Hello, Newly Diagnosed

Many thanks, I've dropped Dr Metcalfe a message and hope that his expertise might help me to get the best and most appropriate treatment I can.

About my stent, do you think I should add here or start a new thread?

A new thread I guess? You could ask if anyone else has had a stent and tell us the story of yours so far?

B.

You can ask your oncologist for a second opinion. They are very used to it and do not bat an eyelid.

if you do your research you can ask your oncologist to refer you to another doctor.

Rob Metcalf in the Christie Manchester specialises in acc. I have been to see him as have many others with acc 

good luck 

Ruth x

Thanks so much Ruth.  I've had a reply from Dr Melcalf's secretary and now just need to get someone to refer me for him to consult - I feel a bit pillar and post right now but that's probably because I'm seeking this ahead of an oncology appointment.  I think I should get some lunch!!!

Thanks again. x

ruthjpMowerMan I've had a chat this afternoon with the local hospital who have said I'll receive treatment at the regional hospital and my case is to be on next week's MDT schedule.  I asked about who to speak to about a referral to Dr Metcalf because of his experience with ACC and in summary I didn't get a good feeling.  He thought it might be helpful if I have an appointment to put my case face to face (i.e the person I was speaking to got what I was saying but that the 'guidelines' and bosses might not be so keen).  So we shall see.

Aside from ACC being a rare cancer in a rare site and wanting to see someone with significant experience is there anything you know of that I can add if I need to be persuasive?  Honestly, I don't want to travel and stay away but if it gives me a better 1st shot at this then it's worth doing.

Rob Metcalf ‘s expertise is drug trials and profiling tumours.

where are you living ?

London has 2 experts in acc at the Marsden they are Kevin Harrington and Chris Nutting. I have seen them both.

you can see Chris Nutting for a  private consultation for £200.

I did go and stay over night in Manchester and have seen Rob Metcalf a few times .

if your tumour is inoperable I expect you options are photon or proton radiation 

The NHS only fund proton therapy for people under the age of 25.

Proton is more targeted with less side effects than photons affecting less normal tissue.

i researched into proton therapy and there are private centres in this country now. At the Christie and at the Rutherford Centre inNewport Wales.

ihad 6 weeks photon rad10 years ago and I have been offered more for my metastases which I will have later in the year.

you may want to wait and see what the MDT decide to offer you.

you could also ask if a biopsy is possible to profile your tumour and discover how aggressive it is.

good luck 

Ruth x

Thanks for all of this information Ruth, it's all really helpful to know.

I've been increasingly unwell due to an infection which has been brewing after the stent was fitted and recently prescribed antibiotics which thankfully seem to be working.  

Meanwhile, another biopsy is required so that a definitive diagnosis of ACC can be made, which will happen next week and then I'll get an appointment with the oncology doctors to discuss management/treatment options where I'll be able to ask about specialists etc.   

I'm really grateful for the information you and Mowerman have offered.

Sorry you needed antibiotics but good it is improving. You are going through a lot at the moment.

if you contact Rob Metcalf secretary they will be very pleased to get a sample of your biopsy and they can profile it for you and see what mutations you have which may be treated . I had my tumour sample sent to America ‘s Foundation One  to be profiled .

Stay strong xx

Sorry for the delay - yes, I agree with everything Ruth says :) I think if the local MDT are a bit hesitant about you being referred to Rob Metcalf, you could explain that it isn't instead of what great work your local people are doing, it is in addition to... Rob is doing amazing work in DNA profiling tumours, clinical trials to find drugs which ACC responds to etc, which no local centre is offering.

The infection sounds horrible :( That was what actually got my diagnosis to happen - my trachea was 60% blocked and then I got a chest infection which I just couldn't clear. It was the straw that broke this camel's lungs. Or something. I'm glad the antibiotics are doing the trick.

Let us know how the appointment with the Onc goes.

B

Mower man is very wise. Rob Metcalf is well know and good to have him on board as well x