Large Tumor

16 years 9 months ago #5948 by Rosie
Replied by Rosie on topic Large Tumor

Just a reminder that a high percentage of pathology reports that say T1 are downgraded to TA. This is taken from the webcafe T Category variation. "According to the literature, an initial T1 tumor is downstaged to Ta between 35-53% of cases, while between 3 and 10% of them a T2 or higher is considered" Is your T1 a, b or c? Is it papillary or CIS (carcinoma in situ) If it is really a TA papillary low grade 1 or 2 then BCG is not the newest protocol recommended. Did you have mitomycin after your TURB? It seems those who have had mitomycin right after their TURB have avoided recucrrences. Rosie Ambs

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16 years 9 months ago #5924 by Rosemary
Replied by Rosemary on topic Large Tumor
Dear Mudder,

T1 Low Grade is not the worst news that you could hear. You pretty much (in my opinion) gotta do the BCG's. Some people have no problems with them, and then again, sometimes there are side effects.

Please keep us posted as to how you are doing, and if you have questions about the BCG's, well... many of us have been there.

Take good care,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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16 years 9 months ago #5919 by mattsmudder
Replied by mattsmudder on topic Large Tumor
The dr. called today with my pathology report. It is T1, low grade. I will be going back in a couple weeks to make sure they got it all and then I will begin 6 weeks of BCG. I feel so fortunate to have this result as my tumor was very large filling almost 80% of my bladder. I just feel so lucky and thankful. This is a wonderful board. The information and support here is great. Thank you to everyone. I would certainly appreciate hearing about anyone's experience with the BCG treatments.

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16 years 9 months ago #5779 by wendy
Replied by wendy on topic Large Tumor

I sympathize with your anxiety but I believe you will actually feel better once you know what it going on aside from "large tumor". I have known people with larger tumors that turn out to be non-aggressive and non-invasive, bladder tumors come in many different types, shapes and sized. The large majority of bladder tumors are non-invasive, something like 3 out of 4, so the odds are still on your side that this could be treatable with removal only, perhaps no further treatment will be needed if it is a Grade I tumor.

Uros can tell when something is a cancerous tumor, but they can't be sure of the exact grade and stage, which is the most important factor, until the biopsy. Experts are good at judging, according to a research study by Dr. Herr they were right 94% of the time, but....that study was looking at people who had been already diagnosed and had recurrences. So they were making those judgments with previous knowledge of the patient's history etc....so it's not an exact science by any means and biopsies are the backbone of treatment decisions.

Just because the tumor is relatively large doesn't mean it has been around for many years nor that it will necessarily be aggressive, as Joe's was.

Please take care of yourself, try to spoil yourself as much as you can during this difficult time.. Do what ever you need to do to help yourself stay sane until you know the whole story.

Wendy

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16 years 9 months ago #5757 by Ricky
Replied by Ricky on topic Large Tumor
Speaking only from personal experience, I'm not so sure that a doctor can 100% say a tumor is cancerous by only a visual inspection.

My urologist thought my tumor was cancerous, exised it for pathology, and it came back as a benign inverted papilloma.

So although they can be pretty sure about what they see, there's a reason they send it off for pathology.

Keeping fingers crossed for you mattsmudder.

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16 years 10 months ago #5596 by star
Replied by star on topic Large Tumor
My tumor took up half my bladder so size does not matter except the tumor sheds cells and there is no way of telling how many and when they would like to awake . I have 6 turbt's and 4 rounds of bcg and interferion and still no luck with being clean so be aware of what you have and use this resource and educate yourself. I have found that it is like anything else learn /use/live/give back. good luck. star ;)

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