Stage 4 bowel cancer

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hannahrose

Advice on moving hospitals

Hi there,

I've been lurking in this forum for a year or so now and its brought me great comfort and knowledge and so firstly - thank you to all of you!

I wanted to seek some advice on moving hospitals but first a quick bit of background. My partner was diagnosed in May 2020 with stage 4 bowel cancer at 28. That year, 10 rounds of Folfox shrunk his bowel tumour to be operable, his liver mets to be ablatable and zapped a lymph-node met.

In May last year, 2021, scans showed a number of small lung mets. Until recently Folfox was successfully treating these too. This has now stopped working and he'll be moving to Folfori very soon.

His oncologist has strongly recommended adding on Avastin. At his current hospital, UCH, this is almost £1500 per cycle (£3000 per month). His oncologist has asked Royal Free to take on his treatment, which would reduce costs to £300 per cycle (!!).

Royal Free is actually closer to us and obviously moves us into something much more affordable. But we have just heard that Royal Free will not take on his case on the basis of needing Avastin alone.

I know there is lots of discussion about Avastin but I wanted to see if anyone had any advice about moving hospitals in general (is there any criteria or additional way to explore this except through your oncologist) and if anyone had heard of or overcome this feedback we're getting that Avastin is not a good enough reason?

Safe to say if we can't move, we can't afford it! So any advice big or small, directly or indirectly related is really appreciated.

Thank you so much, Hannah

Clarice08

Hi @hannahrose , I wanted to move hospitals for a different reason. The process is that it has to be done via your GP. As far as I understand it, you have the right to change hospitals, and your GP doesn't much care as to why.

Now the bad news: it took me a whole year of frustrating back/forth to achieve getting transferred to a different hospital. Someone else on this forum (sorry I can't remember who) had a similar experience and in the end gave up. I'm not saying that it will be so difficult for you too - maybe you'll be much luckier. I just thought I'd mention my experience so that you can plan ahead.

mountainwoman

Hi @hannahrose, I don't have any experience of moving hospitals but I have had all my chemotherapy at the Royal Free. I read the avastin is cheaper there because they have a private wing so somehow you only have to pay for the treatment. I met someone who got their care moved there so they could have the avastin at the lower price. She paid for a second opinion with Daniel Krell (oncologist at the Royal Free who also does a lot of private practice) and then he agreed to take her on his nhs list. Can you ask your oncologist to arrange a second opinion, you should be able to get one on the NHS. Or if you live nearer to the Royal Free can you not ask to be transferred on the grounds that you are closer?
I think there have been some threads on avastin and prices. If you use the search box at the top right hand corner you might find some more information.
I hope you manage to find a solution. It's a very unfair situation for you.
Take care

HH79

Hi @hannahrose the FB group ‘Living with Stage 4 Bowel Cancer U.K.’ will have info on this as seen quite a few move hospitals :x::x:

Baxter2

Good morning @hannahrose and a warm welcome to the forum. I'm sure you'll find us a friendly and supportive community with lots of knowledge and experience to share.

I'm so sorry you find yourself here being so young but can see you've already had some helpful input. I also think your partner should join the living with stage 4 Fb group and I believe there's a caregivers group too.

Many have second opinions and move hospitals including me. Have a read of my profile if you've a spare 10 mins! 😂

Sending lots of love you both,

Karen 🌸🌼🌺💐🌷

Loz

Hi @hannahrose, I successfully moved hospitals based on location, with the new hospital being closer to home. All was done via the two hospitals, my old onc wrote a referral letter to the new hospital. A bit of chasing via their secretary and it all worked out ok. GP was not involved at all.

belinda66

@hannahrose I looked on the government website after I read your post and it said that you would need to contact your present hospital or the Clinical Commissioning Group. Interesting that others have gone via the GP.

I wanted to change hospitals before chemotherapy but the staff at the hospital I was under, said it would take too long and could delay treatment. I don't know why it takes so long but anyway, I stayed where I was for chemotherapy which was a bit fraught as I'd put in a complaint about previous issues. After chemotherapy, I went to a different hospital further away but it was only for check up appointments so that might have made it easier. It wasn't a difficult process to change once it got started.

hannahrose

Thank you all for such thoughtful and incredibly helpful replies! My partner is due to speak to his GP tomorrow and current oncologist again on Wednesday and so it sounds like both will be useful to explore and perhaps pursuing both routes as much as possible might be valuable.

To @Clarice08 the honest advice is incredibly helpful - it is good to be prepared and s far we've already started to see this might be a journey which requires patience!

To @mountainwoman thank you for sharing such relevant experiences, I've noted down Dr Krell's name as having quickly searched him on this forum it looks like he is an incredibly compassionate oncologist.

@HH79 and @Baxter2, Bobby has joined the FB group today and much of our afternoon went to reading so many incredible stories, the power of sharing our collective knowledge is quite something! It's already helped our understanding of moving hospitals and alternatives to the Royal Free. Thank you for the steer - and for both sharing your stories on this forum, which I have drawn much strength from.

And thank you @Loz and @belinda66, it is so good to hear that changing is possible at all even if different needs bring us to that decision.

After a weekend equipping ourselves with information and examples we hope over the next week some opportunity will emerge. Thank you all :x::x: