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?

“What a brilliant site, it provides a light in the grey world of CUP.”

Chris (CUP patient, UK)
"A valuable patient support organisation that advocates much needed research and change for this neglected group."

Prof. Orest Mulka (former GP)
"The immense relief that I have obtained so far from just reading everyone’s stories on this site is incredible. Up to this point I have felt so very alone as no one could give me any advice, nothing to read, nothing to comfort me as I flounder.."

Susie (CUP patient, Ireland)
"Not only is the website an essential resource but the Foundation has been instrumental in bringing together experts from across the world and encouraging the development of research to improve the outcomes of patients with CUP."

Dr Andrew Fowell (Macmillan Consultant in Palliative Medicine)
"At first I was tired of answering the questions about CUP to friends and some doctors but this website has helped me realize that the world needs to know about us."

CUP patient UK
"Thanks for your help. My family, son is also a doctor, have found it an invaluable resource from day one [of my husband’s CUP diagnosis]."

Gillian (GP)
"This is an excellent resource for patients and relatives. Keep up the good work! "

Dr. David Farrugia (Consultant Medical Oncologist)
"Soon after my diagnosis my daughter contacted you and you were kind and gave her hope."

CUP patient UK
"The information here is the most comprehensive and timely data regarding CUP in the world. In my view this is an invaluable resource."

Dr Tony Greco (Sarah Cannon Cancer Center, USA)
"A fantastic achievement as a resource!!!"

Dr. H Wasan (Consultant and Hon Senior Lecturer in Medical Oncology)
"Keep up the good work - you are helping people to cope ... well done."

CUP patient UK
"This site provides much needed and accessible help for CUP patients and their loved ones - I'm very, very impressed."

Nicola James (Macmillan Nurse Consultant)
“...a good balance of accessible information, but not too much to overwhelm the patient/carer.... I’m very impressed and will continue to direct my patients, relatives and colleagues to it."

Dr Simon Grumett, Consultant & Honorary Senior Lecturer in Medical Oncology
"Your website is such a good way of providing information that empowers the patient/carer."

Anne (former CUP patient)
"Thank God for this forum! I cried when I found it!"

CUP patient UK
"We as a family needed you at the worst time in our lives and found the support for the short time we needed it so helpful."

Family of a deceased CUP patient
"Your site is so great. I have a hard road ahead but feel calmer now that I've started a targeted chemo treatment. I fully understand the importance of your website and help."

CUP patient UK
"CUP is a neglected area. This website is a fantastic resource."

Dr Maurice Slevin (Medical Oncologist)
"I also want to thank you personally for setting up the website and this forum, I feel empowered."

CUP patient UK
"Many congratulations on establishing such a superb website."

Dr Robert H Phillips (Consultant Radiotherapist and Physician in Medical Oncology)
"Many thanks for helping me navigate the cupfoundjo web site. It has much more information than I expected to find and is a very useful resource for cup patients and their families."

Husband of a CUP patient, Wales
"A valuable website that has focused information, clearly explained, for CUP patients, carers and medical professionals."

Allyson Kaye MBE, Chair of Ovarian Cancer Action
"I think your website is excellent, simple and informative."

Miles (a Jo's friends supporter)
"As an oncologist treating numerous patients with CUP I greatly value the work of Jo's friends. I am also very impressed by the Jo's friends website which is a very useful resource for patients, carers and health professionals."

Dr Pavel Bezecny (Medical Oncologist)
"A godsend of a site when you get told they don't know the primary cancer site."

Paul
"This is the loneliest diagnosis one can receive. Thank God [for] this website.."

Partner of a CUP patient
"The landscape for CUP patients has changed beyond all recognition compared with 10 years ago… the CUP Foundation has been behind the vast majority of these steps."

Dr Richard Osborne, Lead Clinician for the NICE CUP Guideline