Topic: UK patients?
would any of the UK patients (and caregivers) be interested to form a sub-group or any other way of regular communication?
We will probably all have the same problems such as limited access to treatments which are standard in US and Europe, NICE guidelines which question treatments which have been approved in other countries, lack of experience in medical staff with this kind of cancer, NHS funding problems (for interventional radiology, especially in Scotland), limited access to trials...
Talking from own experience: could you believe that it was me who had to investigate suitable treatment options to get our oncologist to look into them? Some treatments the oncologist had never even heard of... (not funny ones, just standard procedures in other countries)
Could you believe that it had to be me (and I am not a doctor!) who had to look into side effects and risks caused by medication which my husband was on for a long time and make suggestions to the doctors to change to medications with less severe side effects. Some stuff he's been given over a period of many months (some even years, although should not be used over a period of 10 days) are metabolised via the liver and caused problems which now can be controlled with a much less harmful drug...
I think it could all help us if we compare our situations (what stage, how treated, which complications, how were they treated, alternative treatments to control side effects of for example pain relief drugs etc.).
One major problem is (especially in rural Scotland) that you might have an oncologist "in charge" who is supposed to oversee all treatments you get but he might be far away and you cannot consult him when you experience any problems. So if you have major side effects to a treatment it's the GP you see who is hopelessly overchallenged by making the right decisions due to a lack of oncology background... a vicious and sometimes life-threatening situation