Advice Please wh

Hi Pip,

Wow, what a ride so far.  I know you said that it has spread away from its original site, but my brother in law had the same original cancer as you, which is why I am replying.  He was treated by an amazing surgeon in London (which happened to be where he lived), who is a world specialist in his field.  It is a bit early for my brother in law to be awake yet but I will contact him this morning and ask him who it was, then get back to you.  Even if this man can't help you personally, I'm sure he will be in touch with other people who at the top of their field, and may be able to direct you to them.

Best wishes,

Josie

Thank you x

Hi

I’m sorry you have found yourself here but hopefully you will get the name of the surgeon from Josie.

I don’t know anyone with your type of tumour but I was going to suggest the Royal Marsden in London, who have a great reputation for cancer treatment.

Aso, please use the Macmillan helpline and the forum here for support for you and your family. Macmillan are fantastic.

Good luck and best wishes.

Fiona

Hi Pip,

I have just talked to my brother in law and he says that his surgeon has retired now, which is unfortunate.  He also said that his treatment was at a specialist head and neck centre (UCL in London), so his suggestion was to talk to Macmillan and find out if they can suggest an equivalent specialist in brain cancers.

Also, there are two groups (I think) that deal particularly with brain tumours on the macmillan site, so it may be worth posting on there to see if anyone can suggest good people to see or hospitals to approach.

With all best wishes,

Josie

Hello Pip

Have you asked to be referred to a specialist hospital like the Royal Marsden?

Coincidentally I was referred to the royal marsden about 4 weeks ago, following my latest MRIs which are showing some further disease progression. I am yet to hear anything but fingers crossed it will be soon! 

Thabk you xx

Hello again Pip

How did you get on at The Rooyal Marsden?

Hi

It didn’t bring any progress to be honest. They just advised to carry on with checks (MRIs) but agreed there are no further treatment options currently. 

Hi there Pippa 

Thanks for replying. I wasn’t being nosey. It’s just that my wife also had ACC parotid gland diagnosed a few months ago. Stage T4aN2M0 and had gland and facial nerve resected. Radiotherapy week 5 currently.

Wishing you all the best

Hi, I am just wondering if you had been given any idea of the frequency of head and neck scans and also lung scans. My wife has a similar journey to you and has has first baseline scan following total parotidectomy (and nerve graft) plus 30 sessions of radiotherapy. 

Thanks for anything you may be able to say