mike's flow chart (thanks Mike for that - it is extremely helpful) it seems to me that he is going by the book.

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11 years 2 months ago #29223 by mmc
Replied by mmc on topic Newbie Here - When to Start Chemo
TLW,

We don't mind at all. We understand how overwhelming this can be and helping others navigate through this is one of the main reasons many of us frequent the site.

On the lab reports, look for tests such as "Cytology", "NMP22", "FISH".

For the pathology reports, it might be easiest if you type in the findings word for word. That can be one of the most confusing bits as they often do not come right out and say the stage or grade but use keywords indicative of stage and grade. Sometimes they will say things such as "does not rule out" and the like. The important part there is why it something can't be ruled out.

We're here when you need us.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 2 months ago #29222 by tlw
Replied by tlw on topic Newbie Here - When to Start Chemo
I faxed an executed HIPAA form to the doc and his office is sending me my mother's file. Apparently, it contains operative reports from the two procedures along with the two path reports associated with them. There's a bunch of lab reports as well. Hopefully, I can get through them and if I can formulate some reasonable questions, if ya'll don't mind too much, perhaps you can shed some light on what's going on and what to expect. Frankly, this is a bit overwhelming and I want to be sure I'm there for my mother since I'm all she has left.

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