Recurrence

Understandable that you feel down about the recurrence, but it is always a possibility. All depends on the path report as to next steps. If low grade, they may say carry on with BCG, but if high grade again, might discuss other options. I don't think there's a hard and fast rule about it. Best wishes.

Morning Dragonfly, sorry to hear your news following your latest flexible cystoscopy. On my journey 2018-date I have had two superficial recurrences which were dealt with two rigid cystoscopies and 15 BCG instillations. Last six month check up was clear. Wishing you the best.

Hi Dragonfire, I had at least 4 possibly 5 reoccurrences, I'm afraid I lost count. That's a very small tumour if it turns out to be one, so caught really early. In the end I had the full Lamm BCG Protocol of 27 doses (which in NHS has now generally been reduced in number because of bladder inflammation) and the last reoccurrence was after dose 21! Dose 27 was August 2021 and since then fingers crossed I have remained clear. I had begun to worry about how many times I could have TURBTs without my bladder wall getting too thin! Try not to worry (I know that's easier said than done) trust your team, and be kind to yourself. Try to relax and find joy in your life.........lovely friends/family? Junk tv? Cake? Hxx

Hi.

I had exactly the same thing happen to me.

I had 12 sessions of BCG and on my Flexi cystoscopy they noticed suspicious goings ons which they biopsied and lazered. 

It scared me half to death, especially after all the hard work, treatments and having previously clear cystoscopies.

In the end I did have my next sessions of BCG treatments bringing it up to 15 and have stopped there.

My nurse did talk about other possible types of treatment we could try before having to go down more radical routes but thankfully they weren't needed in the end.

My last 2 cystoscopies were clear!

Keeping everything crossed for you and wishing you the best of luck!

 Kitty

Hi, I know from experience that recurrence happens during BCG…happened to me twice and it’s unnerving and disheartening but try not to despair…the BCG is challenging but effective…you can see from the replies that there is not not one set answer…so many factors to take into consideration with a recurrence before a decision to change treatment plan…I found the BCG and cystoscopy cycle a rollercoaster…

Hi Frank. I have had my course if 12 BCGs but tumours returned twice including on the last recent check. They are still grade 3 aggressive so I have been told the treatment is classed as "failed" and that bladder removal would be the next step. I have refused that as I had a kidney out 2 years ago with "bladder-type cancer"  and simply cannot face another major op. Can I ask what grade yours were and did you have further BCGs??

Hi Dragonfire. I SO empathise. I recently finished my 12 BCGs and had a recurrence and TURBT part way through. Then more tumours found at the last check up.. high grade and aggressive again .. and another TURBT.  I was told the other day that the treatment was classed as "failed". I have refused bladder removal (at 75 and less than 2 years on from a kidney removal I don't want more major abdominal surgery). So they are going to try a second round of BCG. It seems everyone has different experiences with BCG treatments. Recurrences are common and it seems the frequency and grade/level of aggressiveness of the recurrences is the basis on which they make decisions. Lots of people have more than the 12 and the bladder seems to cope. The cystoscopy itself can be repeated many times as far as I am aware..I have had 4 so far! It has helped me to cope to read other peoples experiences and to realise how they vary so widely...so it was no surprise to get recurrences. Try not to worry too much, trust your team and try to enjoy each day. Best of luck. Keep us posted.

Hi TillyV, I feel exactly as you do about major abdominal surgery in my 70s, soon to be 80s. As well as possibility of having more BCG doses, I believe radio therapy and another type of immunotherapy could be available. Despite being clear for 5 years now I have a hunch I will be having flexi screening for rest of my life. I'm afraid with BC you can never be sure you are clear. I lost count of how many reoccurrences I had during the treatment. I'm with you...value every day and let good health make your heart sing. Enjoy every pleasure you can find (in my case the odd glass of wine, the plants and wild life in my garden, a Labrador's head on my lap and the odd huge slice of cake!) Let us know how you get on? Love H xx

Thanks.. I so agree. Find joy while we can. I think we "oldies" are relatively lucky in that we have had a "good innings" and in my case that fact, and having no dependents, makes a big difference to my ability to cope calmly with it all.  I have an MRI and a PET this week as they have recently realised - when radiology pointed out something odd - that they left a 4cm length of diseased ureter inside 2 years ago when they removed my kidney and ureter.. they are panicking a bit I think. So possibly a bit of a rollercoaster ahead for me .. we will see. I told him that as long as they keep me going til my son's wedding next September I will forgive them.You laugh or you cry! Tx