Hi Bubbles;
This is my first time back to the forum in about a month. I am also a wife of a newly diagnosed hubby (54 y.o. with a 6.5 cm tumor; could not pee, lots of blood, had symptoms for 3 years and was misinformed by his Doc on what it might be; ended up with a Stage 1 High Grade papillary tumor and has just finished his first 6 weeks of BCG; next cysto will be 12/12/06). He is feeling good and hopes for the good news of non-reoccurence in December. But also knows this will be something he will always have to be vigilant in monitoring and maintenance regimes the rest of his long life.
This site was my salvation when I was so fearful that I could not sleep. I saw bears in the woods daily and was sure the docs might have missed something. But all is well for now, so let me offer some addtional information.
O.K. here we go, Wendy will tell me if I am off on anything:
Your hubby will undergo a TURBT (transurethral resection of the bladder tumor). The pros should consider doing a "bladder mapping" (otherwise known as a random biopsy) when they are in there cutting out the tumor. The mapping helps them see that there are no other smaller lesions elsewhere and that they can say they know what the bladder looks like now.
After the TURBT ask for a FISH Cytology test (more accrurate by far that a regular cytology test). That will give the Uro Team a chance to see that no more cancer cells are being sluffed from the walls after the original tumor was taken out.
The coral reef shaping that your eyes saw might be a papillary tumor. Docs often describe is as a cauliflower like outgrowth. The good news about Paillary type tumors is that they grow more into the baldder space and have a relatively small attachment to the lining wall as opposed to the CIS type that grow wide across the baldder lining and tend to invade the muscle layer sometimes faster than papillary types.
Make that the Pathology reports from the tumor removal show that a piece of muscle is also taken at the site of the tumor. To stage it correctly, one needs a piece of lining, the connective tissue layer and the muscle layer. Go to the following page for more info on staging and grading:
blcwebcafe.org/staging.asp
You said that the Prostate is enlarged. They can see it visually when they do the TURBT. They may even want to do a PSA as a pre-op test to see if it is elevated. They could possibly biopsy it if indicated by an elevated PSA while they are in there for the TURBT. He is abit young for prostate enlargement. Depending upon his family history it may be something to be concerned about or not.
You have not mentioned where your doctors are from and if you have gotten a second opinion. Please try hard to connect in with a major cancer center that has a well known Uro-oncology group that do a lot of work with bladder and prostate health issues. They will be the most effective tool in your fight. Best time to get a second opnion is after the TURBT and before the next step (but don't delay treatments or surgery too long after TURBT). Seek out a Pro that will get you on schedule for a second opinion about a week or two after the TURBT when you have the Path report back and know the Stage and Grade.
Our doctors at UCSF use Dr. Donald Lamm's protocol for BCG post TURBT for non-muscle invading tumors. You can read about Lamm's work also on the baldder cancer web cafe site. Maintenance therapy to keep the little pest gone after the initial removal is as important as the first 6 week treatment regime.
Whether you use only BCG or BCG with a chemotherapy drug will be up to you and the doctors, if that is the planned treatment choice.
Once you have the stage and grade you will then need to make the next set of decisions. If it has not invaded the muscle wall of the bladder then most centers will suggest the BCG protocol. If muscle is involved then more agressive treatments will be suggested (radiation and chemo or cystectomy).
I am a worry wart about where else could it be from a metastatic issue. The folks on this site and your Docs will tell you first things first. Get the Bladder Cancer on the run and depending upon its stage and grade they will then decide if you need to do more scans or blood work to check out the other areas of the abdomen or rest of the body.
This is a journey, one that you two will face head on with lots of good support systems. Family, friends and professionals. We even went to see a nutirtionist to make sure my husband is on the right diet and suppliments that the specialized cancer nutritionist and our docs agree upon.
If you need some names for second opinions this forum will also help you. Tell us where you live and we can give you some suggestions.
Last but not least, know that he can beat this thing and that the therapies are not too hard to take.
You are in my thoughts and prayers,
Deb