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Rock and a hard place.

11 years 2 months ago #24469 by mmc

Sorry about my BCG comments. Pat is correct in what she described to you.
Since I had CIS, I sometimes forget that not everybody does. :)

In any case, with regard to the prostate sphincter pain, that was certainly always the most uncomfortable part of getting scoped for me, but certainly nothing like the pain you described. It only hurt like hell for less than a second as he pushed through. Hopefully, they at least used the numbing gel (and let it absorb for about 10 or so minutes before starting). If not, that's part of the problem right there. Make sure they give it time to work also.

As described by others, skill is a part of it also.

I had prostate problems anyway (BHP) but when I went in to get a bladder biopsy at one point my uro did some minor surgery on my prostate also in order to releive the pressure on my urethra. He said that in addition to hopefully relieving some of my symptoms, that it could make scoping a bit easier as well. That might be something to discuss with your surgeon if an in-office cystoscope continues to be a major problem for you.
It's not optional with regard to getting scoped every three months so it's important that you check out options to make the scoping reasonable.

I also agree with the others that if you can get to a major center it is well worth the drive my friend. Major centers have LOTS of experience with all aspects of this disease and very skilled surgeons. The more experience, the better when dealing with bladder cancer. Trust us.... ;)



Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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11 years 2 months ago #24468 by britt
If I lived in the Cleveland area the VA just might send me to The C> Clinic.. They farm out a lot of work there. When I was going to have a defribulator placed a couple years ago, I was sent there for a consult.
My wife wants me to go with a private Dr. All I have is medicare. By the time we deal with the drs fees,surgery, OR costs and hospitalisation the copay would kill us. The Dr wouldnt see me more that once if he didnt get paid.
When we see the VA specialist on monday the plan is to push to have them fee base me due to the nature of my treatment. The catch there is that they pulled all patients out of private care. Even those who had been under long term care for serious prostrate problems and othe issues were denied outside treatmen!
Thanks for the great welcome
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11 years 2 months ago #24466 by Cynthia

It might be worth your while to get all of your records together and do a consult with a major bladder cancer center of excellence. Cleveland Clinic would be the one closest to you. This does not mean you would have to have your treatment there it would just mean that you had a sanity check and would know what you were dealing with and could go forward. As far as scopes skill counts for a lot and as far as embarrassment beinh well makes it a small price to pay. From what you are discribing you well may be low grade and stage and that is good news but it is something you have to keep a watch on. But you have to make sure first just what you have going Pat is right ask for a copy of your pathology reports and go over them with you new Urologist so that you fully understand where you stand.


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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11 years 2 months ago #24464 by Patricia i said BCG is not used in low grade low stage non CIS tumors. The exception is if they keep coming back.
I can't do much about the embarrassment....goes with the territory. But i've never had anyone but a urologist do the flexible cystoscope on me and unless you have a stricture which would produce some pain and if they wait long enough after putting on the numbing gel it should not be anything but mildly uncomfortable. I think its easier for a female as we have a shorter urethra......not that an unskilled person can't make your life miserable.
I just noticed that you said Kettering Hospital which i'm assuming is in Dayton where 2 of my children were born.....Cleveland not that far away. I'm in Cinti and i made the trip and it definately was worth it for me to have the best in the country. Its also #1 in Cardiology in the country.
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11 years 2 months ago #24463 by britt
Looking further on the board I saw non-invassssssssssive topical bladder cancer. That seems to ring a bell. Unfortunately my meds were off when I saw him. He had me on valium for the spasms I was having and I have a very low tolerance to it.
Some body on my pain board mentioned her husband had the BCG treatment. The smae thing they give you for tubrculosis.
If the Dr was able to get the scope thru my prostrat while I was under a general, does that mean that a good dr would be able to do the scope in the lab? Last time they tried was rather embarssing for me. I went in and there were only 2 women in the lab. One to use the scope and the othre ran the machine. That was when they stopped due to the pain. It wasnt just a discomfort. I thought I was going to die from the pain until they pulled the probe out.
Everybody loves the Cleveland Clinic. Its just too far for me.
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11 years 2 months ago - 11 years 2 months ago #24461 by Patricia
Britt...first of all your records from your TURB which is what you had in the hospital are at the hospital and they are yours.......ask for them and sign for them to find out exactly what the pathology report says. It sounds like the doctor is diagnosing you at a very low stage and grade that would require only a routine cystoscopy every 3 months with a flexible scope that can be done in the doctors office with just some numbing gel and perhaps a tranquilzer ahead of time for the panic attacts to ward them off. A good uro knows how to use that scope without pain or discomfort...therein lies the rub...follow ups are at every 3 months. If something is seen a follow up TURB is repeated in the hospital and really a follow up TURB is almost always recommended these days. Its too bad you can't get out of the VA system as you have the #2 Urological Hospital in the Country just up the road at The Cleveland Clinic. Please let us know what you find out.......
by the way regard BCG ......
TheraCys is indicated for intravesical use in the treatment and prophylaxis of carcinoma in situ (CIS) of the urinary bladder and for the prophylaxis of primary or recurrent stage Ta and/or T1 papillary tumors following transurethral resection (TUR). TheraCys is not recommended for stage TaG1 papillary tumors, unless they are judged to be at high risk of tumor it is important to know stage and grade.
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