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3 years 1 month ago #49761 by Oceanwaves
Thank you sara.anne, it's a relief just to be able to share this without causing extra concern among family and friends.
We are in Western Canada with a Gov't run healthcare system and although we can get a second opinion, all the urologists here are likely extremely busy and tend to book far ahead. The CT scan, because of the current provincial gov't may be delayed due to pressure to keep costs down.
I will attempt to get an office appointment with the urologist to touch base, and then see if we feel the need for a second opinion or perhaps pay for a private CT scan ourselves. I might also try to have my husband go back to our family GP and bring up the back pain too. It's interesting that you say not all urologists are as knowledgeable as others in treating urinary cancers, I will keep that in mind going forward.
Thanks for all your info and perspective.

09/30/2015 1st cystoscopy, multiple tumours.
10/14/2015 1st TURBT
10/20/2015 Cis, high grade
11/1/2015 first BCG, then every week for 6 treatments
01/11/2016 2nd TURBT

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3 years 1 month ago #49759 by sara.anne
So sorry about your husband's diagnosis. I am even sorrier about the "care" he appears to be getting from the urologist!! IF you feel that the urologist is not answering your questions sufficiently, of providing the level of care your husband deserves, it may be time to find another urologist.

One of the rules of our "Forum Manifesto" here is GET A SECOND OPINION. Bladder cancer is not to be fooled with...with the correct treatment and oversight it is often highly curable. For example, I was diagnosed with CIS in 2008 and am still here and, so far, cancer-free. Part of my diagnosis was a CT-urogram to assure that there was no cancer anywhere else in the urinary tract or kidneys, and one is to be scheduled every five years.

As for your husband's back pain, it should definitely be mentioned to the doctor. For what it is worth, my CIS symptoms did not disappear until after the
first series of BCG treatments.

If you are interested in finding a good place for a second opinion, or for treatment, our Home Page has a guide to places with special expertise in bladder cancer diagnosis and treatment:
http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder
Also, if you tell us where you are located geographically, some of our members may have suggestions for you. It is critical that your husband receives the very best treatment available...so many urologists are specialists in prostate issues and are really not as current in the treatment of bladder cancer as they should be.

Please let us know how he is doing

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Oceanwaves

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3 years 1 month ago #49758 by Oceanwaves
Hello,
My husband is 58 yrs old, non smoker, non drinker with no family history of bladder cancer. He works out regularly and I don't remember the last time he had a cold or flu..it's been years. Occupationally, he has little exposure to risky chemicals, etc.
He has been diagnosed with high grade bladder carcinoma in situ (not invading the muscle layer). He had the TURBT done Oct. 14th, twelve days ago to remove several tumors. He is scheduled to start 6 weekly BCG treatments next Sunday, Oct 31st and then another TURBT in early January.
This all began with pelvic pain (no blood in urine) which was initially diagnosed by our family doctor as epidydimitis in March. After a few trips back the doctor, he was referred to a urologist who was confident it was prostatitis. The cyctoscopy then showed the presence of tumors which the urologist said 'looked benign'.
There has been little discussion with his urologist who is currently his only specialist. We were given no reading material, etc. The tumor results after resection were delivered by phone to my husband and not in his office as I was expecting. I understand how busy this fellow might be, but we have not been able to ask any questions. I have consulted Dr. Google in the meantime and watched a very informative video on the UCLA website. We are cautiously optimistic about his potential survival expectations.
My husband mentioned to his urologist that he is experiencing back pain and is concerned about other cancer in his ureters and kidneys. My husband asked about a CT scan...the urologist says we're not going there yet...
We think the back pain is likely muscular because of all the time he has spent lying down before and after the TURBT, but are now feeling a bit paranoid. I'm sure this concern could have been alleviated with more interaction with his urologist.
I'm also concerned about the pain he still is experiencing 12 days out. He still has discomfort after urinating and can only be mildly active for an hour or two before he needs to take more acetaminophen and lay down with some ice.
Does this seem in the realm of normal?
If he's not improved in a couple of days, I'm planning on calling the urologist's office to see if we can get more guidance.

09/30/2015 1st cystoscopy, multiple tumours.
10/14/2015 1st TURBT
10/20/2015 Cis, high grade
11/1/2015 first BCG, then every week for 6 treatments
01/11/2016 2nd TURBT

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