is this likely to be late radiation damage? Blood in urine.

[Salixitch]

I’ve been scouring the internet for advice in my specific circs and finally found this page 🤞

I was treated with chemoradiation and brachytherapy 9 years ago for 2a cervical cancer. I’ve always had (since the treatment) iffy bowels and bladder - but low level, manageable if I’m careful. Very aware of the fibrotic changes this late on as I professionally treat patients who have radiation to a different area of the body.

A few weeks ago after doing some strenuous exercise, I suddenly had blood in my urine. Actually thought ‘I’ve clearly overdone it, bet that’s my dodgy bladder playing up’. After a few days of a few aches, no further bother. Then it happened again and sometimes when I went there was blood and sometimes not. Low level UTI type signs as well. Then yesterday, there was a big bleed, clots and all. Massive panic. Still aching, urgency, feel under the weather. Scared to go to the loo in case there’s blood - often not - feel like it’s taunting me.

GP has given me antibiotics to kick things off and then in a few days will do more referrals as required depending on what symptoms are left.

Obviously I firstly assumed I had bladder mets. Then after googling these symptoms, I wonder if I’ve either got a strange UTI that isn’t like one I’ve ever had before or maybe it’s the start of pelvic radiation disease??

Has anyone else has large bladder bleeds / clots etc and sort of UTI symptoms?

[Jimbo65]

Hi salixtich, I've had very iffy bowels and bladder and for some time. Also cervical cancer treated with chemo and radiation and lots of damage definitely caused. I have had urine retention now. Not picked up by health professionals. I was leaking due to overload and all I was getting from professionals was do pelvic floor exercises, see physio blah blah. Anyway came to ahead when finally someone listened and I was catheterised. The relief was shortlived as I went from blood in my urine to catheter blocking due to heavy clotting. I'm finally having cystoscopies due to massive bleed and stay in hospital. My bladder looks a right mess. I'm just hoping it is just radiation damage and nothing more sinister. Don't be fobbed off with it just a water infection, antibiotics blah, blah. Make sure you get a referral to find out exactly what is going on. Good luck. Xx

[Salixitch in reply to Jimbo65]

Thank you. The more I read, the more it sounds like what I’m experiencing. They don’t tell you this might happen when they give you treatment!

[Jimbo65 in reply to Salixitch]

The information post cancer treatment was sadly lacking when I finished my treatment. And of course the NHS resources are now stretched far too wide and far too tight to follow up once your cancer treatment is done. Late effects clinics are now a thing and they have a lot of information, if you can find one near you. Or maybe even find one that's not and see if you can arrange a virtual appointment. Wishing you the best. x

[Dustyangel]

Hi there, I am 4 years post treatment for cc, had chemotherapy chemo radiotherapy and brachytherapy. Last year in January I had blood in my urine quite a fright I got, then the blood clots which made me unable to pass urine the pain was out of this world ! and when I did it was like a murder scene as it was like a dam bursting! Few trips to gyne I said it's not comming from there eventually after 3 trips to hospital I said please refer me to urology so they did. They did a camera test up into the bladder and could see quite alot of damage. So I had 6 weeks of treatment where the instill hyaluronic acid ,and I have not had another episode since touch wood! They also went down the uti route first but I knew it wasn't that as I had no other symptoms. Hope you are OK and would advise to be referred to urology.

[AlfredSaxon]

radiotherapy to the pelvic region can cause "radiation cystitis" the symptoms are passing blood in the urine, in some cases the passing of blood clots: your GP should know abou this condition. I have experienced it after radiotherapy treatment following removal of my prostate. There is a treatment that usually keeps it in check; the product is called HYACYST, its designed to treat this condition amongst others bladder problems. It has to be instilled into the bladder using a catheter, after having the process done in my local urology dept I am now supplied with the kit and do it at home at about 6 weekly intervals. You need a referral to a urology dept. Hope this helps as you can now tell your G P

the name of the condition

[Lyubov]

Sounds like radiation cystitis that my husband developed several years after salvage radiation of pelvic floor for prostate cancer recurrence post total prostatectomy. The bleeding went off & on for years, then the big clots, the several procedures including catheterization. Then total incontinence. Bleeding stopped after 40 treatments of hyperbaric oxygen therapy (HBOT). Still incontinent, though, with indwelling Foley & collection bag. Too many probings of the urinary system further damage the tissue. See if you can get HBOT the sooner the better is my untrained but experience advice. All the best.

[Salixitch]

just another question. In order to start considering this is all due to radiation - did you need to have a full ‘just need to check it’s not cancer’ work up first? Scans / re-referral to oncology etc? I find that all so triggering and difficult to cope with so I would really need to steal myself to go down that path now

[Bluebell86]

hi there, like yourself I am 9 years post 2b cervical cancer. I have also experienced gross haematuria (clots and fresh blood). I understand how alarming it is and that you worry it’s a reoccurrence. I called my gynea nurse first (not technically under oncology anymore but was always told to go back to gynea with any bleeding & I figured my medical history is too complex for a gp to have time to read (you never get to see the same gp). Although an urology issue they kindly referred me as a 2 week urgent urology referral due to my history but I had to wait 6 weeks due to the delay for appointments. I had a CT and a cystoscopy. The camera showed all the dilated capillaries (tanelgectasia) & I was bleeding during the procedure (very painful after but worth it to have reassurance of no cancer). I was advised to have a cystoscopy every 2 years due to the increased risk. I asked for a blood test form that I could take to my gp if I felt anaemic due to any blood loss. I would advise you to ring your gynea team at the hospital or ask your gp for an urgent referral to urology. It is more likely that it is radiation damage than anything else but given your history they should treat it seriously. If you had brachytherapy it is even more likely as you get a high dose in a concentrated area and your bladder is so Close to your cervix. I just avoid drinking too much fruit juice or wine and try to stay as hydrated as possible as this irritates the lining of the bladder triggering a bleed. A good gp should be well aware of radiation cystitis & I would allow them to just fob you off with antibiotics. There is a clinical care pathway for patients presenting with gross haematuria regardless of cancer history & once a uti has been ruled out it should be investigated. Sending my best wishes to you & hope you find some reassurance that is likely to be “another side effect” & nothing more.

[Salixitch in reply to Bluebell86]

Thank you for this reply. It’s very helpful knowing someone at the same stage post treatment is going through similar. I’m going to give the CNS a call and a discuss it then take it from there.

[Hidden]

I do get blood in my urine but not visible to the naked eye. Maybe speak to your GP further about your symptoms or possibly speak to a urologist. I wouldn’t leave it if it was me

[Salixitch]

So, I had antibiotics, which did seem to help ease some of the symptoms but then I had another day of bleeding on and off (no clots but visible blood of different amounts). It’s stopped again now. Saw the GP who dipped it (and sent it for cultures) but there was no traces of blood.

Long story short, I’m back under my original gynae oncology team, awaiting a CT scan and some investigations / appointments. I feel extremely sick as it feels like recurrence / something sinister rather than dealing with radiation side effects that I thought it might have been (obviously it still could be).

I’m assuming everyone else had to go through the barrage of ‘just need to rule things out’ with the terror that comes with it?

[3rdNettydoon in reply to Salixitch]

Thinking of you. Hope all has gone well for you. X

[Bluebell86]

how are you Salixitch? How did your investigations go?

[Salixitch in reply to Bluebell86]

I’m really good thank you. Had a horrible time of worry and endless tests and procedures but nothing other than radiation damage to the bladder was found thankfully. The acute flare up I had a few months ago has really calmed down now and I’m being careful not to trigger it all too much but if it comes back worse I have a treatment plan with my lovely team at the hospital at the ready.

[Bluebell86]

So pleased to hear that you have been reassured that it’s nothing more sinister, I completely understand your fear there because I was like you with that anxiety. Obviously sorry that it is damaged but at least you know the cause and sounds as though you are well cared for by your local hospital. Can I be rude and ask what they have recommended if those symptoms were to return for you (hopeful for you that things have calmed down and will remain that way 🤞). I do the usual of avoiding alcohol and acidic and spicy foods and my bleeding is only occasional a couple of times a month on average but my local hospital haven’t been forth coming with offering me any treatment so would be incredibly grateful if anything I can discuss should things get more problematic for me. X

[Salixitch in reply to Bluebell86]

Of course. They offered the treatment where something is inserted into the bladder to coat the lining and protect it. I think it’s done weekly and they teach you to do it yourself? I’m not sure what it’s called specifically but I’ve heard of it on here before.