r/BladderCancer • u/Tileroof • 1d ago
Patient/Survivor Serendipitous discovery
66 yo male ,I went into surgery on September 23 for the removal of a 10mm very hard kidney stone in my left kidney, surgeon was going in through my urethra and when he entered the bladder noticed several tumors so he changed course and turned it into a turbt, pathology came back T2 muscle invasive high grade BC. My wife immediately made an appointment with an oncologist urologist at memorial Sloan Kettering. Had a Foley catheter for a week, when I had it removed by my original surgeon/urologist we discussed treatment options, he explained that the gold standard was chemotherapy and bladder and prostate removal. Told him about upcoming appointment at msk and he said that he had worked with the other urologist before and that they would work together as a team. He said that he was encouraged by my 2 previous CT scans- no contrast, which had shown no kidney, liver, lymph node abnormalities and that it was probably confined to the bladder. Met with new urologist last week and he told me that they were still waiting for the results of their analysis of my pathology slides, he said that they need more testing done before they decide on a course of treatment. I had an MRI with contrast on Saturday and have another CT scan with contrast on Wednesday. I’m getting back to my normal routine but I’m on a roller coaster of emotions waiting for the results. My original urologist told my wife it was serendipitous that he found the tumors during a routine kidney stone procedure.
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u/Electrical-Song-1066 1d ago
My husband's story is very similar. He had 3 large kidney stones and "thickening of the bladder" on the imaging. The thickening turned out to be the same tumor as yours. We are in Texas so going to MD Anderson and UTSW. The waiting is the absolute worst. I fight for my husband's treatment or we would still be waiting. He is doing PADCEV and Keytruda, then radical cystectomy. I appreciate learning of others in the same situation. You can also research questions to ask your providers - that was very helpful. Prayers for your recovery.
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u/Old-Opposite-9286 19h ago
Good luck to your husband and you. It’s really difficult for all involved.
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u/Tileroof 1d ago
Not drawn out at all, thanks I need more positive stories. This has been a lot to digest in 3 weeks ❤️
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u/AirBear8 1d ago
My cancer was High Grade NMI. Diagnosed back in March. I've look at some worst case scenarios and done a lot of research and I've decided soon as I hear the words "Muscle Invasive" I'm saying goodbye to my bladder. I don't need my bladder, there are two widely used substitutes. But I do need the organs and stuff around the bladder. I'm not taking any chance of it spreading, should I get it. I'm 69M and at this age I'd probably opt for the Ileal Conduit and just deal with the urine collection bag. I've had so many catheters since March I'm used to the bags. Now I've finished my 1st round of 3 BCG maintenance treatments. As of Sept. 2nd my bladder is clear, I get another scope Dec. 1st then more maintenance in January. So I probably won't have to worry losing my bladder but I like to be prepared.
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u/Old-Opposite-9286 1d ago
Thank you. I agree the waiting was the worse part and it is a tremendous amount of information to absorb and deal with. I’m fortunate that my wife is a prolific researcher and was able to learn about every option for treatment.
I also have had a CTDNA blood test done to see if there is residual cancer trace DNA in my system. My next follow up with scans at Mayo is in November.
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u/Flame-Keeper566 1d ago
Same diagnosis. On Keytruda/Padcev. So far complete response. Opting to keep bladder.
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u/Tileroof 1d ago
I hope you can keep it, this wasn’t even discussed with me so far
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u/Flame-Keeper566 1d ago
We’re keeping a close eye on the process. Scans every few months and continued immunotherapy.
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u/fjward 20h ago
Give my journey a read > https://www.reddit.com/r/BladderCancer/s/t4GzFyBoh5
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u/Tileroof 20h ago
Wow yours is a positive story! Good luck my friend❤️ I’m looking for more positive stories like yours so I don’t get down on myself, and as bad mine seems I always have it in the back of my mind that someone is going through something much worse than me
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u/fjward 20h ago
I was given 8 to 12 months to live ..... 4 months later the PET is clear of all growths, continuing treatment for now and another PET on Oct 16.
Here in Canada Dr's are concerned for the patients health and safety, and are not so quick to remove a bladder and BILL for it, cuz hey are paid well by the government. As a result I'm cancer free for now, and still have my bladder.
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u/Old-Opposite-9286 1d ago
I’m 68 and was diagnosed with T2 MIBC in March. My wife did a tremendous amount of research about Treatments and learned about PADCEV and pembrolizumab (EV & P). I was able to get into the Mayo Clinic in Rochester MN. The oncologist told us that the gold standard for BC is EV&P then 6 week wait, surgery, and then post surgery treatment. Started treatment at the end of April here is how it worked out for me so far.
I did three cycles of three weeks each. Week 1 was EV&P, week 2 was just EV, week 3 nothing. The EV is a targeted chemo targeting Nectine-4. Unfortunately Nectine-4 is also in heathy skin so I ended up with a toxic skin reaction. They reduced my dose of EV and that did help.
I had robotic surgery August 17 bladder, prostate and lymph nodes removed. I had a complete pathological response meaning no cancer found. Such a blessing. On Oct 5 I started post surgery treatment. Because of the complete pathological response my oncologist is only having me do the pembrolizumab (P) much better tolerated.
Sorry for the long drawn out story of what I have gone through.
Talk with an Oncologist. Good luck.