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New and scared!

2 weeks 12 hours ago #59848 by Alan
Go on and enjoy life! My wife was in a similar situation 30+ some years ago. She had the cystoscopy, and Ct scan then a retro-pylogram where they look all the way into the kidney per unexplained bleeding. They never did figure out what was the cause and she is around all these years since. Sometimes it is an infection, stones passed or what long distance runners get jostling their insides. Many times no cause is identified. I know another 2 women that have had the same history. One that passed small amounts of blood for quite a long time (a couple of years if I recall) and still is living.

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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2 weeks 22 hours ago #59841 by Lexi2269
I thought I would post a quick update. I had the CT Urogram and I was not scheduled to have the Cytoscopy until the end of this month. I was able to make some calls and get into a Nationally well known Clinic with a Urologist/cancer surgeon. I met with him and he looked at the CT scan beore the radiologist read it. He did not see anything on the CT Urogram. I mentioned the blood in urine and the Atypical Cytology. He mentioned that 2 out of 10 people may get an abnormal cytology and it becomes more concerning if the Cytology is suspicious or does show definitive cancer cells. Non the less he said we need the Cytoscopy done. I was in 2 days later getting the scope. It was totally pain free done in less then 2 minutes. I could see my bladder on the screen. He said he saw nothing of concern and looked all around then focused on the urethra and that looked normal. He said it was a completely normal Cytoscopy. My CT showed some non obstructing kidney stones.

After the Urogram something interesting happened. I think it was related to the contrast agent. I had horrible bladder pressure and a hard time urinating. My kidneys also were in terrible pain. This seemed to pass about 5 days later.

I am still seeing blood on the urine test strips that I am peeing on but nothing visible in the toilet. I also have some discomfort or mild stinging at times when I pee. I don't have an infection.

I know this is all good news with the tests. He said to follow up with my doctor regarding stones if I continue to see blood in the urine. Are my chances of developing BC higher now and should I get scoped yearly? The doctor was not concerned at all based on my normal results.

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4 weeks 3 hours ago #59776 by sara.anne
Four weeks is not too long. IF you have cancer, it has been there for quite a while and it doesn't grow rapidly enough that four weeks would matter. Four months would be too long!

Yes, you are having cystoscopy in the office. The urologist will insert a small camera into the bladder and look around. For women this procedure is usually "no big deal" sort of like a pelvic exam. For males with different anatomy it can be more unpleasant. IF it appears to the urologist that cancer might be present he will do basically the same procedure while you are under general anesthesia so that he can snip out obvious tumors and take biopsy samples for pathology analysis. This is an outpatient procedure and usually you just get up and go home after you wake up.

The probability is that if this is bladder cancer it will have been caught early and is very treatable. The treatment protocols would depend on what the path report states. If it is low grade (slow-growing) the usual thing is just for you to have cystoscopy exams every three months for a while and then less frequently as time goes on. If it is high grade (rapidly dividing) there are several options available. For example, mine was high grade so I had a form of immunotherapy (BCG) and have now been cancer-free for over 13 years! But until you have path results you won't know what will come next.

I am sorry that your husband is not there for you to lean on. Perhaps he could go with you to your next urology appointment and speak with the urologist? He needs to know that this is NOT the end of the world and that the odds say that you will be fine. But you do need to have someone to dump on.

Sara Anne

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

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4 weeks 5 hours ago #59775 by Lexi2269
Thank you so much. Your the only one I am talking to about this. My husband is not able to deal with this at the moment and I don't have any one else I want to talk to. Does 4 weeks sound far out for the scope procedure? I called to see if I could get in earlier but I could not. I am waiting on the results of the CT Urogram. You mentioned the other procedure would you mind sharing more about that? The scope I will be awake and it is in his office.

To make matters worse I am having a period I am very close to menopause. The heavy period is causing bladder pressure. I am not sure if I am imagining it but seems after the urogram with the contrast I have back pain. Thank you for listening.

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4 weeks 9 hours ago #59772 by sara.anne
OK...I may have jumped ahead here. Evidently he is doing a cystoscopy...yup, you were correct. This is an exam where he uses a small camera and just looks inside the bladder (no samples taken.) It will give him a good idea of what is there and the location of any abnormalities in the bladder. IF he thinks it looks like cancer then the next step will be the TURB.

I know that it is hard just waiting!!

Sara Anne

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

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4 weeks 9 hours ago #59770 by Lexi2269
Thank you Sara Ann,

I am scheduled in 4 weeks to have a Cytoscopy? Not sure if I am saying that correctly where he will scope the bladder. That seems like a long way out. I tried to get in earlier but they could not get me in. I am awaiting the CT results.

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