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?