First oncology appointment - what do I ask?

[Sharkey1234567]

hi all

Me again.

My mum has her first oncology appointment early next week and I wondered if anyone has any useful advice on what questions to ask please?

Does the doctor give a prognosis or can you choose to know this or not?

how soon after the appointment would treatment start?

Very nervous and just want to try and make sure ask all that is needed to do the best for my mum.

Thanks in advance

[trevhutchins]

Go with her and sit and listen, the questions will come to you during the appointment, as for the prognosis they’ll probably say 5years but don’t take this as gospel !! people do go on for years longer.. wishing your mother and yourself all the very best

[Sharkey1234567 in reply to trevhutchins]

Thank you for your info and kind wishes much appreciated

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Sharkey1234567

On the first visit you will be given a lot of information, it can be overwhelming trying to absorb all of this. Beforehand gather your thoughts together and write down some bullet points, it may well be that some of them will already have been answered by the Oncologist. Some things to think about

What type of cancer ?

Has it been checked for genetic mutations such as EGFR, ALK, PDL1, ROS1 etc?

Spread and stage?

Treatment options?

Expected treatment outcome curative, supportive, palliative?

Clinical trials?

Side effects of treatment?

Risks vs. benefits of any different treatment options?

For many people its once you go home and digest all the this information then you will then have lots of questions.

You should have been allocated a CNS (clinical nurse specialist) take note of her name and contact number as they can be a very useful go between and often will be able to answer your questions

If you would like to discuss anything at [e-mail], our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kindest regards

The Roy Castle Support Team

[Sharkey1234567 in reply to RoyCastleHelpline]

Many thanks for getting back to me.Do you know if the oncologist will give prognosis? Or ask if you want to know?

Thanks so much

[Denzie]

When you’re told you have lung cancer* What kind of lung cancer do I have?

* Where exactly is the cancer? Has it spread beyond where it started?

* What is the stage of my cancer, and what does that mean in my case?

* Will I need any other tests before we can decide on treatment?

* Should my blood or tumor tissue be sent for molecular testing?

* Has the cancer been guy checked for gene changes that could help you choose my treatment options?

* Do I need to see any other doctors or health professionals?

When deciding on a treatment plan

* How much experience do you have treating this type of cancer?

* What are my treatment choices?

* What do you recommend and why?

* What is the goal of treatment?

* Should I get a second opinion? How do I do that? Can you recommend someone?

* What are the chances my cancer can be cured with these treatment options?

* How quickly do I need to decide on treatment?

* What should I do to be ready for treatment?

* How long will my treatment last? What will treatment be like? Where will my treatment be done?

* What are the risks and side effects with the treatments you suggest?How long are they likely to last?

* Will treatment affect my daily activities?

* What would my options be if the treatment doesn’t work or if the cancer comes back (recur) after treatment?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.

* How will we know if the treatment is working?

* Is there anything I can do to help manage side effects?

* What symptoms or side effects should I tell you about right away?

* How can I reach you on nights, holidays, or weekends?

* Do I need to change what I eat during treatment?

* Are there any limits on what I can do?

* Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

[Red58 in reply to Denzie]

You’ve say it all Denzie a good idea to write it all down it is a lot take in x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Sharkey123456

There is no straight forward answer as each oncologist will have a different approach to the information that they provide, they often will talk about treatment outcomes, if they expect it to be curative, supportive, or palliative. The prognosis is based on statics gathered over many years of research, remember any prognosis is an estimate and if you look back at previous posts you will see that many on this forum have lived way beyond the original prognosis that they were given.

Have a look to this link to a page on the MacMillan web site explains prognosis and survival guides very well

macmillan.org.uk/cancer-inf...

Regards

Roy Castle Support Team