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Just Diagnosed -- What Next?

3 years 3 months ago - 3 years 3 months ago #53526 by Alan
The CT scan and x-ray in all likelihood are just being cautious to be sure there is nothing else extra going on. Which is usually the case. These are normal and routine prior to biopsies (TURB).

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 3 months ago #53525 by RJake1
Thank you. Another question, if I may.

My TURBT is set for June 21. My Dr. ordered a CT Scan Pelvis/Abdomen (contrast) and chest X-ray which I had done yesterday.

I read in Cleveland Clinic website that these tests are done only AFTER biopsy has determined invasive cells.

Do you think my Dr. ordered these as part of normal routine (being cautious) or does it indicate her feeling that my cancer is invasive just by what she observed in cystoscopy?

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3 years 3 months ago #53523 by sara.anne
A second opinion is indicated any time that you feel uncomfortable with a diagnosis or treatment plan or situation;
if you have a complicated condition; if there are differences in opinion about the best course of treatment; when your treatment plan doesn't seem to correspond to what you expect; if something just doesn't feel "right"

No matter what, you want to know how much experience your doctor has with bladder cancer; many urologists treat mostly prostate problems and are NOT experts in bladder cancer treatment. Don't be afraid to discuss this with your urologist.

If you feel comfortable with your doctor and his/her recommendations for treatment echo what you have learned elsewhere (but be careful of Dr. Google!) you probably do not need to get a second opinion. If your condition becomes more complicated...definitely. My urologist has said that if we ever get to the point that he would recommend bladder removal, he will INSIST that I get a second opinion.

And, the best result that you can get from a second opinion is that whatever your doctor is doing is the best!

If is a very personal thing...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 3 months ago #53522 by RJake1
Thank you for the understanding and support. Any thoughts on when I should seek a 2nd opinion? Or even IF I should?

The thing about second opinions is that one tends to think the 2nd opinion is the better opinion, especially if it reassures the patient in some way. That isn't necessarily so.

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3 years 3 months ago #53498 by sara.anne
Your urologist is absolutely right. She can guess that this is not a bad kind but until she does the TURB and the samples are sent to the pathologist for analysis she really will not know whether it is high-grade or low-grade. In either case and particularly since it appears to have been caught early it is highly treatable and even curable.
I was diagnosed with high grade over nine years ago , had the recommended BCG treatments and have been cancer free ever cents . This is a typical result .
Yes it is a scary diagnosis and we have all been where you are now . I can tell you to relax and wait for the results from the pathologist but that is much easier for me to say then for you to do . Once you do have the results , and remember that it can take a week or more after the TURB to get these results, your urologist and we can give you a much better idea of what to expect .

Just remember that the odds are very much in your favor .

Wishing you all the best ,

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 years 3 months ago #53497 by Cynthia
Sorry you are here but welcome to our community. What you're Urologist is talking about is that 3/4 of bladder cancer is non invasive when diognoised. That means that they are on the surface of the bladder linings and have not grown further into the bladder. The other thing she probably is thinking is statistically not only are most bladder cancer found to be non invasive but low grade meaning slow growing on diognisis. If that is the case removal and keeping a watch is the standard.
I can remember being on the internet reading horror stories, what I didn't realize then is people with good outcomes usually don't spend a lot of time writing bout them they are to busy going on with life. I also read things that I have experienced as being beyond bearing and they were pretty much a shrug for me, perspective is an amazing thing isn't it? I am a servivor or invasive high grade when I was 48 so even bad news is survivable I am a case that proves that point. You don't know what you are dealing with until your pathology comes back and it serves no purpose scaring yourself silly about things that probably don't apply to you. Just know that the odds are with you if you do have badder cancer.
It will probably take a week or so after your TURB to get your pathology. Until then be kind to yourself stop reading horror stories and came here if you have questions. There is a lot of good reading here that comes from trusted sources once you know what applies to you. Remember we are here for you.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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