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Acceptable Interval Between Diagnosis and BCG?

14 years 2 months ago #2109 by Abbie

This is my first post. On 8/9/06, following a cystocopy which became a TUR with fulgration (or whatever that word is :), I was diagnosed with, Papillary bladder cancer which was multi-focal.  I was told it was between a T0 and T1, Grade 3.

I am a 61 year old male, who is generally in excellent health.  I of course have a million questions but I will limit my first post to the one that is worrying me most currently.

Following the surgery I continued to bleed.  I went to the emergency room on 5 separate occasions, mostly for bleeding and clots, once for an infection.  I was hospitalized and given three units of blood over 4 days on Labor day weekend. One month gone.

The Dr. wanted to wait to start my BCG.  The treatments were supposed to begin on or about September 26. For 6 consecutive Tuesdays. Two months down.  I showed for the first one, which was cancelled after urine sample showed too much blood and infection.  Did two in the following 2 weeks.  Common side effects but nothing to really to complain about.  Showed for the next one and they couldn't do it when urine sample showed staff infection.

I'm taking Macrobid and I'm supposed to start again this Tuesday, #3. Three months elapsed since surgery.

My worry? It  has been almost 3 months and for various reasons, I have only had two treatments for a cancer which was described to me as non-invasive but very aggressive.

From the posts I have read it seems that the experience with BCG is quite variable in terms of how much one receives and over what period of time.

Does anyone have a sense of how long the treatments can be delayed before I need to worry that the cancer is back while no one is looking? I haven't asked the Doctor this question yet because I wasn't worried until they cancelled the last one.   I will ask the NP who administers my treatment Tuesday but I was hoping to get some perspective on others experience before I inquire.

Thanks in advance.

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14 years 2 months ago #1787 by cta7978
I would push to get BCG treatments ASAP. Better safe then sorry. I'm not advocating being a huge pain in the ass, but I wouldn't feel comfortable until I was treated.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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14 years 2 months ago #1774 by wendy
Aw Fred, I'm sorry you feel like toast. You are not toast! Bladder cancer has many treatment options that actually work.

This ongoing infection is definitely a problem regarding timely treatment. I'm not sure what is the best thing to do. Please find out!

You are your own best advocate and it's wise to be aware of the pitfalls after a cancer diagnosis. Find out all you can about every detail of your diagnosis thus far and be pro-active on your own behalf. It can mean all the difference.

Hang in there and please keep us posted about your progress. Keep asking questions.

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14 years 2 months ago #1773 by FredW
Thanks for your reply!

Went for BCG Tuesday and they couldn't do again due to infection. Staph, gave me macrobid. Clock keeps ticking.

I asked the PA, if the delay was threatening me. She said not yet :-?, she needed to talk to the Doctor and I should call her Monday.

I'm toast.

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14 years 2 months ago #1768 by wendy
Well....after re-reading your first post I am less than thrilled that the doctor has let you walk around with multifocal cancer and delaying treatment. Mike's reply to you that 3 months go by between ct scans, well that is follow up for those who have just undergone bladder removal.

It is also common to wait 3 months between cystos for the newly dxed/ superficial blc.

But T1 and CIS are dangerous and shouldn't be left to simmer.

Bladder cancer is notoriously understaged and second opinion on path reports can be seriously enlightening. I want you to be very sure about the exact stage of your cancer. BCG doesn't help T2 and up tumors.

This review mentions Lymphvascular invasion and hydronephrosis of the kidney as further risk factors:
"In a group of 422 patients from the University of Michigan, understaging was demonstrated in 43% of patients with superficial and non–muscle invasive cancers and 59% to 60% of patients with muscle invasive disease.[6] Within this cohort, 32% had evidence of lymphovascular invasion (LVI). Those patients with LVI had a much higher rate of understaging (87%) than those without LVI (46%). In multivariable analysis, LVI was the only independent predictor of understaging; patients with LVI had nearly 8 times the risk of understaging than those without LVI (P < .001)."

Here is info for you and your doctor:
http://blcwebcafe.org/synergoworkshop1.asp#witjes Discusses risk factors and a calculator for recurrence and progression of Ta, T1 tumors, for professionals:

The following hair-raising article is about the hazards of delaying cystectomy with T1 tumors: 'Intravesical treatment: Hazard to bladder cancer survival?'

"A study presented at the AUA annual meeting by researchers from Columbia University in New York asked the provocative question, Are physicians overusing intravesical therapy in patients with T1 bladder cancer? "

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14 years 2 months ago #1717 by FredW
Thanks Wendy. Didn't worry me, just gave me more questions to ask tommorrow.

I feel good about the Doctor. I left the one who originally did my surgery after I kept calling and complaining abou the pain, clots and bleeding. The answer was always, go to the emergency room, which I did four times with no relief. The one I have now was recommended by an Oncologist I consulted for a second opinion.

The Labor day trip to the ER was to a different hospital, different Dr. They did several days of continuous bladder irrigation and the bleeding stopped. I went home and haven't had that problem since. Was told to take it easy physically.

I think the bleeding was caused by bad advice. After the TUR I was told I could resume normal activities after four days. Also, that I could resume my aspirin therapy which I do for another condition.
I played golf, walked 18 holes, a few hours later was bleeding profusely and on my way to the new ER. >:(

Originally I was told there was more than one kind of cancer in several locations. I think I better get a copy of the Path report myself.

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