When I was originally dxed I was T2 G3 and my response over and above the (OH MY GOD) this may kill me was the fear of losing my bladder. I opted for a clinical trial in order to try to do bladder sparing. What followed was a year and a half of radiation, chemo, re Turb and BCG. Six months was the longest we could keep the TCC and CIS at bay the emotional and physical ups and downs almost brought me to my knees. The day came that my medical team told me it was the end of the road that the RC had to happen and I felt like I had failed. Now sitting on the other side of the fence it is clear to me that I had lost sight of what the enemy was; it was not losing my bladder it was the cancer. For some the blc happens and they do BCG or other treatment and it may reoccur or it may not but if it does more treatment keeps it at bay. But for some with high grade blc it is more aggressive and once it starts it never lets up until you stop it in its tracks with an RC. Never lose sight of this fact, no matter what our treatment paths are the bottom line is to keep the cancer from getting out of the box and our surviving.
Two and a half years find me leading a good and full life following RC it was not the worst thing that could have happened to me by a long shot. The emotional rollercoaster of constant reoccurrences is behind me thank goodness. I did all the things that we are advised to do I got a second and a third opinion. I chose a surgeon that did a high volume of the diversion I hoped to get and I chose a hospital that handles a high volume of RC patients.
I cannot advise you as to what treatment path you should chose once the pathology comes back this time. I can only advise you to seek the best treatment available and to never take your eyes off the true enemy.
Good luck and keep us updated.
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