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Worried…
Hi everyone,
My father is 61. He had his first hematuria on the 1st of Jan 2008.
After a regular cystoscopy he was told to have numerous “finger-shaped” tumors of 3-4mm. of length all over the bladder, some even at the beginning of the urethra. “Two or more interventions would be necessary to clear it out”, the doctor announced.
A CT scan revealed an inconclusive diagnosis: grade/stage can not be determined. All we know for certain is that the outer muscle has not been reached by the tumor.
He won’t have a biopsy until the end of the month, because the urologist doesn’t consider his case “that urgent”.
My father feels he must trust the urologist’s judgement and we (his family) want to support his decision in such difficult times, of course.
Yet, do we have any reasons to be as worried and doubtful as we are?
Many thanks
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)65 Replies-
I wish I could give you more details but this is all the doctors have said to my father.
I will keep you informed as soon as I learn anything new.
Best
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)Yep you’re right Julie.. fluorescence in situ hybridization….its the FISH…..
I was hoping for something new…. :P DOH!! Pat
I wonder if this is what we have been calling the FISH test? I looked at the Urovysion site and the explanation mentioned using Fluorescence to look at the cells. Julie
Volunteer Coordinator
ABLSCInteresting Gabriel…this is a test by Abbott in Des Plaines, Ill………I shall have to inquire if we’re using this currently in the states…..probably in trial…???? Pat
Hi!
Many thanks for your responses. We’re following your advice and my father will be taking Oncovite until June, at least.
He’s been informed by doctors, that is when he will have a Urovysion test http://www.urovysion.com/ and possibly a 2nd TURB.
Best wishes to all and love,
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)
Gabriel- re the Oncovite, my understanding is you keep on taking it as long as the BCG program is going on….this includes between maintenance rounds. On the interval from last BCG to cysto – I’ve asked that several times and the consensus seems to be around eight weeks, give or take. My ex-uro was going to do a cysto after just two weeks at which point I moved on to a new uro for that and a number of other reasons. best to you and your dad. brewster
Hey Gabriel,
Well, all around, I’d say that things sound pretty good for your Dad. Since I live in the US, I am not so well versed in European protocol for Bladder Cancer. I can only sort of make a comparison of experiences.
My own Doc had his own pace for scheduling a cystoscopy after the initial 6 BCG’s. All that I seem to remember is that the cystoscopy took place some time after the 6th BCG instillation but before the 3 month interval that began the Maintenance BCG regimen. I did not have a Urogram after BCG treatment.
Also, I just don’t have any research information for how long one should continue with the Oncovite after the cessation of BCG treatments. At my personal choice, I continuted my similar supplement for about a year and a half after my diagnosis. I didn’t see how it could hurt anything, but I don’t have a standard answer. I tried to search the Dr. Lamm site but couldn’t find a standard answer there either.
http://www.bcgoncology.com/treatment/vitamins.html
From the tone of your post, I should say “so far, so good”. Once again, I feel that your father is very lucky to have you fighting in his corner.
Best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi everyone!
My father has now finished BCG.
Surprisingly, one week before his last instillation, a 3-dimensional scan (urogram) was performed. It showed he was clean.
From the literature that I’ve read and what I’ve read in this forum, scans during BCG are not very useful due to the inflammation of the bladder. Am I wrong?
Doctors are now going to wait to perform a cystoscopy but we don’t know when. When should it be?
One last question: until when should he be taking Oncovite?
Love to all!
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)
Thank you all for your responses.
My father is now following the BCG maintenance schedule finding bladder spasms more bothersome and having fever with every installment.
He is taking something similar to Urelle and slowly giving up coffee.
Our biggest concern is the doctor still not testing urine for bacteria…
Last week another doctor gave him antibiotics!
Everything seems a bit loose at the moment and he’s being told he’ll have a second TURB instead of a cystoscopy!
They said “we’ll take a look and if we find tumours, we’ll take advantage of the opportunity to remove them”.I’ll let you know what happens. Love
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)Hi Gabriel…….just wanted you to know that your fathers refusal to give up coffee could be a problem…….Drug Interactions
Quinolones, including norfloxacin, have been shown in vitro to inhibit CYP1A2. Concomitant use with drugs metabolized by CYP1A2 (e.g., caffeine, clozapine, ropinirole, tacrine, theophylline, tizanidine) may result in increased substrate drug concentrations when given in usual doses. Patients taking any of these drugs concomitantly with norfloxacin should be carefully monitored
Also with this drug its important that you do not give vitamins at the same time…2 hours before a meal or 2 hours after a meal ok……and lots of fluids..not coffee…should be given………….Pat
Gabriel,
People seem to have different tolerance levels for the accompanying pain and bleeding associated with BCG treatments. As someone who has been there, I can tell you that the treatments can get pretty rough.
I wouldn’t exactly say that I’m concerned, but, I will say that I am surprised that your father is not being required to give a urine sample on the day of treatment in order to test for bacteria in the urine.
The only other thing that you might mention tomorrow is about the spasms. Bladder spasms on top of burning and bleeding must be pretty awful.
I hope he feels better soon.
Best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Gabriel,
If your father is having bladder spasms, you may want to ask his Dr about “Urelle”. It is a bladder antiseptic taken orally, it also reduces the spasms.
I don’t know if it can be use in conjunction with his treatment but it worth asking about.
My Best to you & yours,
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hi Rosemary
The answer unfortunately is no: he’s still not getting cultures the day of treatment + we don’t know whether he’s got a UTI or not! :(
Fever seems to be stable at this very moment.
Tomorrow morning they’ll go see the doctor. Are there any specific questions you recommend them to ask? I will pass on your notes on UTI (I’ve done it before but I’ll insist!).
Thanks so much as always for your quick response, love,
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)
Hey Gabriel,
So sorry to hear about your Dad’s great discomfort and fever. In my opinion, you have done the best thing for him by taking him to the Emergency Room.
It’s pretty normal for bleeding and burning to increase with subsequent BCG treatments. It sounds like your Dad is also having bladder spasms which I hear are really, really painful.
The trauma that occurred at the time of catherization may have a bearing on the increase of pain and bleeding, but there is no way to know until next time. I guess he’s getting a little break from BCG’s for a few weeks, right????
I’m a little confused as to why your Dad would have a BCG treatment if he already had a UTI. Are the Doc’s trying to say that the UTI occurred during BCG treatment? Are they still not doing a culture the day of treatment????
Lot’s of questions.
Keep a really close eye on that fever, though.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi All!
My father has had his 6th instillation of BCG this morning and his fever this evening has increased up gradually up to 38.2ºC (100.76ºF)…
and these reactions: more bleeding than usual the first times he urinated, more pain with sudden whiplashes of it around the groin area, difficulties urinating with some coagulated blood coming out.
Apparently, the catheterization was more difficult than usual. Does this mean anything?
Because he was a bit scared – in the absence of his urologist – he went to emergencies and the urologist at the clinic has prescribed him with an antibiotic called Norfloxacino (Noroxin or Chibroxin).
Is this the right thing to do?
You guys have told me in the past that moderate fever on the day of BCG is normal… isn’t taking an antibiotic on the same day of BCG and first day of fever a bit too rushed?? What if fever increases very much?
Please respond ASAP.
Love to all
Gabriel
My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (…)Sign In to reply.
