Dad diagnosed with terminal cancer - what to ask oncologist?

[Bimblepops]

My darling Dad has been diagnosed with terminal cancer. I’m going to his first appointment with the oncologist. Can anyone advise any questions to ask?
So far I have:
Outlook
Timeline
Spread of cancer
Treatment options - shrink tumours? Hold them at bay? Aggressive treatment then maintenance allowing him to “live with cancer”? Prolonging life?
Chemo type
Chemo programme and length
Side effects, including on his existing other conditions
Likely progression

Is there anything else we should ask?
Obviously we’ve not done this before, so we’re going into it blind, and utterly heartbroken.

Thanks

[chasingmytail4]

So sorry to hear that OP. I attended appointments with my MIL after her diagnosis, she asked the questions, I was there to listen to the answers because she found it all too much to take in. My advice would be to take a pen and notebook to jot things down and be led by your Dad. He may not want to know the answers to some of those questions, such as outlook, timeline, etc. It's a tough time for the whole family, and I feel for you.

[BonApp]

I’m sorry to read this. I lost my dad 7 months ago after a short prognosis.

I felt my dad’s care was very disjointed between the GP, the pain consultant, the oncologist and the palliative team. So I would recommend understanding who is involved, what their role is, how they interact, when your dad will see which person, etc.

There were no treatment options for my dad, so they didn’t do many scans and just went on how he felt.

But yes, be led by your dad.

My heart aches for you all.

Do you have support op?

[AntiBi]

Hello,
I echo pp re taking along a notepad.

So sorry to hear you're going through this. I've lost both parents to cancer.

I think asking is there a Macmillan Cancer Nurse contact to support you and your dad may be useful. Also, does the oncology team communicate directly with your GP? We had a fantastic GP who was proactive in seeing my mum through cancer treatment and eventually into a hospice. Having experienced one parent passing away at home and one in the hospice, the latter is infinitely more preferable on a whole load of levels. Of course, a discussion around this may be pre-emptive at this moment in time.

With regards treatment, ask about anti-sickness medication; wigs (if hair loss is an issue); how isolated show your dad be after treatment giving low immunity levels; what degree of elevated temperature should you call someone out; steroid medication to increase appetite; ensure drinks to make sure he's getting appropriate nutrition.

[AntiBi]

Also, an end-of-life care plan is really positive if you feel able to discuss this with your dad. Usually, oncology nurses are involved

[BonApp]

Agree re hospice care, bloody amazing places and people.

[NormaLouiseBates]

I'm sorry to hear this OP. I'm currently going through this right now with my own beloved Dad and it's a horrible and difficult time. He was diagnosed in November so I really do feel your pain. We're all still utterly heartbroken but just taking it one day at a time; it's all you can do really.

I echo taking notes or asking another family member to attend to do that if you don't feel like you can concentrate and take notes at the same time. Hopefully your Dad's oncologist will be helpful and informative but don't be scared to ask questions.

Wishing you all the very best.

[Bimblepops]

Thank you all so much for your advice.

It’s so horrific having to navigate this huge unknown journey anyway, but you feel totally helpless because you have no idea what you’re doing!

We’ve got a very good, close family network and we’re all nearby each other, so everyone has support. I’m going with my Mum and Dad tomorrow, I’m there as the extra pair of ears (notepad and pens already packed) and to ask any missed questions.

Still doesn’t seem real

[Tinkobell]

OP I'm so sorry to hear your heartbreaking news. I'm afraid we lost our beloved FIL over Christmas to a tumour.
These things are not an exact science, but try and get a handle from the oncologist on the likely prognosis and time left given treatment routes and then plan as best you can.
My FIL was struck down really and only had 3 months from good health to the end. There was no LPA in place: which did cause some problems gaining access to money (all in his name) and there was no LPA for health and welfare. I realise that you are dealing with an emotional tsunami right now and talking about money and LPA's might feel cras but I would urge you and him to consider if a trip to the solicitor to fast track these might be appropriate. The lack of health & welfare LPA did cause problems in hospital for us; the consultant said he should have a DNR (do not resuscitate) which our family and he (!) disagreed with. As events progressed and his condition deteriorated, resuscitating was not an option - but options are what you want OP, so be warned.
Sorry again. Spend lots of time together talking. Get the family to visit and send videos to him, they really help raise the spirits. Thinking of you and him 💐

[CantWaitToRetire]

I'm sorry to hear your news OP. I went through this with my own beloved DF in 2017. Unfortunately he was given the news that his cancer was untreatable (pancreatic) so we never got as far as seeing an oncologist. As others have said, be led by your dad and what questions he wants answered (esp around outlook/timeline). Definitely ask about support that may be available from community nurses and Macmillan and how this is arranged. Macmillan were a godsend for us and gave lots of great advice and helped my DM claim for carers allowance.

A lot more questions will come out later as the illness progresses and may be directed more to the GP/nursing team ie getting aids if necessary such as walking frame, wheelchair, commode etc (sorry if this is all too much, it's things we had to have). I second the statement above about hospice care. They offer respite care as well as end of life, and it's so much better than being in a hospital.

It's a great idea to take a notebook to the meeting because each of you will hear and remember different things and it's all so much to take in at the time because you're naturally quite emotional. Good luck with your meeting OP.

[SassitudeandSparkle]

I would expect to be given the contact details for a nurse, so any questions that you think of afterwards you can ring and ask.

So sorry to hear this, and it is such a lot to take in. I would let your dad lead the questions though, unless he's already raised all the ones in your list he may not want to know some of the details.

[NormaLouiseBates]

Hope the meeting went okay OP and you got some answers

[YetAnotherThing]

If your dad is of the stoic sort that doesn’t ask the team or want to know “how long etc” then have a conversation with your dad along the lines of “are you happy for me to speak to your medical team without you”. If he’s a yes- then ask him to repeat that to his medical/nursing team. It means you can then call his Macmillan clinical nurse specialist etc and ask questions he might not want to hear but gives you answers and support and so you can plan for next few weeks and months. Sorry you’re dealing with this

[MyGuideJools]

So sorry you are going through this op
I've been there with my dad, we were told it was terminal in the July, we lost him in Sept
I went to all the appointments with my parents, just to be an extra pair of ears.
It's heartbreaking remembering it all now.
I would say, check with your dad what he actually wants to know. My dad wanted to know everything! but then just wanted to be at home with his family.
There were no more tests or anything as nothing could be done.
we didn't get as far as a hospice but I've heard many good things about them.
It's a tough time and my heart goes out to you. The specialist nurse we had was amazing, I could phone her with any little worry, so do ask about support