Hello everyone... I just found this site today as I was doing my usual morning scan for anything new on bladder cancer. My adventure began this past January 4th when my ob/gyn found a mass in my bladder during an ultrasound at age 55. Fortunately it was fairly small (1.6 cm) and I had it removed via TURBT on 1/21. It took a week for the pathology to come back and I went back to review the results on 1/28. Just as my doctor had explained on my initial visit, 95% of bladder tumors were transitional cell and many of them are benign... but, he said, mine was not one of those. It was a rare tumor in the bladder, less than 2% of all tumors, and was primary invasive adenocarcinoma. It was invasive to at least the inner lining, but inconclusive as to invasion into the muscle wall. He said he might see one every 10 years in his practice and referred me to Vanderbilt since it was the closest large hospital to my home. My appointment in Nashville was scheduled for 2/4.
Driving home I was just numb, like so many of you have described at hearing your name and "cancer" in the same sentence. I was so shocked since I had never even had a UTI, have always maintained a relatively healthy lifestyle of diet and exercise, a urinary issue was the farthest thing from my mind. I began to read everything I could find on the internet about bladder cancer and often the treatment of choice was radical cystectomy. There is so little information on adenocarinomas except to say how rare it is and its poor prognosis. So for two weeks, I went between the extremes of stressing about that possible outcome to a calmness that said don't worry until I know what I'm dealing with.
My appointment day finally arrived on 2/4 (5 hour drive to Nashville) and I met with my recommended oncologist/ surgeon. After looking at my CT scan, he said due to the location at the dome, he could do a partial cystectomy at the tumor site to ensure the tumor had been completely removed. Needless to say, I was very relieved to hear that my bladder would be spared.
My surgery was on 2/25 which was Thursday. I'm a pretty small person and had a 5.5 inch incision from just below the belly button to the pubic bone. The surgery went fine and I went home Sunday with a catheter for the next 3 1/2 weeks until I returned for a follow up. The catheter was a nuisance, but I was so grateful to have it because it meant I still had a bladder.
The Vanderbilt nurse called on Tuesday after I got home to tell me that the pathology had come back and the margins were negative for cancer. I was barely able to eek out a "thank you" because I was crying so hard. I guess holding in all that emotion for so long had to break sometime. When I went back to have the catheter removed, the doctor went over my pathology report in detail with me and there was a tiny bit of tumor in the wall section he removed so the TURB had not been able to go that deeply. The final staging was T2a. He took two margins around it which were both clean, plus 3 lymph nodes, and tissue from the removed urachus showed no cancer. (I had never heard of "urachus" until all this started).
I healed quickly over a six week period. I have had two cystocopies at 3 month intervals which looked great. My next one is 11/22 plus a CT scan. I know I have had the best possible outcome given the circumstances. My ob/gyn was so persistent and would not give up looking for the source of a tiny bit of bleeding I told her about. I just thought it was a little post-menopausal bleeding, but she kept me there 3 hours while she kept checking different things. I am so grateful for her caring attention.
My question (if you're still reading this long post) is whether there is a time when you ever stop feeling like a dark cloud is over your head waiting for this cancer to return. It seems that BC has such a high recurrence rate that it's hard to breath easy. There is so little information out there on adenocarcinomas that I feel alone in this journey. My background as an engineer makes me want to troubleshoot and find the problem that caused it, then fix it. That doesn't work for cancer as no one can pinpoint what causes it.
I told my doctor that I had two important questions based on internet rumors: 1) can I still drink coffee... he said "yes", and 2) can I still color my hair... he said "yes". Neither are proven causative when used sparingly.
Neverless, I have quit using most of my cosmetics/lotions and have greatly reduced any processed foods I eat. I think about it every time I go to the bathroom, start to apply anything to my body (soap, shampoo, lotion, etc.), or eat food from the store, and I know I am obsessing in a very unhealthy way.
Any advice you can offer will be greatly appreciated. I know how remarkably lucky I am at this point and I try to see that side of the coin on a daily basis. Your stories and posts have been very helpful, so thank you for sharing your thoughts here for anyone who needs to hear them. Today that was me...
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