First Oncology appointment - what to expect/ask?

RR

Hi everyone,

My Oncologist phoned with an appointment scheduled tomorrow morning. I would love advice on what to ask and/or expect.

Thanks xx

Payne

If possible, take someone with you and/or take notebook and take notes or get oncologist to write things down for you.  Above all, ask as many questions as you can.  The type of cancer you have will determine the type of treatment offered.  Best of luck x

kezmusc

Hi @RR,

The first chemo appointment is possibly the most daunting.  I think the majority of us come out of that one well shaken.  They will give you a mountain of information to deal with so it is a great idea if you can get someone or your breast care nurse to go with you to remember the things you won't.  Write everything you can think of down tonight that you are worried about and want to ask.  Just in case you're finding it hard to think.

I think the most important thing to remember is that the list of possible side effects is long and they will tell you everything that may happen it doesn't mean it will.  

All the best for tomorrow.
Stay in touch

xoxoxo.

Kiwi Angel

@kezmusc I’m with u on the side effects - that list can be scary as hell but, touch wood, I have had very few of them. @RR I would definately write a list of questions before u go and take someone with u. Good luck xoxo 

kezmusc

Yep @Kiwi Angel,

Scared the bejeesus out me.  Your brain always conjures up the most awful things it can think of doesn't it.  Glad you're doing alright.  I did pretty good as well.

Kiwi Angel

@kezmusc I thought I would get every side effect listed but have done pretty well - not even feeling too bad today which I’m very happy about - so far the first has been the worst for me but it all a learning curve and working out all your medications. Hopefully I haven’t just jinxed myself and will feel crap tomorrow. 

onemargie

Hey @RR I agree with the lovelies above.  Take someone with you and take it a day at a time. Once you have a plan it is better. The bc nurse I talked to in the first instance scared the absolute crap out of me and I almost didn’t do chemo. I still don’t speak to her when I see her not just for that reason but a few others as well. It was the oncologist kind and gentle rapport that reassured me and made me feel at ease with it all. Please let us know how you go. It’s such a mixed bag of emotions but you can get your head around it. Big hug. Margie xx 

Sister

Take someone rational with you that you trust.  Ask about treatment regime, ask why that regime, ask about stats with or without the chemo, ask about side effects.
What do you do if you become unwell and need better meds?  What is the procedure if you become really unwell (this should be explained to you as a matter of course)?
Do they do cold caps and if so, do you want to go that path?
Ask about complimentary therapies such as rehab, psychology, dietitians.

onemargie

@sister. Look at you giving out such awesome advice love! Well done.

RR

oh, @Sister - you are a blessing xx

melclarity

@RR all the best for your appointment tomorrow. I've always done my appointments alone since my first diagnosis in 2011 and again 2015. I never wanted to have to worry about someone else and how they felt, rather than just focus on me and deal as best I could. I didnt need an oncologist 1st diagnosis but I did the 2nd so I knew I needed more than radiation. They will be straight to the point with your diagnosis and their recommendation of treatment based soley on your diagnosis. I didnt have to ask about cold caps, my Oncologist was up front about that for my regime it's never been successful. If you purely had taxol possibly then. Lots of ladies have done it, some successful, most not. Certainly lots to think about. My Oncologist gave me 48hrs to get back with an answer and he said if I couldnt make the decision in that time then that would be clear its not a path I wish to travel. I did travel it however. So just ask them to keep it simple even ask for a copy of your pathology. Hugs xo

Kiwi Angel

@RR - great advice from @melclarity about keeping your pathology results. I got a little zip folder that is kind of like an A4 pencil case when all this first started and I keep all my information, receipts, pathology etc in that folder and take it to every appointment with me. Good luck xoxoxo

jennyss

Dear @RR, Yes, the folder idea is very good. I had one that got me through my first six months of appointments and treatment. Best wishes from jennyss

Eastmum

@melclarity - I've also been to every appointment on my own - totally prefer it that way
Hope it all went well this morning @RR

RR

Hi @Eastmum, thank you for thinking of me. My appointment turned my previous advice a whole 360 - I am totally confused. The oncologist wants me to have surgery first - full mastectomy - before chemo in the hope that my chemo would be able to be reduced. Does this sound right? Has anyone had a mastectomy before surgery?

kezmusc

Hi @RR,

Although I had lumpectomy not mastectomy I had my surgery first then chemo.  I am sure they are recommending what's best for your situation.  It gets confusing when the plan changes.

xoxoxo