Bad Feeling

17 years 2 months ago #1314 by rentanag
Replied by rentanag on topic Bad Feeling

I learned on 12/29/03 I had bladder cancer and on 1/15/04 I learned it was a deep muscle invasive fast growing cancer and I had my surgery on 2/17/04.  It had not advanced any further in the bladder, and there were no cancer cells in any other organ they tested including the enlarged lymph nodes they removed at the time (that the oncologist was sure were involved with my cancer).  It is now 2 1/2 years since my surgery and I am still cancer free.
I told you all of that so these doctors don't scare you into moving too fast, that is, so fast that it causes you to have doubts about the way this whole thing is progressing.  You need to feel comfortable with your doctors, including your surgeon and or your oncologist.  There are several options for you to look at and it takes time for a patient to be able to understand their disease and the options available for them to proceed with regard to their treatment.
It is not wrong of you to ask for a second opinion (or even a third or fourth if necessary), and a second opinion should come from a doctor who is not associated in any way with the doctors who are giving you their opinions right now concerning having surgery right away, and the same goes for an oncologist.  Ask questions until you feel comfortable with the answers, but now I'm going to write that that should be within reason. You can't take months to decide this, but weeks is probably not going to change your diagnosis and/or prognosis.
Hopefully if you read more on this site you will find similar information to what I've written, and there will probably be others to post here as well giving information of the same general nature.
Take some deep breaths to help relieve your stress level and then sit back and read some more, and tomorrow check into getting a second opinion (but remember the specifics about getting an unbiased opinion).  Good luck, and let us know how things go the next few days and beyond.

Lou Graham

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17 years 2 months ago #1312 by cta7978
Replied by cta7978 on topic Bad Feeling

What was your pathology?  What types of urinary diversions are they talking to you about?  Indiana pouch is just one type of internal content pouch, there are several others (Koch?) that may be more appropriate.  I think they are all roughly the same thing with minor design changes.

So, if I were in your shoes I'd go for an internal pouch or a neobladder.  The external bag does not sound too appealing to me.  But if you do get an ileal conduit, they may be able to go in after the fact and build you an internal pouch?  I'm not sure, you should ask these questions to your doctor.

What are you docs telling you they are going to do? Your a young guy too, you need to be asking about sparing the prostate nerves (nerve sparing), if they cut them out your not going to be able to get a natural erection afterwards... Start getting aggressive with these docs and figure out just what their plan is.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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17 years 2 months ago #1311 by skypilot
Replied by skypilot on topic Bad Feeling
If you have t-2, I would say that you should get it out. but if it is t-1 maybe you can get second opinion my uro wanted mine out in june. I have for sveral reasons had to wait. I just had a turb doen and i am still a t-1 same as fe and may. But I did have 6 bcg treatments and anlo I am taking natural heralistic pills and Isaic tea. Don

Hanging in there!

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17 years 2 months ago #1309 by seabay51
Bad Feeling was created by seabay51
To all,
On Sept 8th 06 last Friday I returned to my urologist for a pre surgery consultation. I told him I was considering the Indiana pouch. He admittedly shot the procedure down saying it was a procedure that was not commonly  performed any more. I was told that one of the two surgeons that would be working on me use to do Indiana pouches and now doesn’t do them and the other surgeon won’t do it due to the amount of compilations after surgery.  My surgery date is scheduled for Friday the 22nd of this month. ( an RC )
They have already bumped up my surgery once already saying that five weeks out would have been to long and that the bladder needed to be removed as the cancer is  aggressive and invasive and has already gone through two layers of the bladder.
I can’t help but feel I am being moved along here a bit to quickly and I am wondering if perhaps I have a cut happy doctor. But at the same time I feel if I delay this there is the possibility of the cancer making it through the bladder walls. Have any of you experienced this feeling about your surgeon or am I being paranoid. Yes I am very nervous about this sugery.

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