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Recent neobladder 1st Chemo

13 years 5 months ago #4634 by Rosemary
Dear Dan,

Thanks for sharing your story with us. I can actually feel your strength through the words of your post.

I am wishing you the best on your road to healing and recovery. I have not yet been faced with RC, but there is no way for us to know what is ahead of us on this road.

Your story is welcome here and I hope you will continue to keep us posted.

I probably won't comment a lot here in your thread as I do not have the experience to offer you help or advice, but please know that I read every word here, and I will be keeping up with you

Your BC friend,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 5 months ago #4628 by Mike
Thank you for sharing your experience. You have such a positive attitude about all of this. I believe that makes a lot of difference.

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13 years 5 months ago #4626 by danpeters
This is my first posting at this site, having visited fairly often over the past few months.  The posting is a bit of a cathartic release for me and maybe someone can take something from this that will help them or perhaps someone will ask me a question that will help both of us.  Yesterday was my first chemo treatment, 12 hours of IV fluids and anti nausea meds interrupted by a dose of Gemcitabine followed by a dose of Cisplatinum.  One down 5 to go.  Any comments on your experiences with these drugs are appreciated.

On January 26, 2007, without a lot of, but sufficient research - including paging through this site - I had my bladder removed and replaced by a neobladder.  The journey started about 2 months earlier, the way I gather it starts for many, intermittent visible traces of blood in my urine sends me to my local urologist, we think it's a kidney stone because I also have some tenderness in my lower back.  A few weeks go by as I schedule and have the various scopes and scans and by early December I learn we were half right.  I have a kidney stone in my right kidney, but the urologist says that is not a priority concern.  In addition to the kidney stone, I have, he says, a "good size" growth in my bladder that is blocking my left kidney from draining into my bladder.  He recommends that I see a surgeon at New York Presbyterian-Columbia University Hospital.  On January 3rd with little fanfare and one overnight Dr. James McKiernan performs a biopsy and a few days later the results confirm what the CT Scan suggested. A malignancy that is invasive of the muscle wall, blocking drainage from the left kidney.  (For anyone considering uro-oncological surgery in the New York area I highly recommend having a consult with Dr. James McKiernan as part of your decision making process.)  

The choice of chemo or surgery first was driven by my prior history of surviving (now 35 years) Hodgkin's Disease (a malignant lymphoma).  The radiation used in treating me in the early 1970's according to the various oncologists I have worked with over the years has probably compromised my bone marrow's ability to grow new red blood cells plus my spleen was removed in the course of treating the Hodgkin's and then there was that kidney stone that may not stay quiet during the chemo. In short, we all felt I'd recover faster from the surgery than the chemo and on the odd chance that there was no spread outside of the bladder once the tumor and bladder were removed I might not need chemo.  

Return to 1.26.07.  The surgeon and the entire staff were terrific, patient, confident but not arrogant.  I had absolutely no post surgical pain.  Discomfort - yes, fatigue - yes, catheter annoyance - yes; but no surgical pain.  In the weeks between the biopsy and surgery I received quite a few phone calls from the surgeon to see how I was doing, physically and emotionally, and to review the surgical procedure (yes Dr. McKiernan called me before I called him). From the onset my wife and I had decided we would treat this in the most aggressive fashion advisable, just as we had done with the Hodgkin's. If it meant an external pouch so be it.  The surgeon was guardedly optimistic that he could create the neobladder unless there was too much scar tissue in my intestine from the earlier radiation.  The night before the surgery he spent time with my wife and me until we ran out of questions and he had explained exactly where and how the external pouch would be placed if he could not complete the neobladder.  

The pathology reports following surgery were summarized as T2/N2, T2 because the tumor had invaded the muscle wall but not beyond into the fatty tissue surrounding the bladder, N2 because 3 of the 14 nodes in the area outside the bladder were malignant.  The tumor is further described as “high grade” – not the kind of grade you want to be high.  The tumor had not invaded the kidney, nor had it entered the drain from the kidney to the bladder.  There was no cancer in my prostate.  The research says I have an 80% chance of reoccurrence without chemo and a 50% chance with chemo.  I have always been fascinated by those cases that defied the research on the positive outcome side and also find some comfort in a 5 in 10 chance instead of a 2 in 10 chance.  With my Hodgkin’s I was told 5 years of remission was the important milestone with regards to long term survival.  I’ve heard from patients and oncologists that with this type of bladder cancer 2 years is an important milestone.  So as not to disrupt my positive thinking, for the time being it is sufficient for me to know - without knowing all the details - that if this doesn’t work there are options and each year those options become better defined by medical researchers

Thanks for providing the opportunity to ramble on about my experience with an insidious disease that with the help of others is more readily overcome.

Oh - a little context.  I am a soon to be 59 year old male, never smoked - drank only on occasion and then in moderation (if you can eliminate the reckless college years).  I have worked all my life in public education, first as a school psychologist and currently as a superintendent of schools.  Other than the Hodgkin's and my current illness I rarely if ever missed a day of work and was in good health and physical fitness going into this bout.  I have likened this experience thus far to a 15 round heavy weight fight.  I know it's early in the bout and my opponent has had me on the ropes a few times.  But in my heart I know this will go the full 15 rounds, there will be no knockouts and in the end the judges will decide the winner, which I fully expect to be me.

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