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First oncology appointment help

5 replies

Phoenixrise · 30/07/2019 08:41

Hi, my friend is currently being investigated for myeloma or Hodgkin’s lymphoma. He’s asked me to go with him to his first oncology appointment.
We could both really do with some advice on what sort of questions we should be asking and what to expect?

OP posts:
notapizzaeater · 30/07/2019 13:43

Have you looked at the relevant cancer web site (my DH has lung cancer and the lung cancer site has a list of questions to ask)

Take a pen and paper to make notes as you will be given a lot of info

Phoenixrise · 30/07/2019 22:16

I’ve not had a look yet, but definitely will. Pen and paper is a great suggestion. Thank you

OP posts:
iVampire · 30/07/2019 22:36

Be very careful if you decide to look stuff up online - the treatments for several blood cancers have been transformed for the better in the last couple of decades but there is still older, scarier stuff out there. Not what you need to be seeing fight now. So stick to reliable sites, such as Bloodwise

This bit, at the very beginning, when you know it’s rather likely something is badly wrong but you don’t know what you’re up against, is one of the most stressful times there is.

I think you need to ask why it is these two conditions they suspect (and whether here is anything else it could be) and what they are seeking to establish by further tests. Are they near-near-as-dammit sure already, but need to confirm (or confirm extent) or are they really still investigating?

What tests do they want to run, what info do they hope to get from each?

They might want to do some - such as bone marrow biopsy - on the spot. For lymphoma, they will want to biopsy suspicious nodes. It can take a couple of weeks to get results back (they often need to grow cell lines) so find out when his gone, and how he finds out. Expect further bloods, and quite likely to be referred for scans

Ask what are the likeliest scenarios on results so far. What (in broad terms) are the treatment options and prognoses?

Does the unit have specialist nurses you can contact between times if questions come up or you realise you don’t understand something? Can they recommend reliable websites if you/he wants to read up? Is there s local cancer support centre or Macmillan office?

Take a notebook and pen, decide before you go in if you if he will make notes, get as many useful phone numbers as you can (at least the receptionist)

How long until the appointment?

Minxmumma · 31/07/2019 10:06

Avoid google if possible. The consultant should be able to preempt a lot of the questions and take the time to listen to any concerns you have. It always seems very scary but often the appointments can give you a sense of control moving forwards.

Definately write things down or ask the consultant to list the relevant bits - medications, tests etc.
Is there a specialist nurse phone line?
If he given medication what are the expected side effects and any warnings (things like avoiding chicken pox, or needing to see a dentist before starting a course of drugs)
Ask for details on time frames - testing, results, treatment, follow up etc.

You will undoubtedly come away then chat and come up with a million things you want to ask. So pick up the phone and ask, even better if you have a specialist nurse to talk to.

chinateapot · 31/07/2019 23:22

We have just been through a first oncology appointment with my daughter last week.
We were given a lot of information but really clearly and important bits written down. Actually there wasn’t anything I wanted to ask by the end.
Useful questions though
Are there any further tests needed - if so what, when and why
What will treatment be? Likely side effects - think short and long term. What can they do to help with this. Would fertility be an issue for your friend? When will it happen?
Make sure he leaves knowing a plan and the next thing that’s meant to happen as well as having a contact for further questions
Good luck!

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