Family member has cancer - questions to ask the doctor

[gloucestergirl]

A member of my husband's family has a secondary brain tumour. First it was in the kidney, then spread to the brain. This is the second tumour in the brain. The first was removed, but this second one can not be. He will be treated with both radiotherapy and steriods.

The treatment so far has been very slow and my husband's family have not had much information given to them. The problem is that they are very shell-shocked and it feels as if they aren't given being given information as they don't know the right questions to ask.

Another relative is going in as support and to try to get the full picture. So I am asking, what questions would be good to ask to understand what the hell is going on?

[Antidote]

I'm sorry to hear that your husband's relative is gong through this.

Can you be a bit more specific about the kind of information that they might want? Then I'm happy to suggest some questions.

[gloucestergirl]

Thanks! Prognosis, what type of cancer, how much will the radiotherapy and steroids reallt help? They don't really know anything and don't seem to be being told anything.

[Antidote]

OK. I'd suggest they make a short list, maybe 5 'big' questions and try to get those answered. Do write the questions down!

I'd suggest going in and letting the consultation start, and the doctor will probably ask 'How are you?' or 'How have you been?'. That sort of thing. At that point I would suggest they mention that they have a few questions about what has been going on, and could they ask them now, or wait till the end of the consultation.

From what you have said in your initial post it sounds like this is a kidney cancer that has spread, so the emphasis of future medical care is likely to be on symptom control and maximizing quality of life rather than trying to cure the disease. I have misunderstood them I'm sorry.

Please be prepared for quite a lot of the answers to be a bit vague. Questions about prognosis are very difficult to answer and no-one wants to be too definite and get it wrong.

I would suggest the following might be good questions to think about asking:

1. Are they certain that the brain tumours are secondaries from the initial kidney cancer?
   
2. How long do they expect the radiotherapy and steroids to take to work, and what effect are they hoping to see (i.e. how will they know if they are working)?
   
3. What is the plan for future care: will there be more routine scans, are there any more treatment options?
   
4. Is there a key worker / cancer nurse / named person who they can call if they have more questions or if symptoms start to get worse?
   
5. Can they give a rough prognosis?
   

I really hope that helps.

Best wishes

[AMumInScotland]

The doctors often try to weigh up how much people want to know about the detail, from how they react and what kinds of questions they ask, so it might well be the case that the doctor thinks they don't want that much detail, rather than deliberately not giving information.

So if your other relative asks any kind of questions at all it will probably help get things moving.

I think I'd be asking -

What are the options for treatment, and why has the doctor picked the one they have? If it feels that they have been slow to treat it, then I'd have to guess that the speed isn't going to make a difference to the outcome, but might be more about reducing the symptoms and making them more comfortable in the remaining time, but only the doctor can explain if that's it or if they have to wait for other reasons (eg need to sort out weight or blood pressure before they can treat)

Roughly, what are the kinds of figures for this? They can never give specifics, but they can maybe say 30% of people will make it to 5 years from this point, for example.

How much benefit is the treatment likely to have, what side effects are likely, how will they work out if it is making a difference - regular scans? blood tests?

Are there specialist nurses who can talk around questions as they come up? People may not want to 'bother' the doctor with every thing that happens, but if there are nurses who can be available, that can be easier.