Cancer Recurrence After Cystectomy

Ok, so your husband was receiving BCG immunotherapy for a recurrence of a T1, high grade bladder tumor, which I assume was removed. How many treatments total before the reactions forced him to stop? I ask because BCG is given in 'rounds' of six weekly treatments, that's called a course. I wondered i your husband has done a course, and now can't tolerate another (second) round...meaning he recurred after a course of six.

One thing I would want to know is why aren't they testing the kidneys and ureters if there is no tumor to be seen in the bladder. It sounds like they were treating the kidney and ureter, or at least planning to. So...they must at least suspect upper tract involvement. This "stage T1, high grade" must be referring to the first recurrence that was removed...but now, how can they give a clear stage and grade, only by looking at cells in the urine (which must be originating somewhere).

Did your husband receive an IVP test, where a dye is injected and the upper tract is visualised? A CT scan? Ultra sound or anything else? These types of tests are standard before beginning BCG, in order to be sure of the stage.

Anything above stage T1 and BCG is no longer is used because it won't help. That's when surgery and chemotherapy come into play. Or radiation (depends on who you see, surgeon, oncologist or radiologist!).

Your husband has already had invasive cancer, and the recurrence was also aggressive. When BCG fails to halt T1 TCC, there are other, bladder sparing drugs or approaches, but it's risky. When cancer doesn't respond to BCG the risk of progression is high.

There are many approaches, and opinions differ, so it might be best to start looking for a good second opinion, no matter what happens. If that's a valid option for you, perhaps we could suggest some good doctors. The most ideal would be to have a uro-oncolgist, who specialized in bladder cancer, part of a team at a good institution with access to the best technology and up to date treatments.

Take care,
Wendy

went to the Doctors and did get some answers . they are not going to give him anymore BCG chemo because he had such a bad reaction the beginning of the second round . the doctor said he has TCC and it's T1 high grade .they found no tumor they found cancer cells that are postive . what he had before in the bladder was CIS T3 high grade but they removed half his bladder and his pelvis lymph nodes .there was no cancer in his lymph nodes thank GOD . they are meeting next week to discuss what to do now . they are thinking of removing the stint ,they put in the stint so that the Chemo would reach into the kidney . We have an appt feb 1 to see the oncoligst . what questions should i ask .

Dear Dotty,

Good, ask questions! Ask for a copy of any pathology reports, if you don't get a satisfactory explanation on the grade and stage and location of the cancer as it stands now, run it by us here and maybe we can help you decipher the info.

If the doctor says again that he is not sure where the cancer is, ask him if there is any test he can perform to find it. What if there actually is NO cancer and he's getting treatments solely due to the urine test result? These tests are far from being 100% accurate! What about checking the whole upper tract, both sides, would that not be prudent? There are a number of diagnostics that are usually performed in order to locate the cancer after a postive urine cytololgy.

Also, there are many different urine tests, cytology being the cheapest and most common. Ask what the type of urine test, cytology or some other urine marker? If cytology, ask what exactly that test showed. Sometimes cytology tests are positive for high grade malignancy to such an extent that it can remove all doubt and perhaps justify treatment without any further diagnostics...but I've never heard of receiving such a localized treatment in the face of an " unknown location."

Was the stent put in to clear a blockage (from tumor?) or was it put in to facillitate giving chemo to the kidney's and ureters? I'm assuming that stents can cause infection, so let's hope it's there for a very good reason, and it would be nice to know what that reason is...

Is the anemia related to kidney dysfunction? The cancer? Something else? Will it effect the course of the disease and treatment?

And last but not least, what drugs are being used to treat the kidney and ureters? You want to know what to expect and side effects are different, depending on whether chemo or immunotherapy drugs are used. Immunotherapy (BCG) is more common than chemo for high grade bladder cancer, or that which spread to the ureter and/or kidney.

All the best,
Wendy

thank you , today we go to see the Doctor and i will ask questions , i don't like not knowing the facts ,you cant fight what you don't know. we got the results of his urin test yesterday and he still has the infection ,so still no chemo . he has a stint from his bladder to his kidney ,im thinking this may be causing the infection ? at christmas he was in the hospital for severe animia and needed a blood transfusion and now he goes for a shot once every two weeks
Dotty

Hi,

Your husband had a partial cystectomy? And now he's getting chemo instilled in the kidneys and ureters...that makes me suspect that the doctor is treating him for either a suspected or comfirmed upper tract transitional cell carcinoma. Due to the type of treatment the stage of the cancer must either Ta or T1, not muscle invasive or the treatment would be different.

Most doctors won't treat a person based on the results of a urine test alone. I feel there should be a definite diagnosis, though, and that you and your husband should be well informed enough to make decisions concerning what happens.

What the treatment is that he's getting and what for? Is it upper tract involvement, kidney or ureter, both? Try to pin him down on the stage.

Maybe another opinion?

Good luck,
Wendy

    this is my first message and am i scared, my husband is 78 years old and had half of his bladder and lymph nodes   removed dec,2005 because of cancer ( we thought we were home free and very lucky . then in Oct 2006  his urin test came back postive for cancer they started chemo again in Dec. but he developed a severe urin infection so now we are waiting for that to clear up. I asked the Doctor where the cancer tumor is and he said he didn't know , has anyone ever heard of not knowing where the tumor is ? he will be getting chemo in his kidney and the tubes running from kidney to the bladder ( can't spell it ) they said his bladder cancer was stage 3 high grade