Recently diagnosed & scared

6 months 2 weeks 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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6 months 2 weeks 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
Forum Moderator

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6 months 2 weeks ago #59952 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Not sure if this is the place to post this follow up but I am curious if people in the same situation and timeframe as me get a PET CT scan done. Based on some of the physical issues that I am having I am wanting to see if the cancer has spread that would require an immediate treatment strategy. Thanks again

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6 months 3 weeks ago #59950 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Sara Anne. I appreciate your reply & insight and feel good that I'm following the appropriate process and next steps.

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6 months 3 weeks ago #59949 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Alan. I appreciate the quick reply and the thoughtful response and will continue to educate myself on this disease, treatment and my options.

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6 months 3 weeks ago - 6 months 3 weeks ago #59947 by Alan
Replied by Alan on topic Recently diagnosed & scared
Welcome RileyNH,

Take the deep breath and be aware that most of these are beatable and treatable! Going to a URO was a good move and the progression of tests is very logical and normal. My PCP tested for an infection first after passing gross (visible) blood (hematuria) and that is about the biggest difference in our comparison. That sent me to the URO promptly. Urination issues alone often will not always send someone to a URO.....although I think it is still good idea for anyone else reading our threads as bladder cancer does not always present with blood. CT scan with cystoscopy are the "gold standard" for protocols and a second TURB is done when the first reveals high tumors or other indicators. So, you appear to be in good hands. Waiting about 6 weeks is also about right to let you heal from the first and is good medicine to confirm things. Along those lines, some opt for a second opinion for fresh eyes and peace of mind. Drinking lots of water is always good.

Your other symptoms? By all means let your Doc know about those. The CT scan should have ruled out other issues. I know after I was diagnosed every pain or creak I was asking myself is there more. My brain was in overdrive. That went on for 6-8 months. Keep posting as you go as someone here will have some insight. Read about about BCG and other immunotherapies as that is the normal protocol for high grade, non invasive tumors. Last item, if the URO hasn't warned you, your area that was burned/cut should pass a clot 10-17 days post. I did and would have freaked out had I not been warned.

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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