Pain

Hello Lingdilong and welcome to the group. Sorry to hear you are having some pain issues. It is not uncommon while waiting for a TURBT. I had severe back pain while waiting. The waiting is something we never get used to. Things never go as fast as we like, and of course, the Covid situation does not help. Ct scans are routine just to check nothing else is going on and it gives them a bigger picture of what they are dealing with. When you have your op, they will take some biopsies and then unfortunately another couple of weeks waiting for results. If you don't hear anything, it is always best to give urology a ring to give them a nudge. Lots of experience here and many of us have been through it. Feel free to ask anything you like. Best wishes.

Hi Lingdilong, glad you you've found our merry group. It's rotten when a diagnosis comes just before a holiday and poor patient is left waiting. Everyone in this group will tell you the waiting is definitely the worst. I haven't been aware of pain specifically linked to my bladder cancer but I do get groin pain and down my legs which I have always thought was sciatic and linked to an old spinal problem. I just swallow some paracetamol. Who knows, frankly most of me aches at some time or another, I think it's being 73  

I have always waited about 30 days between the identification of a tumour and the subsequent TURBT. I think this is standard for NHS. Currently despite COVID my hospital is staying on top of new cancer referrals. Hopefully you will get a date soon. The op itself is generally straightforward and nothing to worry about. Afterwards medics will tell you the stage and grade you have and discuss treatment options. Were you introduced to your Clinical Nurse Specialist at the meeting when they told you about your cancer? If so this person can become your best friend. Whenever I get anxious about any symptom or some terminology I don't understand I phone my CNS for help.  She is a marvel. Hope you can put worries to the back of your mind over Christmas. Sending love x

Many thanks for getting back to me so quickly! It’s great to have someone who’s been there to ‘talk’ to.  Really appreciate it.  

Thank you Herothedog.  Appreciate your prompt reply. I know what you mean about the aches and pains - which ones are associated with what? Old age creeps up!! 

Hi Lingdilong,I was in pain but already had a painful bladder condition.Waiting for results is always stressful but once there is a plan in place people tend to feel less anxious.The turbt procedure doesn’t take long and they will take biopsies.A multi disciplinary team made up of various medical professionals then meet up and plan what treatment you will need.It all seems overwhelming and scary at the beginning but there are lovely people here to answer your questions and lend support whenever you need it.Love Jane x

Hey Lingdilong, I really am the absolute worst for pain.  Just before a TURBT I get all sorts of stabbing pains in & around that area, & back ache too.  For me I think it's the stress hitting out as as I can go a full 6 months without anything, but just before the TURBT the mind goes into overdrive & that's when the twinges begin.  If you listen your body talks to you, it's quite clever really.  This could be your body saying we just need to sort this rubbish out now.  The waiting & our thoughts are our worst mares, we get you & we're all here for you. Hope you don't have to wait too long for the scan results, I'd give it a week or 2 & ring them X

Thank you for taking the time to send me some encouraging words.  It really is appreciated.  I’m just at the beginning of the journey and at the moment I haven’t got a map!!! Good to know there are people out there who are going through or have been through the same thing.  Take care x

Hi Lingdilong , I too have just been diagnosed with bladder cancer and am awaiting TURBT. I had some low grade pain in that area before the diagnosis and assumed it was to do with hemorrhoids or ulcerative colitis that I suffer from. Once I got the diagnosis I was worried that it meant the cancer had spread from my bladder especially as the cystoscopy showed the cancer had calcium deposits on it meaning it had been there for some time . My GP reassured me that my blood results, physical exam and lack of other symptoms (I'm still mobile & active, no weight loss , no swelling etc.) meant this was unlikely . I've got CT and MIR scans booked within the next 2 weeks when they will be able to tell more. It's been reassuring to read some of the responses to your post that pain prior to TURBT isn't uncommon as I thought the only sign of bladder cancer was blood in urine and anything else must be something different. 

All The best. 384

Hi Random384 and welcome to the group. Lots of varying experiences here, so usually someone will be able to answer any questions or concerns you may have.. Best wishes.

Hello Random384

Whilst I’m really sorry to hear you find yourself in the similar position of a recent diagnosis, it’s also reassuring to find people experiencing the same thing.  Interestingly, over Christmas when we were luckily to be able to have small family celebrations I actually managed to almost ‘forget’ about the big C and didn’t really experience much pain! Although the pain I had felt was certainly real, it makes me think that some of it is definitely in my head! 
After 2 weeks of waiting for scan results I’m getting desperate to move things on, I wish the festive season was over and the hospital could get in touch.  I’m hopeful that next week should bring news, fingers crossed I’ll have a TURBT date sooner rather than later. 
Keep in touch.

All the best Jan