Recently diagnosed & scared

7 months 1 week ago #59954 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
You had a CT scan which helped find the tumors. CT and PET scans give a high dose of radiation and are only used when there is important information to be gained from them. My urologist suggests a CT-urogram only every five years (and I argue with him every five years because I would prefer NOT to have it!)

As has been mentioned previously, your symptoms are not suggestive of bladder cancer. I would suggest that you have a serious discussion with your urologist about this, both to be sure that nothing has been missed and to set your mind at ease.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 months 1 week ago #59957 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Sarah Anne, I appreciate your take on CT and PET scans. Fully understand.

My concern is more that my additional symptoms are caused by the spread of the bladder cancer to other parts of my body and not that they are directly related to the bladder.

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7 months 1 week ago #59958 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Somebody test my rationale. If there was spread of cancer to other parts that aligned to the perceived pains, swollen and aches that I have then something would have been potentially identified on my CT scan. Since most symptoms started post diagnosis minus the original urination issues. Sorry to ask you to play psychologist.

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7 months 1 week ago #59959 by Alan
Replied by Alan on topic Recently diagnosed & scared
Metastatic cancer simply doesn't move that fast. As mentioned in one of my prior posts I too was worried about every pain and ache for several months after my first DX. Your CT scan should have ruled out any other involvement. The body and mind can cause a host of problems when it races. IF you still have serious doubts, start with your URO by asking more questions on what they think, then possibly a second opinion.

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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7 months 1 week ago #59960 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks again Alan. I am dealing with my PCP for the other issues. Although my Urologist/surgeon who did my TURBT is highly regarded as a surgeon it seems that everything else goes through his PAs. My PCP is up to speed and reacts quickly. He noticed on my blood work last week that my blood sugar was 147 where right before surgery it was 90. He sent me for some follow up labs to make sure there isn’t any issue.

A couple of quick questions. Is radiation ever done on a bladder that is non muscle invasive? And visa versa with a muscle invasive bladder is radiation ever chosen instead of removal of the bladder?

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7 months 1 week ago #59961 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
Radiation is not the treatment of choice for bladder cancer although there have been some clinical trials using it. The problem with radiation is that it often does a lot of damage to the surrounding tissue so that as the old saying goes, “the cure is worse than the cause.” I know of several cases where radiation was tried and failed. Then the radiation damage to the bladder was such that necessary bladder surgery was extremely difficult. You certainly wouldn’t try it for mom-invasive bladder cancer. While there are still some trials going on, I, for one, wouldn’t choose it.

Sara Anne

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

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