What questions should I ask my oncologist at my first appointment?

Preparing thoughtful questions for that first oncology appointment can help make the most of the time together. Consider asking about your specific diagnosis details, treatment options available to you, timeline expectations, and what support resources might be helpful during treatment. Many find it useful to bring a notebook or have someone with them to help remember the discussion, as there's often a lot of information shared in these appointments. This community has many members who've been through similar appointments and may share additional question ideas that were helpful for them.

Agree with the AI suggestions, especially to bring a trusted someone to the appointment. I brought my adult daughter and she thought of questions I hadn’t thought of. One thing i would add is to ask how to contact someone outside of appointments. You will want to report side effects, ask questions, & etc.

I wrote down EVERY question that popped into my head down in a notebook then read them over and reorganized the 2 days before my appointment. I kept that notebook within arms length 24/7.. even slept with it in case I thought of something when laying in bed stressing. I had 4 pages of questions from "can I still use my Invisalign retainer" to "did I get cancer from eating too much soy/tofu" and every kind of question in between. And I would suggest bringing someone with you. It is a lot of information and everyone remembers different things that were said. It was very helpful

I really wish you luck. I found oncology to be difficult to work with.

@judith s., in what way did you find onc difficult?

They have pre-menopausal/postmenopausal drugs and 5 year,or, 10 year treatment plans. They don’t want to discuss anything else even if your cancer recurrence percentage is small. I found that they were hesitant to answer questions. I choose not to do any aromatase inhibitors. When I told my breast surgeon, she was fine with me not taking them because mine was small and slow growing. Oncology justifies the side effects, even getting another cancer. I did not feel comfortable for my situation. I felt like another number for a lab experiment. I’m sure Outcomes4me will generate an AI reply to my thoughts. But if you scroll through this site many women who make the decision to go on the drugs and follow their protocol dealing with horrific side effects also end-up getting another breast cancer. And then they are angry. ‘I did what they told me, suffered the side effects and boom. It’s back. I am 100% comfortable with the decision I made for me. But I do not know your specific situation. Advocate for you!!!! Ask the questions and then go with your gut.

My tumor was 1c and slow growing too. Surgeons operate and oncologist treat - listen to your oncologist - cancer wants to come back! You don’t want to give your surgeon repeat business. I was on Letrozole for 15 years and the cancer came back as Stage 4 three years later - wish I had never stopped taking it. If you don’t like Letrozole ask for another aromatase inhibitor. Anything you can do to prevent is useful. The longer you are cancer free with HR+ tumors the higher probability your cancer will come back.

Who were ur Drs.and where?

My thinking is it is best to go to a comprehensive cancer center affiliated with a university hospital. If you have to travel, travel. I was given many options and the information i needed to make my choice. Follow up Is great too.

Where do u live? I’m here in Fl. and I go to U Health which is actually associated with Sylvester (University of Miami) I’ve been with my Dr. for almost 13 yrs. She’s head of the department, does trials, and research. A very interesting thing happened. I was tested twice for genetic and braca 1&2. Everything came back negative. She looked in the tumors and found the braca gene. So my cancer is not genetic. I got cause I took so much estrogen for menopause cause I didn’t want to deal with the flashes. Interesting enough my brother had cancer my Mom was 103 plus when she died and found out 2 weeks before she had colon-rectal cancer that spread everywhere. And we never knew it cause she never complained. Anyway u’re probably right about finding a Dr. who’s associated with a cancer center. They seem to be more interested in u and how to deal with ur particular situation. And they have access to more. So I wish u a Happy,Healthy and Safe New Year. Please keep in touch and let me know how u are. Mary

Were you asking me? I live in Maryland. I travel into DC to the ourisman breast center at Georgetown university. I have a friend in Florida who goes to Moffit Cancer center in Tampa. She says it’s great.

I would double check anything they tell you bc my oncology team would either out right lie, sugar coat or evade giving me answers to certain questions! It got so bad I actually begged them to STOP lying to me! Now there were a few occasions they actually didn't know the answer to a question... rather than say IDK they would filibuster and/or change the subject. I finally came to the conclusion I was different than most patients...I wanted to know the good,bad AND ugly but most patients do NOT! A majority only want to hear the positive and none of the negative! Insist on every scan they can give you BEFORE treatment starts! I wanted to know every single place I had cancer BEFORE starting treatment! They wouldn't have done the scans had I not asked! We knew the breast and lymph had cancer...but I wanted to know if it was hiding in other places. Make a list of questions and stick to your guns about getting an answer for every question! Some medical staff would get pissy when I pulled out my list of questions...Oh well! I wasn't there to become friends I was there trying to get treatment for a disease! Don't be afraid to make them angry if you aren't getting clear answers to your questions! You'd be surprised how many patients put up with mistreatment bc they don't want to anger a doctor! If a doctor does get angry about answering questions it's time to find a new doctor! Good luck!!

Hi. I agree with some it. But having the medical back around do have no one can put anything over me. Luckily I do have the right Drs to be able to talk to and able to discuss what the next opinions should be. I’ll give u a quit answer to what ur saying. I was in remission for eight yrs. At the last half of yr. I went for a pet-scan which I did every 3-4 mons with tumor markers checked. I insisted so it was no problem. While the tumors were slowly going up and had to do the pet-scan also. Well needless to say my spine lite up with a tumor on my spine T7 and pain like u wouldn’t believe. I went to see a specialist who is an oncologist surgery. After seeing him and telling me it would be 10% chance of the surgery I immediately opted out. Now this where my medical background stepped in. First all working on the spine is very dangerous as it is. As great as he was supposed to be what if he nicked the bone! I would be paralyzed. Then another question what would if he would had niked the tumor itself! I’ll be dead! I discussed with my Dr. and I elected to say with pain. All Drs not as narrowed mind as u found. Maybe it’s time for a second opinion. By the way I’m back in immune therapy with chemo and taken the pain away . There are plenty of Drs who are interested in ur problems not trying to get done with u so they can go with next with their greedy self’s. I’m here if u ever want to talk where do live. I’m in Fl. Good luck!❤️. Mary

Hi Mary! Good for you stopping the spine surgery!! That could have had catastrophic results!! Funny you said that about new doctor! I am currently going to different hospital system w/ all NEW doctors! I've spoken with a new oncologist and so far I like him! He mentioned to me studies are showing low dose CDK4'S are just as effective as high doses! (I had already read about it) I was shocked he mentioned it to me! Any other drug is started low then the dose is raised based on tolerance! Oddly Cdk4's are started HIGH then lowered?? Didn't make logical sense to me! He said he suspected the high to low was all about the $$$ big pharma! Lol So this new guy may very well be a blessing for me! I am like you I question everything and won't just do or take something unless it's proven to be beneficial. The old saying...you wouldn't just jump off a bridge because someone told you too! Doctors are people and human...all humans make mistakes everyday! I respect them but I will always question them! The truth is they DON'T know everything! They aren't god's! And if I can prevent being on the wrong end of a mistake I will! I have a medical background as well but it's been many years since I've worked in it. Unfortunately this cancer has really became an all consuming terrible hobby! I would much rather just TRUST everything they say but it's just not in my DNA to do so especially after what I've seen and heard! Who knows maybe I will be able to trust the new ones a little bit more than the old ones? Time will tell lol I'm formally from FL currently in Pa

I agree, Mary. After a shaky start I’m 100% sure my oncologist is on my side. I am even more thankful after hearing my friend’s story with lung cancer. She was diagnosed 5 months ago and still no treatment. Her doctor wanted to get her on a clinical trial that only gave 1/2 the chemo dose than Standard of Care because she has flare ups of Ulcerative Colitis (UC). After waiting all that time she finds out she can’t be on it because she takes steroids which which is the treatment for UC - shouldn’t he have known that? It’s clearly stated in the clinical trial protocol. I am in fear for her life. People with UC get chemo all the time - they just need to be monitored. She’s actually in good shape for Stage IV - her 2 tumors and 1 lymph node were removed successfully by surgery but really there is no sense of urgency in that organization.