Hi everyone,
I came across this forum by chance and have read a lot of the threads. What wonderful people you all are!
I had my TURBT on 14/06 after a long time waiting due to many issues with GP hospital etc and have not had a very good experience. I had no idea I was having this as it was not explained to me. All I was told in the 3 minute conversation I had with a doctor in the hospital the next day was ‘it went well, I think we got all the tumours, you can go home now’ first time I knew I had a TURBT was when I read my sick note!
I have got my appointment on Thursday and have to say feel a bit disheartened reading on here that I may need to have another one before I get any result.
I would like to ask if anyone could let me know if going privately for any follow up treatment is recommended.
any experiences would be good to hear about.
trying to stay positive and hoping I may be one of the lucky 2%!
Many thanks
Yes I have read your post on here and I think I will stick with the NHS as apart from extremely bad communication so far I think they are all doing the best they can for me, finding this forum has been amazing and feel for everyone going through this. I feel now I will not be so devastated if they say I need a second TURBT. Good luck with your results.
Hi Sharon
Sorry that you’ve found yourself here. I would basically echo what’s already been said on this forum. Look at the MacMillan information for treatment options for different biopsy results; benign, low grade, intermediate grade, high grade, high grade with CIS (Carcinoma In Situ). Write a list of questions for each of these, so you are going into this meeting prepared, and most importantly bring someone with you - 2 people listening to the information given is extremely useful!
As regards private Vs NHS, my gut feeling is once you’re on the ‘cancer treatment train’ there is very little difference in timescale. I started out a couple of months ago on both an NHS (quicker for the CT scan) & Private track (quicker for cystoscopy & initial TURBT); the difficulty I had was that the 2 tracks don’t talk to each other, which just added another layer of stress that you can probably do without. It’s worth noting that if you do end up going down the BCG route that this cannot be given privately anyway.
Best wishes
Gareth
Hi Ade, that’s so useful and hope your BCG treatment is successful. Yes I think once Thursday has happened I will have so many questions. My main one at the moment is when can I start jogging again which I think is longer than I had hoped x
Hi Gareth,
BCG can definitely be given privately as I've had 12 instillations on private health care so far with my next batch starting very soon.
However I agree that there probably is not a great deal of difference with cancer treatments time wise. On my 1st TURBT I probably had the operation 3 weeks in advance of the NHS. I only know this because the NHS gave me a pre op assessment appointment two weeks after I had my private operation.
For me however there are some differences that help me due to other health issues.
For example parking, our NHS hospital often has queues to get in so means getting extra early to get to appointments.
There also isn't a big wait (in the waiting room) . I take my father in law for his prostate consultations and we often have to sit around for hour+ before being seen.
I've never stayed in a NHS hospital, but visit others of course. The heating appears to be set at sauna setting each time. I hate the heat, so having my own room means I can keep it cool.
Again these are only small things, but helps my journey a little bit.
Again it's personal preference, I would have no real issues having to use the NHS if needed.
Take care.
Trevor
Hi SharonO,
I had my initial treatment of cystoscopy and then TURBT under the NHS but then went private for everything else as I have the luxury of health insurance from work and the wait for BCG treatment was excessive and I could get it quicker by going private.
I've had a further four TURBTs, eighteen doses of BCG, seen two surgeons to discuss potential for RC and other options, numerous cystoscopies and a CT scan and I think for me the main advantage of private provision is the ability to choose what suits you best - location, timing and communication.
My consultant is Amr Hawary and I cannot fault the treatment I have received from him and what I particularly appreciate is that he is always available to answer any questions or concerns that I might have.
I would recommend going private if that is an option available to you.
Good luck
Andy
Thanks Trevor
Really interesting; the consultant who performed my TURBT told me that BCG trehad to be NHS - obviously he was mistaken! Thanks for the information.
Best wishes
Gareth
How strange, maybe it's due the specific private hospital not doing this procedure.
I guess like a lot of things it can be a postcode lottery.
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