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I am a year+ survivor of high-grade, non-invasive T1 bladder cancer with CIS. I can’t believe how lucky I am to say this, and how close this call has been. I do have a few experiences to share, which I hope will be helpful to someone facing this.
My first diagnosis of bladder cancer was in Dec of 2018, after a routine cystoscopy found a recurrent tumour. I had luckily been diagnosed with a “pre-cancerous” polyp several years before, and was getting routine cystoscopies to make sure there was no recurrence. I started off as low-grade, T0 but had CIS at my first biopsy. After the first 6 BCG treatments, I had a recurrence of higher-grade BC, and then went on to have blue-light to find all of the CIS. I kept up with BCG throughout it all, the TURBTs became too many to keep track of ( I think there have been 7)
I’ve had a total of 24 BCG treatments.At first they were just fine. The worst part of it was the 1 hr drive home during rush hour. I then only had one hour to roll around, put my legs up, somersault, and try to disperse the BCG around all aspects of my bladder. Then it started getting a bit harder. I have a lot of willpower, and could usually manage the 2 hour hold, and the fatigue became pretty acceptable to me- a small price to pay, I thought.
Then something unexpected happened with my last BCG. I developed horrible UTI symptoms, severe urgency and burning. I got my urine tested, and it did not really show much of an infection. But the symptoms were getting worse, despite a series of antibiotics. Finally, my urologist suggested that I might have a BCG infection. I was scheduled for another TURBT for the abnormal red patches seen on my last cystoscopy, so at least had a biopsy to confirm what was happening in there. I went home from that surgery with a catheter in for 5 days, and when I pulled it, I went through the worst urinary symptoms I’ve ever had. I could not go more that about 20min without peeing and was in constant pain. This was happening in April, when seeing a doctor in person was nearly impossible. There were also no public washrooms open, so I became adept at crouching in the bushes in various parks. I was able to have a virtual meeting with an infectious disease specialist, then was referred to my local TB clinic to start a course of TB drugs.
6 months later, I have finally finished the course of these fairly toxic drugs, and feeling that my bladder is doing OK. It is not what it used to be, and my last cysto still looked pretty inflamed, but there have been no tumours for the last 3 biopsies, and one of my urologists has declared me a “delayed responder” to BCG. I am also done with it as a treatment option because of the infection.
Still, I tell myself that the chronic inflammation I have in there is actively keeping away any cancer growths.
I still live with a mixture of fear and relief. I practice gratitude each time I empty my bladder and look at the nice clear urine. I feel every twinge it makes, and hope I can keep this precious part of me intact. And yet, I have gone through the process of letting go, facing whatever happens in the future, and keeping hope alive. I have much respect and encouragement from everyone who shares their stories on this forum.
Hi Coastaldoc:
And I thought I had a rough time with BCG treatments!!! Wow!!
I commend you for your perseverance during your treatments. I had 21 treatments over 3.5 years with 2011 being the toughest year to deal with BCG side effects. My last treatments were in January 2012 and it was into 2013 before I started feeling better. I’m glad that I persevered because I’m 10 years cancer free. My thoughts and prayers are with you that the treatments have worked and that your side effects will lessen soon. Thanks for sharing your experience. ((((HUGS))))
Wow coastaldoc you have really been through a lot! It is enough to deal with the uncertainty, anxiety and fear, but you also had to deal with very extreme, persistent and inexplicable pain. You must be one very brave person to have come through the other side intact (both physically and mentally). I salute you! I also appreciate you posting your story as an inspiration to the rest of us. Thank you so much. I am earlier in the journey – diagnosed last December T1HG with CiS – and have just started my second round of 6 BCG treatments as the first 6 didn’t work. You have given me a role model in stamina and courage which will certainly help in the days ahead. In the meantime I hope COVID isn’t getting you too down. Stay safe!
Hi CoastalDoc- Saying you feel lucky- that fatigue is a small price to pay- having gratitude each time for clear urine and keeping hope alive-These are good reminders for me as well as your letting go of whatever happens- Thankyou for your words. Very helpful as I wince at every twinge- I dislike being fatigued as am used to being such a go getter tho am understanding there’s a reason for me to slow it down- lol and now am waiting for a biopsy on a moderately suspicious nodule on thyroid. I was diagnosed August 2019 with NIMBC ta high grade. 9 sets BCG – 3 coming up next month( December ).
I admire your perseverance in your treatments and I’ll take it with me. I feel very lucky myself- only 1 Turbt with the follow up Turbt. All clear since except for the nodules they are keeping a check on. Thanks- hope all is well for you as can be-
Tana
wow, thanks for the awesome words. I was considered a late responder to BCG, as I had a recurrence after my first 6 treatments, but kept going. Hang in there!
Hi, Tana. Thanks for your kind words. I realized early on in this game that I would be in it for the long haul. I had one person say to me about fatigue,” it’s like you lost your 5th gear”. That’s it exactly. Now that I’m off the TB drugs and will never have BCG again, I feel the energy slowly coming back. It was an opportunity to slow down and be kinder to myself, be ok with the odd day on the couch, and work on communicating better. It is OK to feel let down by your body. I said out loud early on in my diagnosis” my body made a mistake” now I’m working on how to teach it to be safe and healthy.
Good luck on your journey
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