My dh just phoned from hospital - bladder cancer diagnosis

[scared1a]

Hi,

I've just had a short conversation with dh who was newly diagnosed with bladder cancer.
I'm so scared for him.
He's 46. We have a young child. He works a physical job.
He said he'll tell me more when he comes home in a bit, but I'm just so anxious.

Has anyone had experience with this? I've read through the NHS page but still not sure what to expect.

@scared1a It’s shocking that you are having to wait like this. We live in Herts and weren’t happy with the care near us (it wasn’t lister) which is why we went to the Royal Marsden in London. I really recommend getting in touch with the Marsden and asking for their advice. The bladder cancer team there are incredible! They weren’t happy at all with the care plan our local hospital was suggesting and explained everything so clearly to us. The care for the last 6 years has been brilliant.

I don’t know anything about UCLH but worth looking at too. The best thing we did was getting a second opinion.

Do they provide NHS care or only private?

@scared1a Hi, I'm sorry you've had this news. I know Lister well as I was treated for breast cancer there a few years back. They have a dedicated Macmillan unit which is amazing. I'm really surprised that he's got to wait five months for surgery?! Has he been assigned a nurse? I think I'd be asking for a meeting and going with him. That doesn't sound right to me at all. My own treatment was seamless and quick and that was during the pandemic! I would also ask about the possibility of being referred to another hospital. As I say, I am surprised at this.

Secondly, my neighbour was diagnosed with bladder cancer 3 years ago and made a full recovery.

You can ask for a second opinion on the NHS

@scared1a The royal marsden provides both nhs and private care. My husband is under nhs care there. The consultants are the same on both the nhs and private departments. The private care has its own waiting rooms and wards. But the treatments are the same.

He will likely have a TURBT (transurethral resection of bladder tumour) which will be a 23 hour bed recovery. They aim to book this within 31 days of diagnosis. He may then have Mitomycin in the ward post op.

Then it depends on his results which will be discussed at MDT for what treatment he may (or may not) require

My dad had his treatment at UCLH the team and consultant were amazing

@scared1a thank you- that's reassuring to read. I'll see if we can get a meeting. May be, it's different because of it being bladder cancer?

Do you know if he self referred? Thank you

Thank you. The only thing we have so far is a TURBT leaflet. Dh also mentioned another scan in the next two - four weeks before that?
He was told the op waiting list is about five months.
We would all feel so much better if we just had some dates booked for whatever is next.

My DF was diagnosed in late November 2022. He started chemo in February. Then had his bladder out in May 2023.

Edited to add that DF had a failed TURBT - due to the location / size of the tumour.

The bag took some getting used to but he is doing brilliantly. His consultant told him that it is often very slow growing / spreading. Hence a slightly lower surgical priority than others.

The OP took 7 hours - he had 2 days in ICU and another 7 on the ward.

Just wanted to tell you a good news story that included a long wait for surgery that had a great outcome.

Hope you are doing ok.

No he was referred there by his GP there wasn’t a long wait he was seen under the 2 week rule for his first appointment then various scans he has the TURBT and was in hospital 2 days to recover. Then was n to the immunotherapy. Now on maintenance of 6 week cycle and regular scans. The hospital have kept him informed all the way along it’s just getting him to update me as he doesn’t like to worry me!

We now have a provisional date for December for the TURBT.
Thank you for everyone's kind responses.

Not too far away then @scared1a. I hope it all goes well . Thinking of you both

Well, I hope for both of you that he has a good outcome. Best wishes.