Living with Urethral Cancer

This is a new adventure for me to be posting my “story”…however if it helps someone else in some way that would be the main purpose OR if anyone knows of more management activities I may explore would appreciate correspondence. I was diagnosed with uretheral adenocarcinoma July 9, 2007, after a sudden on-set of being unable to void and aggresive work up following that episode.

I had surgery on 08/24 of a pelvic exenteration, cystecomy and creation of a urinary contuit. At that time it was discovered that surgery had not completely irradicated this and so after recovery, I began chemo therapy treatments from October to Jan (Taxol and Gemzar), followed by daily radiation concurrent with weekly cisplatin. During those treatments I also received some neulasta and arinesp ? for some blood related conditions. Currently I am receiving monthly Zometa and B12; and in June will repeat a PET to determine the effectiveness of these treatments.

The metastasis of my cancer is alarming however we believe that I have responded effectively to the chemo based on some CTs and MRIs already completed. My entire pelvic region was involved and this has spread to my lumbar spine but the radiation has made that initial area to be sclerotic at this time; additionally there may be some involvement in my mediastinum and carotid lymph nodes. So currently it is a wait and see stage and I am tolerating the Zometa well for the compromise of my bones/lumbar spine.

I was 60 at my last birthday and actively working at the onset of this; however I have not totally adjusted to the urostomy. It is not as bad or horrific as I first had thought, and in fact is much easier to manage than I thought, but I continue to have “accidents” and continue to try different products with the assists of some very good ostomy nurses. The location of the ostomy has created an a huge adjustment as to what I can “do” or “not do” and much of that is trial and error. Twisting, turning, stretching, picking up weighty things…groceries, laundry, gallons of tea many more “normal daily activities” than we recognize immediately… all of these and others…nighttime trying to turn over in bed etc, all create new adjustments in management. I am now on disability since I cannot return to my former job, and actually I have been weakened by the treatments, but hopeful that I will re-gain some of that soon.

One reason for my post is that beyond this stage, I do not know what to expect …. I have discussed this with my physician who says that this is not thought to be “curable” but may be a condition of “remission” and I am not certain I understand that concept….would say that it is not a candidate for the “cancer free” term ever due to the metastasis. Now I am at the point of trying to think ahead but I am not able to figure out “what” that is… return to work also not in the picture right now because I am so weak etc. However I am hoping we do not “see” any of this on the PET in June, and with some strength may be able to do something kind of work down the road.

I would appreciate any thoughts or comments about this kind of treatment plan and or prognosis. Thank You.