why treatment doesn't work?

16 years 9 months ago #6258 by Mike
Replied by Mike on topic why treatment doesn't work?
or does it?.....65 yo male diagnosed with stage 1grade 2 transitional cell carcinoma in april 2001......had first turbt in june 01 followed by a round of mitomycin.....over the course of the next years went in 8 more times for turbt but didnt always have a recuirrence or get chemo....subsequent treatments were with BCG (3)......2005 cancer 'invading" right ureter......get drs office cysto every 3 months and 0nce a year same day in hospital for ureteroscopy.....if doc doesnt think i need the BCG he give me a does Mito post-op........currently am getting round of Mito........pathology report from May 07 indicated possible low grade recurrance in or near right ureter...doc says it didnt look like C to him but is aggressive in his treatments...i am considered a "high-risk" for recurrance......so to me, as much as an inconvenince it may be, i will stick to the cirretn plan.......good luck all- Potts

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16 years 9 months ago #6255 by Rosie
Replied by Rosie on topic why treatment doesn't work?
Linda,

I have had 4 recurrences but never had any visible nor microscopic bleeding. None of those who I have been in touch with who have had recurrences have had any visible blood to signal a recurrence. I guess there are some who do have visble bleeding.

It would certainly be wonderful if your healthy food diet prevented any recurrence. MY THOUGHTS should they Re-appear remain the same - BCG has not been effective for low grade papillary nuisance type bladder cancer. Was mitomycin or some other chemical agent instilled in your bladder after your TURB's. Do you have written reports for pathology and operating room? What does it state. I think I could be of much more insight if I had that information.
Rosie Ambs

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16 years 9 months ago #6252 by Mystic
Replied by Mystic on topic why treatment doesn't work?
HI ROSIE,

I HAVE WHAT YOU CALLED BY THE DOCTOR HIMSELF "A NUISANCE" AND LOW GRADE PAPILLARY GRADE 2 ON THE LINING. HE STILL WANTS TO DO THE BCG TREATMENTS, THAT IS WHY I SUGGESTED WAITING TILL SEPT TO START THEM.

I DID ASK HIM LAST TIME WHAT WOULD HAPPEN IF NOT REMOVED, HE SAID I WOULD START BLEEDING. I HAVE NEVER HAD ANY BLOOD IN THE URINE AND EVEN TESTED THERE IS NO BLOOD IN THE URINE, I HAVE NO PAIN, BUT AS HE SAID THEY ARE A NUISANCE, I AM PRAYING AND THE 9 VITAMINS +++ THE VEGGIES AND FRESH FRUIT WILL STOP.

YOUR THOUGHTS SHOULD THEY RE-PPEAR.

THANK YOU.
LINDA

Linda

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16 years 9 months ago #6047 by elmo
Replied by elmo on topic why treatment doesn't work?
I tried to get disability or SSI but because I took Paid time off for the time I was out the refused to coever me. I think that if you are not working and are losing income then you may qualify. I belive the diagnosis and the ongoing treatment will qualify you but you alos need a lose of substancial income. Only my experience!

Good luck!!!!

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16 years 9 months ago #6036 by Rosie
Replied by Rosie on topic why treatment doesn't work?
Mystic Linda and Star,

Many people have had recurrences after BCG. Failing BCG and having recurrence can be a real threat to people who have high grade - Grade 3 and or aggressive CIS - Carcinoma insitu. Many people with low grade papillary grade 1 and 2 have numerous recurrences of the same grade and it is referred to by many bladder cancer specialist urologist/oncologists as a "nuisance" type cancer. A nuisance because it is of little threat to invade or spread but does keep recurring. That is why some doctors who have done long term study on low grade papillary encourage watchful waiting or monitoring of the growth rather than immediate surgery or treatment. It seems your two urologists treat something seen immediately. Mine first one did also until I stopped agreeing to immediate surgery or treatment after reading the operating room report from my 2nd recurrence. It read "of note, when I touched the one red spot with an instrument it fell apart. The other spot was too small to send to pathology." I then let the next recurrence grow and watch for nine months. The next one for one year. The present growth has been monitored and watched since February of 2006. It grows very slowly and the docs agree on the growth being a low grade papillary. The docs are from different practices but I have a picture to show them. Reading the European and Dr. Soloway study on papillary recurrences would be quite informative for you as it was to me. Hope this helps. It is possible your tumor could disappear Mystic Linda but not probable from just eating correctly. It that were the case, mine would have disappeared also. I copied and pasted the articles below from blcwebcafe website

Update 2006: Two articles support 'watchful waiting instead of automatic removal of low grade superficial bladder tumors:
Expectant treatment of small, recurrent, low-grade, noninvasive tumors of the urinary bladder,.."As long as the tumors are low grade, the risk of invasion or metastasis is zero. Every small papillary tumor does not require removal when observed. Some of these tumors grow very slowly and, with proper reassurance, can be safely monitored. "Mark Soloway; Miami; Urologic Oncology: Seminars and Original Investigations Volume 24, Issue 1 , January-February 2006, Pages 58-61 PubMed

Watchful Waiting Policy in Recurrent Ta G1 Bladder Tumors - Conclusions: Small, recurrent papillary bladder tumors after resection of low-grade Ta tumor(s) pose minimal risk for the patient. A watchful waiting policy— without resection of the tumor—may be considered in these patients Ofer N. Gofrit, et al.Israel; European Urology Volume 49, Issue 2 , February 2006, Pages 303-307 PubMed

Rosie Ambs

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16 years 9 months ago #6033 by Mystic
Replied by Mystic on topic why treatment doesn't work?
HI,

I HAVE HAD 4 BLADDER SURGERIES IN A YEAR. EVERY 3 MONTHS WHEN I GO FOR THE SCOPE HE FINDS A LITTLE ONE AND I HAVE SURGERY. THE FIRST 3 TIMES I HAD A CATH. IN FOR 4 DAYS, AFTER I WAS DIAGONESED FOR THE 4TH TIME I DECIDED TO GET A SECOND OPINION AND THE NEW SURGEON DID SEE THE SAME THING, BUT WOW WHAT A DIFFERENCE, I WENT IN AS AN OUT PATIENT, NO CATH AT ALL (MIRACLE) CAME HOME AND NOT EVEN PAIN. HE WANTS TO START BCG TREATMENTS SINCE IT IS THE 4TH TIME IN A YEAR, BUT I AM WAITING TILL SEPT TO SEE WHAT THE NEW SCOPE SHOWS, PRAYING NOTHING.

YOU HAS THE BCG TREATMENTS AND THEY KEEP RE-OCCURING???

MYSTIC


Linda

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