Newly Diagnosed w/ T1-G3 Tumor...Terrified!

Although there is considerable discussion in the literature regarding "early" rc for T1 high grade urothelial tumors, it seems that most recommend a trial of bcg first and if bcg fails (variously defined as to what a failure is) then proceed to rc without delay. That was the recommendation I had from 2 different high volume bc centers, but at 59 chose to go on with rc, a decision that I do not regret as even though my repeat turbt was not muscle invasive, my final pathology on the cystectomy specimen was muscle invasive. I think that they are more interested in this as an option for those of us who are relatively young and otherwise healthy as you are. This is a very difficult decision for you and the urologic oncologists as they cannot predict who will do well with bcg and who will ultimately need rc, anyway. Another consideration with bcg is the side effects which rarely can be quite long lasting and may require additional treatment to alleviate these problems. All that aside, it seems that most newly diagnosed T1G3 patients will begin with bcg.

jj

Steve,

Many of us here have been in your shoes at one point or another.

I'm not sure I'd be jumping to RC quite yet. That does not mean you shouldn't read up on it and go through forum threads here so that you are prepared just in case. I went two years from the time I had my first diagnosis to the time I had my recurrence. Many folks keep it at bay with BCG for years and years before (if ever) having to go the RC route.

Not sure if the urologists that your nurse friends spoke to were top bladder cancer specialists or not, but it is certainly worth discussing pros and cons with your doc.

Typically, one with Ta (IF that gets confirmed by the 2nd TURBT) go with BCG or Mitomycin instillation. Read up on Dr. Lamm's BCG protocol and research.

Hope all goes well with the 2nd TURBT. It's the right thing to do because bladder cancer is very, very often understaged at the first go around.

Mike

NOTE: WHEN I POSTED THIS I DIDN'T READ THE HEADING SO I WAS THINKING Ta, NOT T1. T1 IS A WHOLE DIFFERENT ANIMAL. SORRY FOR ANY CONFUSION.

Wow, Mike, as always you are so spot on. Thanks also for the hug for the wife. It is very scary being the loving wife of a BC patient and we are also feeling the scariness of the unknown. Life has changed in many big ways for all of us as well. But, we keep the good, happy face on for the sakes of our loved husbands/wives so they don't see our pain. I cannot tell you the times I've been in the shower and burst into tears of pain, frustration, and all the feelings that come with what I call the intruder...the b**tard cancer BC! Thanks for remmeber us as well. You are awesome as are so many on this board! Just the best!

Terrified, of course.
Information overload, you bet.
Scary, damn right. “You are going to scrape the lining of my bladder?” I could feel the pain even though it was scheduled for next week!

Think of it this way…
You have already done several things right. You have talented doctors, you have concerned and knowledgeable friends locally (RN’s), and, best of all, you are surrounding yourself with cancer survivors here. While your life might be taking a difficult turn, it is not into the dark unknown. We are here to guide, comfort, and even translate (when your Doc. seems to be talking Latin).

Now take a deep breath and give your wife a hug because she is worried too. Tell her everything is going to be all right and mean it.

Hi Steve; Sorry you have to be here, but this is one place you will find comfort and knowledge. If you have questions, someone here will have an answer to try to help. The one thing i would tell you at this stage of your journey is to study, to learn as much as you can about each stage that may arrive. Just be prepared. That way you will never have to rush into something you have not thought about. I am glad you have caught this early.
Wishing you the best.
Duke

Whew, I can feel what you are feeling Steve as we were there back last July and thought..."how can this be happening?". But happen it did and like George within one months time, Jim had a TURB + RC/IC. He had the dx of BC without a doubt and it had gone into his prostate. No prior symptoms so that isn't something new for many here. Keep in mind that you will find many caring,knowledgable people on this forum who are here to help you get through this. This forum has been a true God Send to me. Jim had his surgery last Aug 12th followed by 6 months of gem/cis chemo and as of now, to quote another forum member is "cancer free until proven otherwise". Keep up your vigilance and follow through. You will do just fine and keep coming back here to let us help you carry this sudden "bump in the road". We are feeling so good right now, we are moving forward with our move that was delayed due to BC! WE will not let BC take over our lives, we will keep vigilant and keep the tiger tamed! Take care