Hi my name is Ella and I’m 5.5 years from my original cancer diagnosis at 2b. I had radio, chemo and brachy. I was discharged from oncology September last year.
Recently after straining (tmi) I had some blood in my urine. It is clear in between and I went a couple of days with nothing then after gardening yesterday it reappeared once and is now clear again. I did do a urine sample which came back clear, no white cells, no red cells and a low Epithelial cells count. I am waiting for my oncology team to get back to me but absolutely scared that the cancer is back. Has anyone else had these symptoms? Just feel helpless.
Was told it maybe be chronic radiation cystitis and was wondering if anyone else suffers from this?
Hi Pelly97 and welcome to our group.
It’s very scary to have any kind of unexplained symptom after going through cancer and treatment, so I can understand seeing blood will have worried you. Are you sure it was from your urine? Sometimes it can be hard to tell just exactly where it’s from, especially after straining.
I had radiation cystitis but only while going through radiotherapy and I didn’t have any blood or infection. However it is possible for radiation cystitis to be a late effect from treatment which appears long afterwards.
As your urine test was clear from anything when you got it tested, it may be radiation cystitis but it’s best to get things checked further. I see you’re waiting for your team to reply to you, so when they do, they may want you to come in for a physical check.
I know the first fear is that the cancer might be back, and it’s really hard to sit with that worry, but hopefully you’ll hear soon about what your consultant wants to do next. It might be something and nothing, but getting checked is the best thing to do for some reassurance
Sarah xx
Thank you.
It is so scary when you have gone so long and then see red again. Especially when it is a totally new symptom. Feels like the world comes crashing down again and I am a very anxious person and always fear the worse.
I spoke to my oncologist yesterday and he thinks it more likely to be radiation damage as opposed to anything sinister. He said where my original cancer was it would be unlikely to be a recurrence and the chances of it being a separate case of bladder cancer even more unlikely.
He is going to send me for an ultrasound, cystoscopy and blood test to confirm. These will all hopefully be done in the next coupe of weeks.
I have struggled with late effects my whole cancer journey and am blighted by many side effects. I am lucky to have a late effects clinic for pelvic radiation in my area. I spoke to my consultant through that this morning and she has said the same as my oncologist.
I feel reassured but won't be at rest until the testing has been done and cleared.
Thank you Sarah and Granny55 
Ella xx
Hi Ella
It’s good to be getting tests just to put your mind at rest, especially if you’re by nature a worrier.
Radiotherapy can make the tissues in the treated area quite fragile, and more prone to bleeding but it’s very scary to see any blood after treatment.
Hope all your tests get completed quickly and you’ll let us know how you get on-it’s really helpful for others reading posts to know what happened in different situations in case someone else is worrying about anything similar.
Sarah xx
