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Newly diagnosed, T1 bladder cancer, presenting as invisible - cystectomy or BCG - help!

Hello everyone this is my first post. I've had a stressful few months. Two major surgeries for colon cancer, in theory cancer free... then two weeks later I was diagnosed with high grade T1 bladder cancer, CIS and multifocal. It feels unreal.

The doctors are leaving treatment options up to me. NCCN guidelines prefer BCG but do list cystectomy as an option. The problem is that it took a very long time to get diagnosed with bladder cancer as my cancer did not present visually. I have had intense bladder/ urinary pain for 18 months. White light cystoscopy did not show anything visuall but biopsies came back suspicious of cancer. They then went to blue light which in theory should light up cancerous areas but for me that did not happen. Surgeon took 12 random biopsies which is how I ended up with the current diagnosis of T1 and it does not appear to have invaded the muscle layer (but has invaded lamina propria.

I am talking to five different doctors about whether I should purse BCG or go straight to radical cystectomy. The reason I am leaning away from BCG is twofold:

1. since they can't see my cancer it will be very difficult to track improvement or recurrence.
2. according to this study those who had early radical cystectomy had a 71% five year survival rate whereas those who did BCG had a 52% five year survival rate.

If I do pursue the cystectomy I will not be able to go through with the adjuvant cheo (xeloda) for colon cancer, but losing that opton does not stress me out because the colon cancer chemo only increased survival rate by 3% over five years. Monitoring alone for my stage 2b colon cancer has me at 76% over five year which is pretty good odds.

I am 48 years old, active runner/ hiker/ kayaker with kids and want to optimize my chances of staying alive. But I admit the cystectomy scares the sh!#t out of me.

Any advice/ thoughts would be greatly appreciated. Has anyone here had a similar diagnosis with high grade T1 presenting as flat/ invisible (aka no visible tumors but the cancer is there...)

Many thanks in advance!


  1. @rossiv - Welcome to the group. We are here to help support you through this challenge. I personally was treated for UTI's for 8 months, had no blood in my urine or other clear symptoms of bladder cancer. Finally bladder spasms sent me to the local ER for evaluation. I was also diagnosed with stage 1 and I chose to go right to RC/IC literally 5 weeks later. This was 7 years ago and I am still kicking and considered cancer free. I chose RC because I am not a gambler and plan to be around for many more years. I also did not want to have constant tests that might show progression of my cancer. BCG is certainly and option but as with life in general, nothing is a guarantee. I was told that if I tried BCG and it worked I would continue with that but if it did not, I could be at a stage further along. Personally I would not change anything. Granted I was 63 with grandchildren and much older than you. At 70 years young I am still very active, work part time etc etc. Take a breath, review your options carefully and get with your medical team to see what they really suggest you do. In the end, the choice is yours and yours alone. I have an active full life and would be back running if I did not have a bionic hip. There is a great deal of info out there but do what is best for you and your family. Also do not over research as along with the good, comes the bad and ugly. I also would suggest speaking to others who have had to make the choice. Meeting and/or speaking with others can be a real blessing during times like this. My best to you. Linda ( moderator, " team member)

    1. @rossiv thanks for sharing! MAN! You've been through a lot! Treatment options are definitely an individualized decision. I was diagnosed at Stage 3B with a T4 tumor, so cystectomy or die were pretty much my options due to how my tumor had progressed. I'm not sure what I would have chosen if I were in your shoes. Honestly, I'm kind of surprised that cystectomy was brought up already.

      That being said, I live with a urostomy/ileal conduit and am thoroughly satisfied with the type of diversion I chose. I was diagnosed at 40 and am now 45 and living life mostly as I want to the living it. (and working towards improvements!) RC does have quite an impact on your core strength, so you will gradually need to work on that to regain it and MAY not be quite as independent immediately with all of your hobbies mentioned, but you will eventually get back to that point with some work.

      Has anyone talked to you about getting tested for Lynch Syndrome? Lynch Syndrome is a cancer syndrome that makes people genetically predisposed to several types of cancer. Colon and bladder being among them! I was tested at the advice of my docs after being diagnosed with bladder cancer at such a young age. I would definitely recommend pursuing it since you have already presented with 2 cancers by 48....even if it is only conversations with your doctors.

      1. I had T2 and chose chemo/radiation. Keeping my bladder was important to me. So far I am cancer free though it’s only been a year. Tough cancer with tough options and decisions. Best of your decision!

        1. thank you....and thanks for all you do for us on this site

        2. @siri - agreed. Your decisions are yours and yours alone. We are the ones who live with the outcomes of our choices regardless of the direction they take us. Good luck to you. Linda ( moderator, team member)

      2. - would love to hear where things are with you, what choices you have made and where we can support you. Hope all is well and that you are receiving answers that will help make choices easier. My best to you. Linda (moderator, team member)

        1. I was also diagnosed with T1 high grade bladder cancer and my first Turbt surgery report said it was in the muscle, but then there was no muscle tissue in that biopsy. So I had another elsewhere which did not find cancer in the muscle. This was in 2014. I was fortunate to be able to see Dr Donald Lamm (which I recommend you do if possible) who started me on BCG. 7 yrs later I am still cancer free. I am about to have a set of prophylactic bcg treatments after 3 yrs without treatments, only cystoscopies and a couple of FISH tests. My original tumor was very large, main tumor was 5+ cm with a 12 cm tumor bed.
          I just want to give you a perspective from someone who has not had a cystectomy. I have not had any severe side effects from the many bcg treatments i have had. If you are thinking of pursuing this route i highly recommend you see Dr Lamm. He is the BCG guru, having done the original studies and testing of bcg resulting in its approval by the FDA long ago. He is in Phoenix.

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