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Question to those who took 6 BCG treatments: New tumors

Posted by Deidre77 @deidre77, Jul 27 12:31pm

I would like to know how many people who took the initial 6 BCG treatments and afterward a scope showed new tumors, chose to stop BCG continuance and sought alternate treatments.

Not only did it cause temporary reactive arthritis but I continue to have uncontrolled incontinence which I did not have prior to the treatment.

I wonder whether doctors suggest continuance of BCG despite its lack of success. I am scheduled to meet with a new surgeon tomorrow for a tumor removal to be scheduled soon and will ask his opinion since he is an oncologist/surgeon.

There is so much to research, to learn and asking about the experience of others who have gone through similar situation is a tremendous help. I will ultimately seek the advice of a doctor at an accredited cancer facility as well.

I appreciate any responses. Thank you.

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Deidre77 | @deidre77 | Jul 31 9:58pm
In reply to @waynewaraksa "So sorry you are having issues after BCG I have been dealing with bladder cancer for..." + (show)
Profile picture for waynewaraksa @waynewaraksa

So sorry you are having issues after BCG I have been dealing with bladder cancer for a little over 30 years it started when I was in my fifties I’m know 78 and have had over 30 surgeries to remove tumors. I have recently finished 6 BCG treatments and had my follow up Cystoscopy and no tumors were present so I’m scheduled to have a follow up 3 treatments in a couple of months. To date I have not had any problems absolutely no side affects so I’m feeling very fortunate and it breaks my heart to hear about all the people that are having issues I’m praying for all of you that once and for all we can all be cancer free and live out our lives without this horrible disease.

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Hi @waynewaraksa -
I was extremely surprised to hear that you have had bladder cancer for 30 years. I think most, during that time, would have contemplated bladder removal since being subjected to 30 surgeries seems like endless ordeals one would wish to avoid.

I am interested to know (if you feel like sharing) the various treatments you have had along the way. Also, I am wondering if you have had long periods during which you have been cancer-free. (perhaps for years at a time).

These tenacious tumors are relentless once they take hold in our bladder and although I am only beginning my second year - I am trying to steel myself (so to speak) for a long and arduous journey in the hope for success - this being the termination of my bladder cancer. I am all too aware, unfortunately, that once tumors develop in the bladder and are removed, it seems unlikely that no further tumors will emerge.

It is encouraging that you have had no negative side effects from your initial BCG instillation and it's wonderful that have been deemed clear presently. I hope this will continue as you most certainly deserve this after 30 years.

Sending my best wishes that you remain well.
~~ Bobbie ~~

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bettychamb | @bettychamb | Aug 9 10:32pm

I had six BCG treatments after a bladder cancer tumor removal. Well 1 the day of the removal and then the other five weekly. Biopsies were done and the tumor was non-invasive so I waited for my kidney removal due to cancer of the kidney and ureter and, on the day they went in, they found another bladder cancer tumor, and had to decide whether or not, they could move on with the scheduled kidney removal surgery. I had a team of two head surgeons at MAYO and 1 assisting Surgeon along with nurses and CNA‘s. A 3 1/2 hour surgery turned into 7 1/2 hours. Biopsies now show that there is no cancer in the lymph nodes, muscle or bladder now. That’s good news, right? I have my Care team meeting on the 14th. I have decided to give up caregiving after over 30 years and a 27 year career of being director of a paratransit until I retired and moved to Phoenix. What a great place to be when you get cancer due to the proximity of terrific care. Another hospital could not even be bothered, returning calls, much less and still any sense of confidence. My Doctor called me as soon as the pathology results came in, knowing that I would feel a sense of relief by hearing it. It’s Monday. I’m learning to wait more patiently and think more positively. I’ve lost much of my hair, but it was due to stress because the BCG treatments are not supposed to cause hair loss. Funny what you can do to yourself through your own thoughts. Is the whirl wind over or am I just learning that I need To meditate more and take better care of myself.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Aug 10 9:16am
In reply to @bettychamb "I had six BCG treatments after a bladder cancer tumor removal. Well 1 the day of..." + (show)
Profile picture for bettychamb @bettychamb

I had six BCG treatments after a bladder cancer tumor removal. Well 1 the day of the removal and then the other five weekly. Biopsies were done and the tumor was non-invasive so I waited for my kidney removal due to cancer of the kidney and ureter and, on the day they went in, they found another bladder cancer tumor, and had to decide whether or not, they could move on with the scheduled kidney removal surgery. I had a team of two head surgeons at MAYO and 1 assisting Surgeon along with nurses and CNA‘s. A 3 1/2 hour surgery turned into 7 1/2 hours. Biopsies now show that there is no cancer in the lymph nodes, muscle or bladder now. That’s good news, right? I have my Care team meeting on the 14th. I have decided to give up caregiving after over 30 years and a 27 year career of being director of a paratransit until I retired and moved to Phoenix. What a great place to be when you get cancer due to the proximity of terrific care. Another hospital could not even be bothered, returning calls, much less and still any sense of confidence. My Doctor called me as soon as the pathology results came in, knowing that I would feel a sense of relief by hearing it. It’s Monday. I’m learning to wait more patiently and think more positively. I’ve lost much of my hair, but it was due to stress because the BCG treatments are not supposed to cause hair loss. Funny what you can do to yourself through your own thoughts. Is the whirl wind over or am I just learning that I need To meditate more and take better care of myself.

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@bettychamb You are so lucky to have a great medical team for your care, and a good attitude to appreciate all that they are doing for you. My husband has dealt with bladder cancer for 6 years now. He was a BCG failure and finally ended up with a radical cystectomy and neobladder but is cancer free. The whirlwind may be over for now, but bladder cancer does like to recur so being realistic and having frequent followup procedures is par for the course.
Taking better care of yourself is all important. I recommend a very positive book by a retired Mayo Palliative Care physician Dr. Ed Creagan. I reread this book occasionally to remind myself of the benefits of self care. ( I also am a 14 year survivor of a terminal cancer.)
How Not to Be My Patient can be found at the Mayo Bookstore or online. Good luck to you.

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bettychamb | @bettychamb | Aug 10 9:01pm

Thank you for the suggestion I will read it

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141emp | @141emp | Aug 11 5:57am
In reply to @sepdvm "@bettychamb You are so lucky to have a great medical team for your care, and a..." + (show)
Profile picture for Sue, Volunteer Mentor @sepdvm

@bettychamb You are so lucky to have a great medical team for your care, and a good attitude to appreciate all that they are doing for you. My husband has dealt with bladder cancer for 6 years now. He was a BCG failure and finally ended up with a radical cystectomy and neobladder but is cancer free. The whirlwind may be over for now, but bladder cancer does like to recur so being realistic and having frequent followup procedures is par for the course.
Taking better care of yourself is all important. I recommend a very positive book by a retired Mayo Palliative Care physician Dr. Ed Creagan. I reread this book occasionally to remind myself of the benefits of self care. ( I also am a 14 year survivor of a terminal cancer.)
How Not to Be My Patient can be found at the Mayo Bookstore or online. Good luck to you.

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Dear @sepdvm , I read this book after an earlier post from you. ( I think?) I agree, it’s a good read😊

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michzn | @michzn | 4 days ago

Oh, my thoughts are with you and I pray you get better results, this is such a pesky disease to deal with, I am curious if you had the VLAR LABS VESTA test? As I have relayed in earlier posts, I had to literally beg for the test thru CCF (Cleveland Clinic Foundation). The test while relatively new indicated that my tumor had a biomarker that indicated I would not be a likely candidate for BCG treatments. Since diagnosis I have had 3 TURBT’S in 5 months and now am waiting for another follow-up scope next month.

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