Follow up delay anxiety

Hi . I think many on here will share your anxieties with the delays in treatment. It is always worrying when there are traces of blood and difficult to get answers. There is always a possibility it could be an infection, and if you can manage to get a surgery urine test done, it will give you some ideas. We really do not know how things are going to pan out, but I was told they are trying to open up some clinics soon. I hope they can get you in somewhere. Best wishes.

Hi Ripon 35, totally get the pressure you are under. Already half asleep myself but just want you have a couple of replies for some comfort. Rily is so good, always on it. Could you try one of those free calm YouTube soundtracks to help you sleep better, leaving your phone well away from the bed [as the radiation isn't healthy to have less than a metre from you]. They've been a big help to my anxious husband.

The other thing I have time to type now, is he was G3 pta around ten years after what we now know was a TURBT f multiple growths, but he wasn't told it was cancer and there was no, repeat no, follow up of it. So only got that diagnosis after moving 120 miles and getting 'old man getting up in the night' symptoms. But now despite recurrences he's clear with 6 months to next check. So your grade and staging should hopefully not be too awful but whatever happens we are all here for you.

Night night

Denby

Hi Ripon35, totally understand your anxiety. I'm an old hand 3 years down the road since diagnosis and my cystoscopy in March was also cancelled, plus my April BCG maintenance doses. I have had two reoccurrences in past 2 years so naturally wondering if I have more tumours growing. But just to reassure you I had my initial tumour for three years before my (previous!) GP referred me to Urology, and though tumour was huge and Grade 2 T1 I am still here to tell the tale. It is frightening to get the C-word diagnosis but it doesn't need to mean the worst so do try to take life one step at a time and enjoy those gorgeous children in the sunshine. xxx

Thank you all - truly. It is reassuring to read other people’s experiences.

it did take approx 1 year for my old tumour to grow, so a few more months delay in checking for a new one shouldn’t be a problem. 

the rational side of my brain knows this - but as we all know, sometimes the rational goes for a holiday and the emotional side has a bit of a field day. 

We all absolutely do know those emotional panics. And not unreasonable for us to feel panic either. Difficult at the moment to know which looming danger to panic about first! Think I'll go out and plant out a few beans in the sunshine. I find getting my hands in the earth helps me. xxx

Hi Ripon35, just to add last year I had microscopic blood in my wee that was found for a different matter, I had antibiotics that didn’t shift it so they brought my cystoscope forward and that was all clear, I had a CT scan to make sure it wasn’t my kidneys that was all clear, I was told people can and do just have microscope blood for no reason although I can’t remember having it before, I’m grade 3 pta, cancelled cystoscope this month but been clear for 7 years. Good luck and hope it’s nothing x

Thank you SueCC - that is incredibly helpful to know!!!

I too have just a trace amount, so I’m hoping it’s nothing but would just prefer to get it checked out. 

Hope you get your revised cystoscope date soon too 

xx

I'm a male and can relate to sueCC's post. I have a review and too worried but many in the same boat. ATB

Hi Ripon

I feel your anxiety and hope you feel a little less anxious after getting support from members here. I remember those times in the initial first years when I didn’t know what “beast” I was dealing with. It turned out to be a very indolent slow growing one - 16 years later it is only a nuisance. I only had mytomycin once when the original tumour was removed. Since small reoccurrences are taken out by TURB.

So hopefully if they said you are small risk it won’t make too much difference to wait until the worst of the covid pandemic is over. 

I am a mummy too to a young one :-)

Here to support you and give you hope if I can.

Be well :-)

Catarina