Finished Mitomycin treatment

Hi all

It's a couple of weeks since my last mitomycin treatment. Six weeks one session per week at the day procedure unit. Can't praise the staff there enough. I was told that they were a "nurse led team" which apparently means that everything is controlled within their unit, including reception staff. 

Before my first session I had to have a blood test and take a urine sample. You have to withhold drinks 4 hours prior to the procedure. The nurses who do the procedure are very professional and I didn't find I had any discomfort at all. Certainly not as much as at that bloomin' cystoscopy unit! They drain your bladder first and then insert the mitomycin. Ideally you are asked to try and keep it in for 2 hours, and as I hadn't drunk anything for 4 hours, I didn't find it a problem. The first session you have to stay in the unit for the 2 hours so that they can check that you are able to pass urine afterwards, but the other 5 sessions it was just arrive, lay on a bed look out the window at the view and wait for the squeaky wheeled trolley to arrive, which in my case was never longer than 5 minutes after arrival. Procedure done and you get up get dressed and go home. I usually went to the supermarket afterwards but that might not be a good idea for some who may not feel they are able to hold as long! You need to be at home to urinate as you have to pour bleach into the toilet and leave for 15 mins before flushing. 

I had to take a urine sample to the path lab each week to ensure I didn't have an infection. I did this myself as I try to bypass GP surgeries these days and need to know that I am in control of the situation and to minimise the chance of things going wrong. After the first session, it all became quite routine and stress free as I got used to where I was going and where the toilets were and where I could park. The nurses and reception staff in the unit were so friendly it was like seeing friends again. I had five different nurses and I made a note to remember all their names .. as I'm terrible at that ... so here goes ... Amanda, Susan (Kathryn training), Jane, Jennifer, and Trish twice.

Side effects were frequency of urination and a cystitis type of discomfort. I didn't notice any real tiredness as such but then at my age I'm tired most of the time LOL ! I carry on with my normal routine (I have a dog!) After the 6th session the cystitis discomfort has almost disappeared but as normal, if I need to go I need to go! 

I go for the dreaded cystoscopy 17th July (it needs to be 6 weeks after end of treatment) to see whether it's done it's work.

If anyone wants to ask me anything about the treatment please feel free. Hope the above may be of help to some people who may be worried about any up and coming treatment. 

Female, 76 years of age.

Kathy x

  • Hi Kathy. A really good ,informative and detailed post. I'm sure it will reassure others heading down this path. Great to know you came through the treatment relatively unscathed. Good luck with your check up. Best wishes.

    Best wishes to All,   rily.

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  • Hi Kathy,It’s good to know you have got through your treatment without too many problems.Best wishes for your cystoscopy.Love Jane

  • Thank you Kathy for your post. Having read lots of posts about anxiety in anticipating medical procedures I’ve concluded that most fears are due to a lack of information which increases the anxiety. It’s refreshing to read of the detail of your procedure and I anticipate that this will go a long way to allaying fears in others.  I recall some years ago having a cardiac angioplasty . Just before the procedure I read an article in the local paper written by someone who described the event in similar and straightforward detail as you have used. This helped me greatly to follow the procedure calmly and without anxiety. I now approach the various procedures for treating bladder cancer with a calmness derived from knowing what’s going on, thank you. John.

  • Thanks    I agree that detailed info is a big thing for peace of mind and that even the leaflets you get from the NHS are not correct in some areas. For example, in my leaflet it said you would have to keep the mitomycin in the bladder for an hour ... which wasn't correct. Also I had the impression that I would have to stay in the unit for several hours each visit ... and when I was told by the first nurse that I could immediately go home straight after treatment from the second visit onward, it was one more thing I didn't have to worry about. Also the nurses are very matter of fact and extremely well versed in the procedure. Best wishes for any future treatment x

    Thank you riley and winkers60 for your replies and for your continued help for people joining this community x