How do you identify the best oncologists (for breast cancer and generally) in the UK?

[couscousandveg]

I went to My GP with a breast lump a few years ago but was told it was a cyst and not to worry. It's always been there but I went back a few months ago and was again told it was almost definitely a cyst but I was referred to the breast clinic just in case. The breast clinic told me it was stage 3 cancer and my prognosis is now much worse than had I been referred for tests when I first went. I'm being treated on the NHS but don't trust them entirely given our history (and given my history of how awful they've been with some of my other conditions). I'm considering private care but just wondered how you find out who's the most revered (breast cancer) oncologist in the UK? No guarantee I'll be able to afford them but I'd be interested in knowing who they were at least. Or is there a top performers list somewhere?

That's awful, your head must be spinning. I'm not going to tell you not to worry but I was grade 3/ stage 3, 11 years ago and no signs of recurrence - I hope it helps a teeny bit to hear that. Remember it was your GP who messed up, not the breast care team. My lot were genuinely outstanding. A friend who's a doctor told me going private would really only give me nicer waiting rooms and a private room for ops and looking back. Her take was that the doctors are often the same, some just have a private practice on the side. Where do you live? Big teaching hospitals tend to be at the forefront of research and treatment. There's so much on line now to reassure and help you check you're getting everything you need though. I hope things fly for you. None of this is easy. Just take it one day at a time xx

I'm near London. My team seem good in many ways but there are several things I've read online about how you can improve your prognosis that they've never even mentioned which worries me. I'd really like to even just have a single consultation with a top doctor for reassurance that I'm doing everything I can.

So sorry you've been through this hell too but that's great you've not had any signs of recurrence!

You sound very similar to me. I always had to understand everything too. So much so that one of the registrars asked me if I was a Doctor!

So.. I'd say make a list of questions, include all of those treatments and ask your team to explain why they're not using them. You might find your cancer just doesn't react to whatever you're reading about. I bet you know this, but treatment should be finely tailored around whatever's fuelling the tumour. If they can't reassure you, ask for a second opinion. Go to a big teaching hospital with a track record in research.

Have you got a partner or best friend to take with you? I mean someone who understands the science and can keep up as you work it all out. My DH was lovely, but nowhere near as good at all of that as my best friend. She came to loads of consults and scans with me.

Message me if you want to. I definitely found talking to those who'd been through it all really helped. You can do this. Seriously you can. x

Not breast cancer, but my dad has had absolutely outstanding and pioneering cancer treatment at Mount Vernon Cancer Centre in Middlesex. It is a centre of excellence for cancer treatment and patients get referred there from all over the country.

I'm so sorry that you are having to deal with this

My consultant also told me that going private just meant nice room and food, but an ambulance ride away if things went pear shaped during an op, reaction to chemo etc. I now have private medical insurance through work and it is a reassurance given current pressures on the NHS but my NHS treatment was beyond parallel. Sorry to hear what you’ve been going through xx

Do you have private insurance? Because if not, cancer treatment is likely to be unaffordable as a self-funder.

All oncologists work out of cancer centres and care is very uniform - what treatment you get is going to be the same according to what stage you are across the country because that is what the evidence says is the best.

You can always ask for a second opinion on the NHS if you want - or just ask your questions about the things you have read on line to your breast cancer specialist nurse, it's what she is there for.

If you can afford it 100% go privately. Tje treatment will be broadly similar but it’s just smoother. All your appointments are with your chosen oncologist and not with their team. You build a rapport With them and they get to know you. You also tend to get scan results much much quicker, often same or next day which is a massive plus locally. Privately the London clinic, royal Marsden, London oncology centre all tend to be preferred locations for private care

The thing is if you go privately you will very likely see the same consultant that you will see on the nhs. Your plan of treatment will be made by the MDT ....not by one specific person.
Your GP was in the wrong not the breast care team....they should have referred you under the 2 week rule. Good luck going forward 🍀