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5 years 3 months ago - 5 years 3 months ago #45298 by CatherineH
Hello Alan and Doug... See if this helps you write your history (or whatever you wish) in your signature line at the bottom on your posts. YOU MUST BE LOGGED INTO THE SITE FIRST.

To edit your signature block:

1) Click on your avatar picture to get to your profile page.
2) At the top of the page, find the word "Edit" and move your mouse pointer over it to get a drop-down menu.
3) Click on "Update Your Profile"
4) In the 'Edit Your Details' box, there are 3 tabs. Click on "FORUM" tab.
5) There you will find a "Board Signature" box to type whatever you wish to share as your permanent board signature. Then click "UPDATE" at the bottom.

Second option:
1) Go to the HOME page
2) In the far right column, find the LOGIN/PROFILE box.
3) Click on "Your Profile Edit" which is just under "Your Profile". It takes you to the same place as above.
4) See steps 4 and 5 above. You have to click on the "FORUM" tab.

If this doesn't work for you, let me know.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 3 months ago - 5 years 3 months ago #45297 by Alan
I have been clear for almost 5.5 years. I get a scope in about 3 weeks. I got that test staggered from my annual physical-6 months apart as we do cytology on each. That way I have some kind of check every 6 months.

I added a little on my prior post as I am not an accomplished typist! T1 is still normally calls for BCG. Browse around this site, there is a wealth on info. I check here 4-5 times a week so I'll keep in touch.

My high grade diagnosis threw me for a loop for about 10 minutes. Everyone handles it different but, my faith took over on it not that I am trying to start a discussion on that topic. I just said it has happened and what will be will and that I will fight it as you have on your first cancer. I also told myself someday something will get me. Maybe the turnip truck will hit me or my wife-Who knows (a little humor here).

This site changed some of it's way of setting profiles so I don't know how to add history anymore. Perhaps someone else will chime in.

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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5 years 3 months ago #45296 by dman
Just received a message back from my doctor:

There is a possibility it is T1 based on what the pathology report says so not a zero chance. It if were clearly T1 I would recommend a repeat resection of the area. This is a possibility for Ta as well but since the surgery was very painful for you I would favor not doing the repeat resection for just Ta disease. In either case I would recommend BCG. The repeat resection is the only thing that would be different for T1.

What do you think? Surgery was painful, but not THAT painful. If it meant decreasing the spread of CA, I would be willing to go for another one.

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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5 years 3 months ago #45295 by dman
Hey Alan,

Funny, just read your posting on the other topic and was going to befriend you... also can't figure out how to put my history at the bottom of my postings like you have. Went into "my profile" and "my profile edit," but can't see anywhere to put it.

I spasmed after the TURBT and it stopped the nest day after they removed the catheter. I'm on the third week, and still have the feeling my urethra is about to spasm right before I urinate. Am wondering how long this lasts...

How long ago were the other TURBTs you had and how long have you been without any more recurrences? Am hoping I can get through all 6 weekly BCG treatments without a problem. Re: my urologist, I wrote her today re: wondering if she'd misdiagnosed me Ta and if treatment would be different if it were T1 and she hasn't written back yet. It sounds to me like from what the pathologist wrote he wasn't that convinced re: the margins either. A little concerned and wondering if I should ask for a second opinion from another doctor. This doctor/surgeon is very young, don't know much about her. I'm seen at UCSF Urology through my insurance, and I have a feeling all the docs there probably concur with each other.

Re: your prognosis at the end of your posting, thanks, I hope to God you're right... :-)

Doug

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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5 years 3 months ago - 5 years 3 months ago #45294 by Alan
Doug,

While no ones situation is exactly the same, my profile is similar. My papillary tumor was even smaller (.5 CM) and Ta. Perhaps the most important item was the TURB assuming your URO is 100% certain margins were good along with the pathologist as this disease is often under staged. A second TURB is often re-done to be sure although Ta is less invasive than T1. Ta and T1 BCG is a pretty normal protocol and I am going to assume that will solve the problem. I spasmed slightly for awhile-it's been so long ago I don't remember how long. Maybe a week-mildly? Just be sure you bring every little item for his diagnosis. I know a gentleman from where I live that has had 5 DIFFERENT cancers (not metastized) over the last 20 years. Brutal but, he has beaten them all. From everything I have read papillary tumors respond well to BCG.

I just tried to have the BCG done in the morning and tried to work the next day. I do remember for about 24 hours I had to know where the restroom was because I had about 20 seconds or I would lose it. Effects do seem to accumulate. I'd certainly give the 1st 6 a good effort. You'll know more by then. I do repeat above, assuming everyone is 100% on the path report that it hasn't T2 (muscle) is a big key. My 1st TURB was inconclusive as to margins thus the second TURB.

3 month cystoscopies are a normal protocol for the 1st 2 years.3rd through 4th is usually every 6 months but, I would guess your URO would do more if you requested. However, every procedure including scopes still have a possibility of problems. Same with BCG. For most, the benefits outweigh the potential problems.

I have read many studies on possibilities. For me they are just statistics. As a general rule I believe many will show a 70% of staying clear of re-occurences when one takes BCG. Who knows? Everyone is different.

Good luck and keep asking. There is usually someone around that has "experience" with this!

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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5 years 3 months ago #45285 by dman
That's great! I hope you continue to be symptom-free. The TURBT was not fun, and after three weeks I'm still having symptoms... can't imagine what it must be like to have to go through this every three months, but I guess some people do.

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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