What questions to ask for first appointment with oncologist

LisaO

I have my very first appointment with my oncologist this Thurs.  To say Im scared is an understatement.  To make matters a bit more complicated I will be going on my own.  I need to get this so right.
I dont have my official diagnosis, this will be thrown at me on Thurs.  All I know is that I had a total right hand mastectomy due to two small areas of cancer, one 1.5cm, the other "very small".  My sentinel node biopsy showed 2 positive nodes which have been classed as "micro" ..I then had a total auxillary clearance which was all clear.  My surgeon seems to think that I will have "choices" with my treatment.  She also spoke of possibly no chemo due to low % benefits...but hormone treatment looks definitely on the cards.  
So what questions do I take in with me.  Ive been told to get off google, get off the internet by my family and just do whatever they say. But if I have "choices" how on earth do I learn?  Yes Im researching as much as I can..cant help it.  
Im so worried   that everything from what the surgeon has told me might just change and I will be railroaded into chemo, with all these stats from the oncologist thrown at me.  How on earth do I research, where do I research for my so called "choices".  How long do I have to decide on my "choices" of treatment.
Any feedback would be much appreciated. 

Afraser

Good advice to stay off Google. Researching the wrong thing on Google is easy and alarming. My advice would be:

Take someone with you. It can be confusing and a lot of information at once. Two heads are better than one.

Ask for information in writing about treatments, possible side effects etc. My oncologist gave me a sheet on everything he was recommending and it was helpful over quite a long period.

Don't confuse factual information with a lack of care or empathy. Most oncologists want you to understand what they plan, why and what effect it will have. It can sometimes sound a big brusque. If over time you are not happy with your oncologist, switch as trust is important. But the first appointment is not the best indicator sometimes.

Most of all don't be afraid to ask if you don't understand. In this situation, no question is a silly question. 

A few days while you think is unlikely to make any difference. If in doubt, exercise your right to consider properly. 

Very best wishes for your appointment.

Romla

Hi Lisa my first piece of advice is to get bcna kit and read it - I read some but recently found much more use as questions were suggested and is a diary to write responses.My memory is not great probably due to stress .My family have a similar view to your own possibly my own fault as considered to be a bit too capable and am trying to rectify that view. I will be visiting medical onc about hormone therapy decision soon - I'm going to ask about side effects , who to contact if they develop ,how I can manage them if they develop and will they stop when I finish treatment.In your position I'd also ask how will I benefit from it , which is suitable for me and why. Also this site has been a great steadier this past week or so for me as I was very wobbly from what I had read online - I am post menopausal and have osteoporosis so I am being offered Aromatase inhibitors ( probably Arimidex) which are daily tablets for 5 years to prevent recurrence and 6 monthly prolia injections to prevent fractures.One things I gather from this site is that side effects settle after a year or so and there are things you can do like exercise and nvitamin/ minerals to also help.I also take heart that many women have been through and live happy lives and many women are doing it right now and managing - this site is an amazing place to come to from those points of view. I have put details about my journey thus far on my home page so won't cover that here.

Romla

Just remember there are many of us - 17000 new diagnoses a year - you are not alone and there is always someone here to chat to.xo

iserbrown

Great advice being offered.  Keep off Google! There are lots of factors that go into the first oncology visit. Your BCNA kit is a great resource. Hopefully you can find someone to go to the appointment with you. Two sets of ears are better than one. 

Take a deep breath and try and do something you really enjoy as worry won't bring Thursday on.

Take care and you'll find the questions will flow freely as your treatment plan unfolds. 

melclarity

Hey Lisa, 

If it helps, I've been doing this 6 years and had it twice and not much support really, I always went alone to appointments. What I suggest is, a deep breath and remind yourself no matter what they say, you are going to be OK! A Surgeon shouldn't comment to be honest as they have no idea in the way the Oncologist does. I love my Surgeon of 6yrs but he did the same, so I went in thinking I had a few options, but I had NONE. Chemo that was it unfortunately. I was so distressed when I left I sat in my car and cried for a half hour. So in hindsight I would say to be open, just hear what they say in regards to your pathology, even ask for a copy of it too. Then just listen to what their recommendation/s are, if they say anything that doesnt make sense, just ask. You can also think of questions later and email them, thats what I did, and it was really helpful. I'm 19 months post chemo now and I never dreamed I'd be finally enjoying life again and feeling the best I have in the past few years. Remind yourself, theres nothing that they could say that could surprise or shock you..it helps keep you calm and take it in your stride. All the best. Melinda xo

primek

Things I would ask...

What added benefit would chemo give me...or why do you not recomnend chemo for my tyoe of cancer.

What are the statistical differences with or without hormonal treatment or other treatment.

How will we manage side effects if any of treatment? What should my GP be monitoring for. 

Will I be having 5 or 10 years hormobal treatment?  

What other things should I be doing to reduce my risks of recurrence?

If I have questions later how do I ask or who should I ask. 

I wrote my questions down and just checked off that I'd asked it /got answers  before I left. 

Make sure you do listen carefully and not just focus on your questions...they may cover the questions in their explanation.

Best of luck. Kath x

fairydust

We are asked to make choices be informed patients. The problem is for many of us this is the first time we have had to make a decision on these matters. We do not know this area. 
In my case I listened and took in the information. After getting the facts then I was able to research and decide.
Breast care nurses can help, you can leave a question for the oncologist to get back to you.
 If your not sure ask .Your gp may be helpful.The cancer council is great to talk to.  In my case I delayed treatment on request by  about ten days as I needed to.
The oncologist only has your health as their main concern. Whatever they recommend they only do it so you can live a long and happy life. THere is no wrong decision.