I been on this forum before but it has been awhile as I been busy trying to move on with my life as at the time I was in remission or so I thought but this past March I had a scope done and my urologist found a red patch and believed that it was CIS but he said let's watch until the urine test comes back but I said there were times in the past that test was negative and I still had cancer. My urologist said he he pretty sure that the test will come back positive, well a few days later and he called me and said the urine test came back negative and now he said he was convinced that the red patch in my bladder was just irritation from the BCG that I had, but he said to be sure we will do a biopsy, of course that was delayed because of COVID-19 but then my area went into the yellow phase and I was able to have my biopsy done in June 9th, 2020. Well two days later June 11th, 2020 my urologist called me and he said that my cancer came back it is T1HG, so he said the BCG did not help me and my only options are bladder removal and get a neo-bladder or he can send me to an oncologist doctor and see what he can do. So I went to the cancer doctor he recommended so I went to him on June 26th, 2020 and he was nice doctor and went over my entire case and he suggested two option:
1) Radiation and Chemo for 5 days a week for six weeks
2) Pembro (Keytruda) once every three weeks
At this point I do not know what to do as both options have long list of side effects and I know it should help fight my cancer and do not know if I want to live with the possible side effects.
I know a lot of people will say do one of the treatments as that will hopefully get rid of the cancer but at this point I have for the most part not issues as far as side effects other then feeling tired or getting tired easily. So I do not know if I want to make such a large change in my life at this point. So at this point I still have NOT made a decision and I am going to my cancer doctor this coming Monday July 13th, 2020 and I know he will ask me if I have decided yet and right now as I type this I have not decided, I am so confused and feel like there is no place to turn.
Not knowledgeable on Keytruda but T1-HG here failed BCG many times returned and they used Gemzar intravesical on me and good results for 1 year now??? I also wonder how fast this develops and no one in medical field will give me an answer. Good luck. I wasn't aware the bladder could be irradiated?? This BC stuff is persistent and unforgiving that's for sure.
You are asking good questions. The problem here is none of us are doctors. You still have some time to make informed decision although your clock started in March so you do not want to delay.. Perhaps a second opinion at a major bladder center in a university setting if available or hospital such as MD Anderson will give you other options. Perhaps a clinical trial?
Also, I am adding via attachment a long questionnaire of things to ask a doc before surgery. WAY too many questions, pick and choose what fits you.
I am aware of Keytruda but, not well versed on it's use with bladder cancer. I do know the gold standard in BCG failure is a cystectomy...it gives you the best odds of survival....really good odds especially at T1HG. Hate to be that blunt. I have 2 friends/aquaintenances doing well with this 5+ years out!
If it were just me, I'd get that second opinion for peace of mind plus they have more guns and ideas as a cutting edge in a major bladder cancer center. What area of the country do you live. Perhaps someone will a best recommendation.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I can understand your feelings and confusion as to what might be the best course of action to rid yourself of bladder cancer. I was in your shoes 8 years ago. My urologist tried mitomicin treatments, which did nothing. Then it was months of BCG treatments, which were difficult and did nothing. Felt like I would never have a good ending to my bladder cancer, especially after losing a kidney to cancer in 2012.
So, the next step according to urologist - bladder has to come out. Needless to say, I was devastated. After all the treatments, TURB's and anxiety out the roof, it came to that. So, I decided to get a second opinion, which I highly recommend to you, at Fox Chase Cancer Center in Philadelphia. All they do is cancer, and they are excellent.
Bottom line, in March 2016, after three rounds of heavy duty chemo, an excellent female cancer urologic surgeon removed the bladder and I now have an ilieal conduit. That is, she took a piece of my small intestine, made a "hole" in my abdomen and called it a "stoma". I have a bag that attaches to my abdomen and the urine now flows into this bag. At night, I have a larger bag that collects my urine overnight. No more getting up in the middle of the night to pee!!
I will tell you, this was a life altering experience for me in many ways. I fought with everything I had to keep my cancerous bladder, but that wasn't going to happen. I resent having to wear this bag all my life. I can't tell when I am passing urine into it, just have to be mindful when this bag starts to fill. However, I am still alive and kicking at 73 years of age!! I am still married to the same wonderful man for 51 years!! I have four gorgeous grandchildren whom I am loving and enjoying watching them thrive and grow. I have two beautiful adult children whom I love. Many family and friends. In other words, I have a life now that I may not have had if not for the surgery and follow-ups with my excellent oncologist at Fox Chase.
Didn't mean to go on like this, but I wanted to paint you a picture of my experiences. I hope you find the right way to proceed, and I wish you the best of luck. Feel free to reply with any questions or comments that might help!
Pembrolizumab (Keytruda) was approved by FDA early this year as a treatment for BCG unresponsive non-muscle-invasive BCas. Merck expertise (paid to FDA) the approval process after a promising interim result of the Phase II clinical trial (Keynote-057). Out of 102 patients who had enrolled in the trial, 60 did not respond to the treatment, 23 had recurrences. Of those who did not respond and had recurrence about 45% underwent cystectomy after discontinuing the trial. Median (range) follow-up was 24.3 months (14.2-36.5); CRR (complete response rate) was 41.2%. More detailed information is available from the link below. Please note the trial included CIS only, CIS+HG and HG. Also, I vaguely remember that CRR was higher for HG only patients than CIS or CIS+HG patients.
I recall when I was watching a video of Dr. Kamat presenting the interim result, he highlighted that none of 102 patients had progressed to muscle-invasive during the treatment.
I have listed below the link to the interim result of Keynote-057.
I do not know why the doctor is also recommending chemotherapy + radiation therapy for T1HG. I thought this approach was usually for the patients with muscle-invasive BCa who either refused radical cystectomy or ineligible for the surgery. As others have pointed out, I am also aware that some doctors will try BGC+Interferon or intravesical chemotherapy when there was recurrence after BCG therapy. I know three paints who have been NED for almost 3 years after BCG+Interferon treatment after their initial BCG.