Reoccurring bladder cancer - feeling fed up!

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I’ve just found out at my regular check up that I’ve got a reoccurrence of my bladder cancer. I am currently waiting for surgery. I know it’s treatable and it will be fine, it looked much smaller than previous tumours when I saw it on the screen and I’m reassured that it wasn’t there at my last check 6 months ago.

However this will be my 6th operation and 4th recurrence since 2019 so I know this process well. I’ve had TURBTs each time and regular check ups throughout the last few years but for some reason this reoccurrence has really knocked me mentally. 

Ive been feeling pretty exhausted, worn down and getting pain in my back (I’ve not had this before with bladder cancer) and I’m not sure if it’s related or just a coincidence. Has anyone else experienced this? 

I also wanted to ask about small reoccurrences, I know the nature of bladder cancer means that it’s likely to return but I’m struggling with this being back and wanted to ask how many reoccurrences others have experienced? 

I’ve been lucky they have all been caught early and they have been either low or intermediate risk and all contained in the bladder thank goodness. Despite this I feel so fed up, it feels like it just keeps coming back and I feel like because I’m younger than most people my consultant treats (30s) it’s hard to find anyone else to relate to. Even my consultant isn’t sure what to say and just reminds me she had 90 year olds who she’s treated for 10 years +. 

Im not sure what I’m asking for on here, other than to reach out in the hope that someone understands the frustrations and difficulties. I feel a bit guilty feeling so worn down when I know I’m lucky it’s not worse. I just feel like with each reoccurring tumour I feel more scared about what’s next. I’m worried it means I’m likely to get cancer somewhere else and I just feel worn down by the constant need to urinate and then the bigger picture of yet another operation.

Interestingly this time and last time I had no visible blood  in my urine like the others…. Just microscopic. Has anyone else had this too? It makes me nervous that I won’t pick up signs of other reoccurrences! I suppose that’s why we have frequent check ups. 

Thanks you so much for any support, I just wanted to reach out. 

  • Hi  and welcome to the group. Unfortunately we know BC has a high rate of recurrence and some people have more than others. It must be hard having frequent TURBTs to remove the offenders. Good that we are checked regularly to pick things up early. Not unusual to see no blood in very early stages. Not surprising you are feeling a bit down. Have you had any other treatment such as BCG to help prevent recurrences. Lots of support in this group. Best wishes.

    Best wishes to All,   rily.

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  • Hi Serenitystar

    From reading your post I can see that you have far more experience of BC than I do. I've had 2 TURBTs since March this year and started on BCG therapy today. In that short time my mind has been in turmoil so I can definitely understand how worried you are with each reoccurrence. 

    This forum has lots of lovely people ready and willing to talk to you and share their experiences. So hold your nerve, take each day at a time and keep posting on the site.

    I'm sending you positive vibes and a big virtual hug.

    Love Ade xx

  • Hi Serenitystar,Welcome to our friendly group.I’m sorry your cancer keeps recurring.From my early 20’s I had a chronic bladder disease that kept causing bladder ulcers and red patches and was back and forth to have them removed.Although they were not cancerous then I do remember how fed up I felt that I was never free of pain and symptoms.When they finally found pre cancerous changes the surgeon said he had only ever seen the same once in a very old man.I was in my 40’s.I had no visible blood when I got cancer.I know you will get lots of support from the kind people on here and I hope you find the group helpful.Love Jane 

  • Hi Serenitystar

    Sorry to hear this is your 4th occurrence Disappointed

    I was wondering if you have had any treatment other than TURBT

    I am on my 2nd occurrence and due to start 6 x Mitomycin chemo next week

    Much love, Tina X 

  • Hi  , I can totally relate to your post.  I am a female in my early 40s and just had my second TURBT after finding 2 new (small) tumours on my last routine scan - no symptoms that I have been particularly aware of.  My first one was in 2022, which was also symptomless and only picked up on an MRI for gynae issues.

    My consultant is great, but seems to prefer a conservative approach - like you, I don't know if this is because of my age combined with the fact that nothing seems to have progressed to a more serious stage.  That said, I am not due to get my pathology results until next week (I remain positive and optimistic though!).  I didn't have any instillations in my bladder last time and I don't think he intends to recommend them this time if it is still low grade and not muscle invasive.

    I know I'm only on round 2 and that has been enough for me to start feeling really fed up and maybe a bit more worried than I have been previously if I'm honest.  I really sympathise with you on round 4, and I too have read stories from people who have been around in this circle even more times.  Accepting that this is a long-term, whack-a-mole, cancer, I am focussing on my primary goal of keeping hold of my bladder for the long life ahead of me, which helps me to keep the stresses and the inconvenience in perspective.

    I really hope everything goes well for you Fingers crossedGreen heart

  • Thank you so much! You are right, thankfully regular checks do make this much more treatable. I haven’t had bcg, I had mitomycin wash on my first TURBT and then was offered 6 weekly installations but due to Covid this was then stopped before it started and I’ve not been offered in since!

    thank you so much for taking the time to reply.   

  • Hi Ade,

    thank you, it’s reassuring to hear from others although I’m sorry you are having to go through it too! How was your bcg? Are there many side effects to expect? I hope all went ok! sending healing vibes and hugs back! X

  • Thanks so much Jane! It’s really helpful to hear your situation and thank you for offering your support. I hope you are doing well now? 

  • Hi Tina! 
    good luck for the mitomycin chemo. I had just the one “wash” of mitomycine on my first TURBT but that’s all I’ve had. I was offered 6x course but due to Covid it then got stopped and I’ve never been offered it again. 

    I might ask my consultant about it as it seems like it might be sensible if I’m getting several reoccurrences. I know they said about there being a shortage at one point but maybe that’s now changed. 

    I really hope it all goes well for you. Keep us posted! X

  • Thank you so much for replying, I’m so sorry you’ve had to experience this too but your reply really helped me to remember I’m not alone and we are all out here fighting our own battles. 

    It’s interesting that you’ve experienced a conservative approach, I think our ages and low grade must be a good thing although it doesn’t always feel like that! I often wonder if it’s too conservative and the constant worry is getting me down especially after this reoccurrence- but you are right! I suppose we have to trust they know what they are doing and they have experience of knowing when to “ramp up” treatment etc. 

    It’s good to read that others have had treatment and then had no other reoccurring tumours etc. I expect the worry is always there but hopefully regular checks should relieve that! 

    how are you feeling about your results? I do hope they are ok as can be and continue to be small and low grade. 

    How have you found the impact of things on your daily life by the way? 

    thank you again for taking the time to reach out. 
    thinking of you and sending well wishes! X