Potential Recurrence

Hi catlady101 . Sorry to hear you are in limbo worrying whether it is back or not. These red patches are common on here and in many cases they turn out to be inflammation from treatment, so hopefully that is what it is. I have had several false alarms over the years. Inflammation can look like a recurrence and so they need to check. If it does turn out to be back, then it sounds as if your team are on the ball and ready to deal with it. I hope all goes well. Best wishes.

Hi catlady101, I had at least 4 reoccurrences (one each year) during my BCG treatment. Each time tumours were removed and we just continued with the treatment. I had 27 doses of BCG (which at that time was the protocol for BCG) over three and a half years and my last reoccurrence was after dose 24!! Finally after dose 27 I had my first whole year clear. Then another whole year clear, then another etc. Here I am 5 years since that last dose and still all clear. But my fingers are still crossed every time I go back for my now annual cystoscopy. Bladder cancer is a one day at a time thing. But they have many different strategies they can use so try not to feel too disheartened. Keep us posted on what happens tomorrow. Good luck, we'll be thinking of you. Love Hx

Hi all thanks for the support and responses!  I'm in a slightly different situation in that I'm on a trial at the city hospital in Nottingham.  I had 6 weekly BCG treatments to start and then monthly, moving to 3 months, all done in 18 months so my treatment was done by January 2023.  The trial is testing the efficacy of high volume at the start and a shorter cycle.  On my second 6 month review I had red marks, and moved back to a 3 month review.

We were convinced it had come back but my lovely cystology lady was really great and went over 3 times so that I could see it all and made sure I agreed with her that all was clear. 

I was diagnosed young, at 50, my daughter was only 15 at the time and my son 18.  The impact this has had on them was very hard and I was so worried about the consequences of a recurrence for them so I'm soooo pleased we are still clear and continuing to kick it down the road.

Thank you for continuing to be a supportive and informative gang as we all travel this journey. xxx

Hi catlady haven't spoken for a few years. I really hope it's just red patches and that they can maybe do a TULA blue light which I had once on a patch they were not sure about. 

I too am back on the cancer road, just after Xmas my lymph node in groin came up quite painful and CT scan is saying suspious of cancer but more worrying are lung mets so I am waiting on a biopsy on the lymph nodes then it's that long wait 4-6 weeks for results, all very worrying and disappointing as I have been feeling fine. Had a camera to bladder in December, all clear and had the last of my bcg in October so was looking forward to this year with just cameras at 6 months. Not really sure which way to turn, they are saying they do not think is has come from bladder but they cannot be sure.

I really hope your check up on Friday went well sending best wishes to you 

Hi Bumblebee49, sorry to hear you have suspicious potential reoccurrences. It's always a worry every time something changes, particularly when results take a long time. Hopefully you are getting good support from your Urology team and in particular your Cancer Nurse specialist? In my experience that team of nurses is the best at understanding the anxiety of patients awaiting next steps. Just remember there are always a range of other treatments waiting in the wings. Keep us posted Love Hx

Hi BB, I am really sorry to hear you are going through this uncertainty. It must be very worrying for you. Could it be a BCG thing reaction. ? 4-6 weeks is such a long time to wait for any results, I really feel for you. sending you my love BB, keep in touch xx

Thanks Herothedog, yes it's a scary time again, I seemed to get through the last three years really well and it's a blow to think that it has returned somewhere else, not expecting this to happen as everything went smoothly with the bladder cancer. Never mind got to be strong again x

Hiya, no they have not mentioned bcg as being the problem, it seems I might have some cancer else where from what I can understand. Once they do the biopsy of lymph node will know more, quick a shock as everything seemed to go smoothly with bladder. Never mind chin up and all that back in the system again. Not where anyone wants to be. Xxx

So sorry to hear this!  Keeping everything crossed for you xx

Hi Bumblebee

So sorry to hear this, you were doing so well

Keep us updated, I am keeping everything crossed for you

Much love Tina x