I am so happy for you. I wish my chemo would of taken the tumor completely.
I have a similar story that I want to tell you but I think my cancer was a little bit further along then yours. I to go to Dr. Schoenberg, but my oncologist is Dr. Bajorin at Sloan Kettering in NY. I had chemo for four months pre-op (Cisplatin/Gemzar) to shrink my tumor which was 4cm to start and shrank down below 2cm after chemo. I went back to see Dr. Schoenberg after the chemo for him to do a biopsy of my bladder. He took numerous pieces and they all came back negative, but my MRI still showed something in or just outside my bladder wall. I asked if it could just be scar tissue from the tumor shrinking up and Dr. Schoenberg said that it could be. If I wanted I could have him try to get at it through my vagina and biopsy it or just go through with the neobladder. The tumor was hard to get at. My oncoligist Dr. Bajorin told me I had to go through with the operation for a 80% chance of cure. Dr. Bajorin wouldn't answer my question about it being scar tissue he just insisted I have to have the operation.(Which I was scared to death to have) It was my choice.
It was one of the hardest choices I had to make in my life. I ask Dr. Schoenberg if I was his wife or daughter what would he tell them to do? He said I would tell them to have the operation. I ask him if he could open me up and biopsy the tumor before taking my bladder and he said not because it was behind my bladder. He would have to take the bladder first to get at the tumor. Dr. Schoenberg knew how scared I was but I think he knew I mentally had to be ready for this procedure or I wouldn't do so good. So I made the choice to go through with the neobladder. Thank God I did. It ended up it still was the cancer not scar tissue. I guess the chemo killed the cancer in my bladder but it had gone into my uterus so they had to do a total hysterectomy. Thank God all my margins were clean and no lymph node involvement. If I would of waited and just watched with MRI's I don't think my out come would of been so good.
I asked my oncologist about radiation and he said I wasn't a canidate. But my tumor was blocking one of my uterers I think that was why. You might want to ask them if you take radiation will that effect what diversion you could have down the road if you need a cystectomy. I know if you do that bladder sparing protocol at Mass General with radiation and the cancer comes back you can't have a neobladder done. Just a thought. It sort of sounds like that is what they are doing for you or similar.
Good luck with radiation and keep us posted.
Ray I am so happy for you It is so hard to hear so much scary and unpleasant stuff at appointments... maybe you just need to soak up the good news a while - pinch yourself if ya have to ;D Enjoy the good news! Holly
I second the above; it's the dream result Ray. I also identify with your cautious outlook. Even with my bladder out there's a tiny part of me that keeps my optimism in check! But every piece of good news is a victory worth celebrating.
I haven't posted in a while, but everyone was so helpful to me when I was first diagnosed last September, I thought I would give an update on my ongoing condition.
Back in September, I was diagnosed with invasive bladder cancer. The tumor was removed, but because the cancer had invaded the muscle, I was told I would have to have my bladder removed. Not being married and not having any close relatives nearby, I felt I was alone in the world and I was very scared. I posted my thoughts and fears on this board and received many heartfelt responses which helped to ease my anxiety. I knew I was not alone and it was not the end of the world. Friends also rallied around me for support.
Many of the postings and many of my friends recommended that I go for a second opinion. I was lucky to have been referred to Dr. Mark Schoenberg at The Johns Hopkins Hospital. I was told he was the best and after seeing him, I realized that I was in the presence of an expert team (Dr Schoenberg, his resident Trinity, and his nurse Charlene). After reviewing my records and performing a scope, Dr Schoenberg recommended that I have chemo before the bladder removal surgery. He said this will shrink the tumor and at the same time give me time to get into better physical condition...I needed to lose about 30 pounds. I was referred to Dr Vaughn at Univ of Penn. for the Chemo treatments. I started the Chemo (Gemzar and Cisplatin) in early November and finished at the end of January. Upon completion, I had another Cat Scan and MRI which came back clear...no evidence of the cancer. I was then referred back to Dr Schoenberg who performed a scope and took a biopsy of several areas of the bladder. The pathology report came back benign! This was a totally unexpected outcome. Dr Schoenberg now recommends that instead of surgery, I have a round of radiation treatments to reinforce the good results that I received from the chemo treatments. Both Doctors say that I have made remarkable progress with the chemotherapy and just maybe I will not have to have the bladder removed.
I'm trying not celebrate too much because I know all the good news can turn to bad unexpectedly in a very short time, but right now I'm on cloud nine!!!