Red patch / post cystoscopy problems

Hi Catfan,I’m sorry that your partner is in more pain than usual after cystoscopy.Red patches can be due to inflammation.I used to get them most years due to Interstitial cystitis.They would be biopsied and removed using diathermy.This uses electric current and heat to burn the patches off.There is a newer laser treatment now.Hopefully the catheter will be a temporary and they will see whether your partner can pass urine easily without it.I always found rigid cystoscopies worse than flexibles in regards to pain,difficulty passing urine.Let us know how things go.I hope your partner feels better soon.Love and best wishes Jane x

Thanks so much Jane.

Would they have treated the red patches while he was asleep or do they need to biopsy before they do that? At the last rigid a red patch was also mentioned but came back benign and there was no further treatment.

The catheter isn't too bad now he has accepted it and it has taken the pain away but he is worried about taking time off work so wants it out ASAP. They gave him 4 days of antibiotics although I am not sure there is an infection. 

A&E is not good at the moment. The first night we went, he sat for a couple of hours with no pain relief and was told it would be a few more hours to see a doctor. We left at 3 am and went back in the morning. 

I don't know if they will tell his urologist (same hospital) or if I should email his nurse specialist?

Love to you too Jane and hope you are doing well

xx

Hi Catfan,I usually had the red patches removed and biopsied at the same time under a general anaesthetic.I would imagine that the urologist would be informed but you could always contact the specialist nurse for clarification.In these days of Covid it’s hard to know what is happening in hospitals.Waiting around in A & E is tough enough without having no pain relief.I hope the catheter can be removed soon and that things improve.Love Jane xx

Hi Catfan

I had a rigid cystoscopy last Thursday, and surgeon siad she had taken a biopsy of a red patch[ she said this often appeaars after a course of mitomycin (so may apply to bcg too) and implied I should nt be too worried about it....

I have had st 1 g3 for about 2 years- 2 sets of bcg and recently mitomycin...unfortutanately they found a removed a 1 cm tumour last Thursday. They will continue to push me to have a removal , which I will resist.

Has your partner also been resisting having the bladder removed and what has been their experience re this? What approach/treatments have been applied.

I hope things improve.

BR

Pienmash

Hi Pienmash,

Thanks for your reply and I am really sorry to hear about your recurrence. 

My partner's history goes back about 18 months. When he was first diagnosed, they seemed convinced he had muscle invasive cancer - I think based on scans. He had a first TURBT then was referred to the University Hospital nearest to us for a meeting which unexpectedly was a discussion about whether he wanted a neobladder or stoma. There was no preparation for this so it was very upsetting. The surgeon agreed to a second TURBT although unsure if it could be done as tumour was located near the ureter and they thought it had spread. Anyway very fortunately the second TURBT was successful, and confirned p Ta so he opted for BCG and has had 12 of a recommended 15. He had to stop because of granulamatous prostatitis caused by the BCG.

Since then he has had a clear flexi and has just had this rigid which showed the red patch. There hasn't been any discussion about what will happen if he has a recurrence but his consultant was very keen on cystectomy at the start - I don't  know if this is the case with all grade 3 or because his was quite large possibly. 

My partner was absolutely dead against cystectomy and I am glad he didn't just agree to it as it wasn't necessary. I think he probably would agree now if it was presented as the only choice but at the start he felt it was not something he could live with and did not want major surgery. 

These decisions are so difficult and I am very sorry you are facing this tough situation and wish you well whatever you decide. 

Thanks Jane - very helpful xx

Yes...my guys keep pushing for removal , after the 2nd round of bcg failed...and they will continue to do so now that the mitomycin failed. I try and get credible stats to inform my decision going forward but there are so many variables and everyone is unique . I take some hope from Rily who had advanced bladder cancer but did not go for removal and has been clear for a number of years...my heart and head are still against removal but it does seem like a lottery..and then there is still a 10-30% chance of cancer returning post removal... Together with kidney cancer Ive been dealing with this for circa 3 years and today I'm finding it a little exhausting...hope things are going well yr side.

Pienmash.

Hello Pienmash, I have literally just returned from the hospital after having a cystoscopy. I have been suffering from cystitis as a result of BCG treatment. They are now sending me for biopsies on my bladder because there are some red patches. To be honest they were there last December on my last cystoscopy. There are no growths in there but I assume they want to make sure those red bits are just BCG inflammation and nothing else. I see a doctor in the clinic next week which was pre planned, so I can ask some questions. I will also have my annual CT scan which I think is due next month.

My urine was clear on my last cytology test on my previous cystoscopy so I'm keeping my fingers crossed and staying positive. I'm hoping the doctor can give me a prescription that can alleviate my discomfort. Take care.

All the best. Fingers crossed. I find out my biopsy results etc on monday. Nurse said if results are ok and as I am refusing bladderremoval at mo , then I am lkely to be put on a 3 month turbt/cyst programme. I have generally coped well with it all over the past 3 years , but sometimes I find it all a bit overwhelming , especially when people like bowelbaby are giving us v sad news...but i keep on keeping on. 

Hello Pienmash, yes it does become a bit relenting in the end. Like you probably fed up with being tied to the hospital. I know it's done obviously for our benefit but certainly takes it toll on your mind as well as your body. I'm sure we'll come through it. Take care.