Just diagnosed with high grade Stage 1 (maybe 2?) Bladder Cancer -- Trying to decide between conservative and aggresive treatment
Imaging a couple of months ago found a 2.5cm mass in my bladder which turned out to be a papillar tumor , and the pathology from my TURBT a week and a half ago indicated that it was invasive high grade (grade 3, with a proliferation index of 70%!) urothelial carcinoma. Unfortunately, the surgeon didn't go deep enough to get any muscle cells in the sample, but it did show invasion of the Lamina Propria, so it is definitely stage 1, and possibly stage 2.
Doc is treating it as high-grade stage 1, and is recommending that I repeat the TURBT in a few weeks, and provided that the next sample either is clean or confirms Stage 1, that we follow up that second surgery with immunotherapy (6 weekly infusions of partially active TB virus into my bladder to stimulate an immune response that will fight the cancer in my bladder. This was his recommendation over the phone when he gave me this news last week. I've got an appointment in a couple of days to have a more in-depth discussion with him.
My concern is that in an effort to save my bladder he may be taking too conservative of an approach in presuming that I've got Stage 1 rather than Stage 2 cancer. As aggressive as this appears to be -- plus the fact that I'm a Type-2 diabetic struggling with my blood sugar and a urine sample taken before the surgery showed a glucose level >500mg/dl in my urine -- I'm really fearful that I've actually got stage 2 cancer, for which the treatment would be to remove either part or all of my bladder.
I'm afraid that we'll find out after the second TURBT that it is actually stage 2, and then we'll have to schedule another surgery to remove my bladder and in that surgery we'll find that it has spread outside the bladder.
What makes the decision even more difficult is that I read an NIH study that stated that if you are remove the bladder before the cancer spreads outside it, that the 5 year mortality jumps up to about 95%. That same article says that there's a longstanding conflict within the urological community about whether aggressive treatment (taking the bladder) vs conservative treatment (which is what is being recommended to me) is more appropriate for high-grade invasive bladder cancer.
And then there's just the plain fact that this is all scary as hell. I lost my wife 2.5 years ago to glioblastoma in her brain stem (discovered it the first week of the COVID lockdown, she passed 13 months later), so its really rough facing this alone. I have an 18-yo son who is AWESOME, but I'm trying not to lean on him for emotional support too much as he's only now starting to thrive again after losing his mom.
So I'm interested in any thoughts or support or success (or even not success) stories people in similar situations might have. Thanks in advance for any responses!
Hi
thank you for being so open and honest with us. I am so sorry for the loss of your wife, I can't even imagine how difficult this must be. I am so happy you have such an amazing son, I am glad to hear he is starting to thrive again. I am sure this has been so incredibly hard. I am happy you found our community. I hope you know you are not alone and you have our full support. I really hope our members respond here with their personal experiences. I can imagine you are feeling all of the emotions that come with this, the fear, confusion and just how overwhelming it must be. It is good that you have a follow up appointment with your doctor to go over more details in a couple days. I am sure that you are, but I would definitely share all of these concerns with them. If you still do not feel comfortable, I know our members will say they had to get another opinion(s). I am sending over an article that I hope can help if you do decide to seek out another opinion: https://bladdercancer.net/living/getting-second-opinion. And, here is an article that has links to many good support groups: https://bladdercancer.net/coping/resources-support-2. I know you mentioned you didn't want to be a burden on your son, but I am sure he will want to be there for you along this journey. Jill, bladdercancer.net team Thank you! Honestly, I’m trying to figure out if/how to take it one step further and seek to have another urologist do the second TURBT, given that this doc didn’t get a complete sample and has left my cancer essentially unstaged.
I am looking forward to finding community here!
Welcome to this supportive group. I was diagnosed with stage one high grade transitional bladder cancer in August 2014. Long story short, there were a lot of challenges going on in my life at that time so I spoke to people on various sites and looked closely at my options. 9/30/2014 I had my bladder removed along with other parts. I am over 9 years cancer free and wear a bag. I returned to work at a new job 10/27/14 and my life went on just fine. I chose to not "try" BCG because personally I did not like the odds and decided that it was best to rid myself of a diseased bladder versus hoping that things would work for years to come. I had no interest in saving my bladder - maybe. My bladder did not like me and so I got rid of it. I am a very active nearly 73 year old and very involved in the bladder cancer community supporting others. My choice was mine alone and I would not have done anything differently. My bag does not impact my life because I chose 9 years ago to have a positive attitude and not allow it to change me. I am grateful for this second chance at a full life and I have moved on just fine - bag included.. Since that day of surgery I have traveled to many places around this world, ziplined in the US and Costa Rica, competed in my first triathlon etc etc. I have also retired 3 times - my final time 6/20/23. My choice, my life. May you make the best decision for you. My best Linda 
hi Linda I hope you are well, I have a good friend diagnosed yesterday with bladder cancer which is aggressive, he is young. Advised to have bladder removal. Is there any way I can contact you. Thx 🙏🏼 Angela
Thank you so much for your reply, Linda. A big part of me feels the same way you did. I'm meeting with my urologist tomorrow to discuss things. I initially tentatively agreed with his recommendation to treat this as Stage I disease until proven otherwise, but there is also a big part of me that wants to decisively end this and get on with the rest of my life with substantially reduced worry. I'm still not sure whether I'll change my mind during tomorrow's conversation, but it's a possibility.
Hi, I am wondering what decision you made for the bladder cancer. I have the same situation as you, but I did 2 turbt and 6 weeks of BCG treatments and still have cancer. I am scheduled to do a third turbt, but the pain and stress of worrying about it all the time is driving me crazy. I have a call with Dr tonight about if this is something I really want to do or go for a radical cystectomy.I hope you're doing well and would like to know how you are doing.
Sorry that you are having to go through this. I was diagnosed with TA high grade in February of this year. I think you are spot on with your understanding of the T1 dilemma - under treating with BCG vs over treating with removing the entire bladder. I have heard from urologists that they have to be careful when getting the TURBT sample. Risk of bladder perforation complications if they go too deep vs incomplete staging if they don't get enough muscle in the sample. Hopefully you will have muscle in the 2nd TURBT so you will have better staging from pathology. Wishing you the best!
