See the chapter, "Healing vs. Curing". It meant a lot to me and has helped me again and again when dealing with loved ones having incurable cancer, as well as when I was diagnosed with advanced breast cancer (still here after 7 yrs).
It's a very hard situation, my thoughts are with you and your husband.
Thanks so much for your reassurance and remembering my case history of never having CIS. Jeanette, I didn't mean to ignore your posts about your husband by my concern post for this needed clarification for myself and others. My heart goes out to you and your beloved husband. Remember, there are many surprises and remissions in cancer. There doesn't seem to be any "normal" progression nor any concrete prognosis when one has metacticised. I know the pronunciation of CANCER, is frightening and even more so when more than one part of the body contains cancer. It seems like a death sentence but consider a well known metasticised case in Lance Armstrong. He had testicular cancer that had spread to his brain and liver. Those are two areas that are normally considered a death sentence, yet he is now cancer free. With the love and involvement you have displayed in your posts, he has a tremendous advocate in his favor that makes a great team for healing. The book, tape or CD entitled Love, Medicine and Miracles by Dr. Bernie Siegel has been a great help to me and many others with cancer.
thanks for the response. my husband has had 3weeks of radiation and it helped ease the pain a great deal. he is now getting cycles of chemotherapy.. he just completed his 1st cycle(cycle is suppose to be a month). ,1st week cisplatin and gemzar 2nd and 3rd week just gemzar and 4th week off, unfortunately he feels the pain is starting to come back. my husband hasnt had bcg treatments for 2yrs he did have 2 rounds of bcg at the very beginning(3yrs ago) and has been going for check ups every 3 months for the last 2yrs and has been told his bladder was clean..what bothers me is the doctors never did any MRI's Cat Scan or Bone scans til recently.. any suggestions on how to keep his spirits up?
I was referring to CIS/carcinoma in situ, different from papillaries and mostly found along with high grade papillary tumors. You've never had CIS or high grade tumors, so no, I don't think you need to worry.
Sometimes CIS is invisible and only random biopsies will find it. Random biopsies are invasive and the payload is not all that big either (high morbidity, not much benefit).
I quote: 'Approved in Europe, PhotoCure ASA's multicenter European phase III study reported that Hexvix® fluorescence cystoscopy identifies approximately 30% more patients with the aggressive form of superificial bladder cancer (carcinoma in situ) compared to standard cystoscopy. "
This approach is on the verge of getting FDA approval, is widely used in Europe. I hope it becomes standard all over ASAP as it can relieve a lot of guess work.
Recently. while attending an AUA meeting on bladder cancer, heard a caution from a urologist about my doing watchful waiting of a microscopic papillary recurrent growth. He did not agree with "watchful waiting" and said "we have to see what's underneath." You just stated: "Sometimes the cancer is undetectable, spread beneath the bladder lining and can be invisible until it's too big to treat with bladder-sparing approaches." There was no reference to this in either long term trials that did watchful waiting on recurrent papillary tumors. Is it possible something could be "underneath" this papillary recurrent growth and my urologist and I have no clue? How is it found "underneath" It concerns me. Should I be worried?
Please don't blame yourself! And even the best doctors can be caught like this when dealing with bladder cancer. Most people who receive BCG do well with it and can postpone surgery for many years. Sometimes the cancer is undetectable, spread beneath the bladder lining and can be invisible until it's too big to treat with bladder-sparing approaches. It's not often we hear of things going so wrong, but unfortunately your husband wouldn't be the first young man I've met who experienced spread while on BCG.
What kind of chemo is your husband getting? Radiation can also be used to shrink bone tumors and help pain.
I moved your post from 'newly diagnosed' to this section on metastatic blc, hoping it will get more views (and replies) from people in similar circumstances.