re: any advice on getting things moving more quickly?

Posted in: My story
Posted on: April 28th, 2012 by Kate120 View all 20 Comments

Hi,

I was told some time ago that my most likely diagnosis is cancer of unknown primary (CUP). Since then something showed up in my tonsils on a PET scan, so I’ve been referred to the head and neck department. They don’t think it is very likely that my tonsils are involved (my only other sign is in my groin lymph nodes) but they are being careful, which of course I’m glad about.

 

The problem is that I’m now 8 weeks on from my diagnosis (4 months since the initial referral). By the time I see the head and neck consultant it will be 10 weeks and I still won’t be getting treatment, just another investigation. I’m on my 4th department and each time I’m referred on I seem to start again at the back of the ‘seen in 2 weeks’ queue.

 

The delay is very frustrating and it is quite hard to get a straight answer about whether I should be worried about it. When I ask I’ve been told that at each stage they will be weighing up the cons of delay with the pros of identifying the primary site and making sure the treatment I get is the right one. Of course I’m glad that they are doing all the possible tests and really trying to track it down, but I’m getting very anxious about the delay.

 

Any tips on getting things to move a bit more quickly?

 

Anyone be able to give me an idea of how long it took them to get to the point where treatment started? Were you referred to a CUP specialist once they thought this was the likely diagnosis or not until they had been through every possible test?

 

Thanks!

 

Kate

 

Just been diagnosed with CUPS

Posted in: My story, Treatment
Posted on: March 2nd, 2012 by tortillatout View all 5 Comments

A big shock to us as some 4 weeks ago I was fine and had never ever heard of this type of cancer diagnosis! Started chemo on Monday and we are fighting it with extreme willpower and family friend support. Early days for me, but whatever I can do to help beat this affliction for me and others we will do! Anybody want to chat just let me know – we are in Poole Oncology unit at the moment where they are doing a wonderful job to support and manage this unknown predator.

Australian advocacy site for CUP

Posted in: International alliance
Posted on: October 14th, 2011 by John (Moderator) View comment

Good news that Jane has launched her website http://www.actiononunknownprimary.org and we wish her every success.

Conference

Posted in: Change
Posted on: March 15th, 2012 by John (Moderator) View all 4 Comments

Only 40 days until our second international conference. The programme is now finalised and we have about 120 delegates from a number of different countries signed-up and I expect more clinicians to sign up at the last moment (if it follows experience of the 2009 conference, which was the first conference ever held devoted to CUP). It is an important event in encouraging the sharing of expertise and research. This year we have a particular focus on Australia – a country that I think is leading the way in terms of CUP research and patient experience. I’m pleased to report that we have 2 members of our Meeting Space Group sitting on expert panels to represent the views of patients and carers. We have others in the audience but if there is anyone here who wants to come and hasn’t registered they need to contact me asp. The patient voice is incredibly important in stopping clever oncologists and researchers forgetting that it is all about patients! Have a look at the programme and all the details here http://www.cupfoundjo.org/conference/index.html