Thought I’d share my experience of bladder cancer diagnosis and treatment over the last 9 months.
In November last year I noticed what I now know was a 1 drop haematoma when visiting the toilet. After testing at my GP I was referred to my local hospital for cystoscopy examination. This revealed a tumour and abnormal cells in the bladder lining. Two weeks later at a meeting with an urology consultant I was scheduled for an urgent TURBT to remove the tumour and take samples from the bladder wall. Four weeks later I was given 10 days to consider two treatment options to consider for very high risk bladder cancer.
Option 1 was to start immediate BCG treatment. Option 2 was a robot assisted radical cystectomy which would remove bladder, prostate and associated lymph glands. Consultant gave me all relevent information and answered all my questions about living with a stoma pouch etc. I am in my late 70’s but fit and active. I am also in contact with a friend who went through repeated BCG over a period of 3 years but still resulted in a cystectomy. I opted for option 2 with the bonus of ridding myself of an annoying up several times nightly prostate.
In January this year I had the surgery which was major and debillitating, but by March I was out and about and resuming some gentle exercise with daily walks. Stoma nurses got me organised with monthly delivery of all the necessary gear and I was sleeping through the night for the first time in years. BUT and there’s usually a but when things seem to be going well. On my next meeting with the consultant he informed me that biopsy reports indicated I needed to have the remaining part of my urethra removed by further surgery. This did not take place until the end of May as he was reluctant to schedule further surgery too soon after the last. This was just a one night hospital job and back to normal early July. Had the check up last week and given the all clear. Further bloods and scans needed February 2025 but was reassured everything that might cause further trouble is gone and I can get on with my life.
That’s my experience and in spite of everything you might hear it’s thanks to wonderful and timely NHS treatment throughout. Sorry it’s a long read but hope it’s of interest to anyone going through same.
Hi Stapled and a very warm welcome to the Community but sorry to hear about your diagnoses and your story so far.
Navigating the cancer journey can be such a stressful and challenging time….. but your story could be a great support for other people who have to walk the ‘exact same' cancer journey would help a lot. (I have a completely different cancer).
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so could I recommend that you join and put up a post in our dedicated Bladder Cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions, to give and get support.
To connect in with the group please click on the link below…….
…… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post]or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community.
Hi Stin and a warm welcome to you but sorry to hear about your partner.
As I highlighted we do have a dedicated Bladder cancer support group where you will connect with a wide range of people who are or have navigated the same journey.
As for the practical and emotional challenges of supporting your partner and indeed yourself you may benefit from joining and posting in our……
……. support group where you will connect with a wide range of members navigating the exact same support challenges.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
As the very best.
