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CANCER OF UNKNOWN PRIMARY FOUNDATION

Questions you might ask?

These questions have been constructed from users’ workshops – that is to say, what cancer patients think are important questions – and adapted for CUP patients. (The workshops in 2010 were organised by the Partnership Forum and the Cancer Campaigning Group.) You may want to print this page and take it with you when you first go to your hospital appointment.

It may be appropriate to ask only a few questions; but looking at the others may help inform your thinking. (If you believe from your experience that anything is missing or inappropriate please contact us so we can improve the list to help others.)

Diagnosis

  • What treatment is available for my cancer presentation?
  • Who is my point of contact when I leave here today?

What is the plan for me?

  • What tests will I have?
  • Is there a role for surgery/ radiotherapy/ chemotherapy or a combination in my treatment?
  • How long will I have to wait until it starts?
  • Where will I receive my treatments?
  • What side effects can I expect?
  • What is in place for discomfort or pain control?
  • Will my treatment be as a day patient or an in-patient?
  • How long, if at all, do I need to stay in hospital?
  • Will I be given a written treatment plan?
  • Will I be told about what long-term effects my treatment might cause?
  • If I am admitted, will I be on a general or a specialised cancer ward?
  • How long will I have to wait for the results of diagnostic tests?
  • Is it OK to ask for a second opinion at any time?
  • Are there any CUP research trials at the moment?
  • If yes, will I have access to a trial?

What are the clinical outcomes for my condition?

  • Does it have a specialist CUP team? (In other words, has the hospital implemented the NICE Guideline on CUP published in 2010?)
  • How many CUP patients does my consultant/ the CUP team see each year?
  • How many patients with CUP does this hospital treat each year?
  • Is the aim of the treatment to try and cure me or to make my quality of life as good as possible for as long as possible?

What are the choices available to me?

  • What are all the treatment options for my cancer?
  • Is there flexibility of treatment?
  • Can I choose who will treat me?
  • Can I speak to other patients who have had my sort of treatment before I have it?
  • Can I have chemotherapy at home?
  • What information is there to help me to choose where to have treatment?
  • Can I choose which consultant I have?
  • Where else can I go to receive this service/ have my treatment?

Questions about the CUP team; its experience and performance

  • Who is in the clinical team looking after me? (Names, roles, specialism and experience)
  • Who is the Clinical Nurse Specialist/ key worker looking after me? (Will my key worker be available 24/7?)
  • Is there continuity of care? Will I usually see the same person?

Do they communicate well?

  • Will I be listened to by the nursing staff/ consultant? (Or is it always “we know best.”)
  • Will my case be discussed at a Multi-DisciplinaryTeam (MDT) meeting?
  • Will they take a holistic approach to my treatment?

What about my quality of life?

  • Will I be able to work?
  • How long will I be in hospital ?
  • How long will my treatments take?
  • What will I feel like?
  • What do you do differently for elderly patients being treated for cancer?
  • Will a nurse actually come if I use my call button?

Hospital environment and access?

  • How clean is this hospital compared to others?
  • What are the hospital acquired infection rates?
  • What are my chances of catching MRSA or another hospital infection?
  • Are all wards single sex?
  • Can I have a single room?
  • How far will I have to travel?
  • What are the parking facilities like and how much do they cost?
  • Is there good public transport?
  • I don’t have a car, how can I get there and home?
  • What are the visiting hours?
  • Are there translation/ interpreting services?

What kind of information, advice and support is available to me?

  • Can someone explain my treatment to me in plain English?
  • What written information is provided at the time of my diagnosis?
  • What information is available about side effects of any treatment?
  • Is there a local support group for cancer patients?
  • What written information can you give me on my cancer and its treatment?
  • Does the hospital provide a 24/7 advice service for cancer?
  • Will I have contact numbers for out of hours help, if not 24/7?
  • Who can give me financial advice, benefits advice etc?
  • What emotional support will be available for me, my carer, my family?  Will I (and or my carer) have access to psychological support?

Questions about complaints and adverse incidents

  • What were the top 3 categories of complaint recorded last year?
  • What action did you take?
  • How there are being any or are there any outstanding claims for poor standards? (Is it another ‘Stafford Hospital’?)
  • And if there have been any major issues, are they now sorted?
  • If I want to complain about something, how can I be sure this won’t affect my treatment?
  • What is the rate of emergency admissions for patients during chemo?