What should we expect at the first oncologist appt.?

Hi! My dad's first oncologist appt. is Monday and I was thinking I should compile a list of questions for the oncologist. Can you all give me some suggestions please? He has Squamous Cell Carcinoma stage 3b.
Thanks,
Marnie

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hey Marnie,
it won't be as bad as you think in some ways, and it's gonna be worse in others......let me give you some clues.

first - you're gonna be scared - that's normal and natural - and the onc's gonna use big honking words and look real serious and scary - and that's normal and natural for him. remember one little thing - you are the customer. take in a notebook to take notes and don't be afraid to have him spell the big words to you. it's a real good idea to take a tape recorder. trust me, you won't remember 10% when you walk out if you don't come prepared.

second - stay away from prognosis questions or statistics questions - THEY DON'T KNOW THE ANSWERS - and if they guess, they'll be wrong. it is your job to figure out how to get your sweetie better and healthier - if you focus on the other stuff, that's what you'll attract - if you focus on how to get better, you'll attract get better ideas.

third - you want someone who is going to explain stuff to you and work with you - if the onc doesn't fit the bill, find a new one. chances are real good you're going to love him, but there is always that bad seed wandering loose.

fourth - if something seems weird, have the onc use other words to explain it to you until you can understand. all of the doctors have been trained to teach, and sometimes need to be encouraged to do so. you should not be expected to know everything on your first visit.

now - for the visit itself - you will get a long visit on the first time, and will get a real good exam - in addition, you'll get a list of stuff that needs done - scans, blood work, more scans, etc. and then he'll tell you the chemo that will be administered. honestly, you won't hear much more at that time. you will get trained by the onc nurses on your first visit to them (may be the same appointment). they generally do a fine job. one of the nurses will draw blood for tests (a couple of vials) - nothing happens until his blood comes back in the ranges the onc will want.

then, the first chemo visit - the nurses will run through training - what to expect, what to do when weird stuff happens, what the chemo looks and feels like, and how long it's gonna take. for this, you need to pack a survival kit - magazines, hobby stuff, light snacks (nothing smelly like tuna fish), and water (water is mucho important). iPods and dvd players are nice also. it's gonna take a while. plan on 2-8 hours depending on the chemo. again, take lots of notes and gather whatever brochures they're willing to give you. they will also give you some prescriptions, like for nausea. take them and get them filled. while you're at the drug store, buy a bottle of sennekot and also immodium to have around the house.

get real close with www.chemocare.com - it will save your butt and your sanity. your biggest job in keeping him healthy is to stay ahead of side effects - recognizing them and heading them off and dealing with them.

now - for the biggest advice - ask if you can sit with him during the first chemo session (more if you want) - it will blow a lot of the mystery out.

I promise you - once treatments get started, your life will fall into a rhythm - and it will get substantially less scary and disconcerting - plus you have us to fall back on.

one other thing - get a big 3-ring binder and organize stuff - get copies of ALL test results, scans, etc - and bills - and make sure they are filed real neatly. one day, you will need it and you'll be happy you got organized.

sorry I rambled on so - you asked the most important question possible - how do I get ready for day 1.....

many hugs from your new sister
Pat

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Betsy made a great point - make sure to explore radiation options also (including cyber knife and gamma knife). daddies are wonderful people, and we need to hang onto them!!!
hugs
Pat

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Same here Pat said it all. :) And she is right stay away from prognosis questions and definitely dont ask the "how long" question. They are never right and its hard to stay focused on the positive when you have that looming over your head... It will be fine you guys can do it..

Loni

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The only thing I can add is that your onc should be hopeful. If he is a dooms day doc find another one. One thing I can't stress enough is question question question until you are satisfied you got an answer. Write down any you think of and take them with you.

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If chemo is recommended, ask about getting Dad A Mediport,saves the veins. decreases number of needles sticks. much easier for chemo, and if it is a "power port" it can be used for scans and other treatments as they come along.

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Okay guys thanks alot, I knew you could help. Pat, you are wonderful, I am going to basically copy and paste your reply and send it to my sister who is also going to the appt. She is very doom and gloom herself and I just know she is going to ask the "how long?" question.

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Thanks Terryl, I will definately check on that. Sounds much more convenient.

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The port is great, as far as I am concerned it should be the only option. Those doctors shouldn't put all that chemo directly through the arm like that. Did you watch "farrahs story" her veins were just about gone in her arms and they had an extremely hard time just taking blood from her. Tell your sister to become a member on this site as well, we can knock the gloom and doom right out of her.. :) good luck keep us posted

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What a team, they said it all. I am telling you I was listening in on this, and what great advice nothing I can think of to add. but... Good luck, and I will say a prayer tonight for peace to you and your family.
God bless and good luck tomorrow.
Sandy

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Take a tape recorder or at the very least a notebook to take detailed notes (recorder is better). Your oncologist will probably forget to tell you this but make sure your Dad is very hydrated before starting chemo or radiation. Make sure you know who to call in the middle of the night if you have an urgent question or problem. Make sure he gets the most advanced radiation available. Don't hesitate to get a second opinion if you feel it's necessary.

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My sister-in-law is going for second opinions next month and we're working on a list of questions for them to ask the doctor. We want to make sure they get the most out of their time with the doctors. Here's what we've come up with so far, but I'm sure there will be further revisions. The questions are geared toward a second opinion, not an initial consultation, and are based on her situation (nscl stage iv) but you might find some questions that are helpful to you.

Where specifically is my cancer?

How much lymph node involvement is there? (What is the classification?)

What are my treatment options? How was my treatment decided? Why am I on the specific drugs I am on?

What is targeted therapy and how is it different from chemotherapy? How are Avastin and Alimta different and what does each do?

Based on my records and history, what treatment would you recommend? Would you treat me any differently than I am being treated knowing I want to fight my cancer as aggressively as possible?

Are there any circumstances under which radiation or surgery should be considered? What about radiofrequency ablation?

What are the latest findings from the American Society of Clinical Oncology (ASCO) for my cancer?

Where is new research being focused? How promising does it look? How long before we might see it available as a treatment option? What about Lucinex or other such cancer vaccines?

Is there any research being done using Tarceva in people don’t have the gene mutation, perhaps in different dosages? Are there any drugs getting similar results in patients without the gene mutation?

Where do you think we stand in finding a cure for my type of cancer or in being able to control it for long periods, similar to AIDS?

Do you think a doctor should suggest encouraging new treatments even if the patient’s status is stable?

What’s the best way for me to keep up with the latest treatment options? Are there websites you recommend?

How often should I get CT scans, PET tests? Any other tests (what)?

What effect does diet, exercise, a positive attitude have fighting cancer?

Under what circumstances might I want to consider a trial?

What do you think about testing to find out what treatment works best for a patient’s specific cancer? Are you familiar with Rational Therapeutics? There is a lot of research that talks about targeting therapy based on the specific make-up of the cancer cells. How is this make-up determined?

Have you heard of Sun’s Soup? What do you know about it? Would you recommend it?

Recent studies of Avastin and Alimta show increases in both progression free status (PFS) and outright survival statistics, but the improvement isn’t very large. Do you expect these numbers to improve over time? A 2-month increase doesn’t seem like much. Do you expect those numbers to improve over time? A 2-month increase doesn’t seem like much, but researchers seem to think it is. Why are these increases important?

Is there anything else I should be doing?

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i would be up front with him and tell him that its gonna take a bit for all this to soak in. ask how soon you can make a follow up appointment so that you can ask then about anything you walked away not understanding. or if that might not be possible, is there someone on his team you can call and talk to. my onc has a fantastic PA whose only job is to help the patients with whatever they need. she is available by phone, cell, pager, and email. she refills all my meds for me when i need them and makes referrals when necessary. she is truly a god send!

come back here often and ask questions or vent.

ill be keeping you all in my thoughts and prayers.
deb

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As has been mentioned, a tape recorder is a good idea. Depending on your state of mind, you will either hear things optimistically or pessimistically - and the tape recorder is good for going back when you are in a less anxious state of mind.

I would just ask all the things you want to know (write them down the night before); what can YOU do to help, what should you NOT do, what can HE do, etc...

Good luck, and God bless you both.

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