Questions for the Doctors

When the cancer diagnosis comes, it brings with it several truck loads of fear and another of questions. I have shared the following lists several times (too many, because cancer is a jerk who just won't go away), and I realized today that it's probably easier to make a post for it so I can just send people the link.

Questions on this list came from several sources: others who walked the path before me, questions I found in searches online, and questions that relate to my specific circumstances. They're good as a starting point for your own list. 

I strongly recommend writing your list down. You may have an excellent memory, but with everything going on right now, it's not a good idea to depend on it. Your brain is overloaded and stressed and scared, and that affects your memory. It sucks to be walking to your car and remember something you wanted to ask your doctor. You think you'll remember it; you know you'll remember it...but you won't. Don't believe me?

Picture it: Baltimore, February, 2016. Probably around 9 pm. Kevin's reading Harry Potter to me; yes, we're adorable. We finally finished the series and the accompanying books a couple of months ago, and now we're reading the His Dark Materials series. It's one of my favorite things we do together. Anyway. I realized I didn't know the last time I had checked my breasts. I don't know why I thought of it. I just did. Divine intervention, I suppose. I decided to check them then, while he read. Almost immediately, I felt it: a huge lump on my right breast. I kept feeling it, trying to figure out how big it was. I finally interrupted Kevin and told him to feel it. Weird, I thought; I'll have to ask Dr. K about it next week. I reached over to my bedside table, opened my notes app to the Dr. K page, and typed: "weird lump". 

I checked the spot a couple more times over the next few days, even outlined it with a pen, because I wasn't sure if it was getting smaller...or bigger.

Kevin came to my appointment with me, as he usually did. I had my exam, which always went quickly, and then I got dressed again and headed into Dr. K's office. He checked my blood sugar chart, and then he asked what questions I had for him. I reached for my phone and pulled out my list. I always had a list. I don't remember the questions any more, but then I got to the bottom of the list. Oh yeah! That weird lump. I told him; he asked if I could still feel it. I tried, and I could. He said let's watch it and check it again in two weeks. 

I'd forgotten to ask about my lump. Granted, I wasn't too worried about it at that point, but still. I'd forgotten to ask. Always write your questions down. Two weeks later, I still had the lump, and I was sent for an ultrasound, which led to the biopsy, which led to my diagnosis.

You can copy and paste these questions into a Word document or a notes app on your phone. Then delete the ones that don't apply to you, and add any other questions that you have. Print the list before your appointment, if you can, or email it to yourself so you have it. Put some space between each question so you can write down the responses, or bring a notebook and a couple pens or pencils. You can also jot down other questions that come to you during your appointment, because surely they will. Again, don't depend on your poor, overworked brain to remember everything. Actually, have a buddy come to your appointment and take notes for you. That's even better, especially in the beginning stages. My mother-in-law came to my early appointments with us and took notes so Kevin and I could just focus on what the doctors were saying. 

I now have a separate note page for questions for each doctor I see (including my son's pediatrician and cleft team), so that I can jot thoughts down as soon as I think of them, instead of having to rely on my very unreliable memory. This system works very well for me, and I feel much more confident and prepared for appointments. 

Here's the list of questions I brought to my first oncology appointments. Many of the questions may not apply to you at this time, but I left them in because they might spark another question for your circumstances. 

Surgical Oncology Questions:

• I would like to know everything possible. Please be open and honest with me.
• Have you ever had a pregnant patient with breast cancer?
• Please explain the pathology report. May I have a copy?
• Are further tests needed? When will they be scheduled? How long to get those results?
• Surgery? What is involved, how long is procedure? How long is the wait for surgery, when will it be scheduled? Lumpectomy? Mastectomy? Is it safer to remove both breasts?
• How long will it take to get the pathology report?
• How long is recovery time? How long will I need to be out of work? What should I tell my supervisor? Can I get a medical leave of absence form filled out from you, if needed?
• Genetic testing: do I need it? When would I schedule it? How does it factor into treatment? How will that change the surgery and or timeline?
• When will I know about chemotherapy, radiation, and other non-surgical treatments?
• Will I see an oncologist? When?
• What are the treatments for my type of cancer? Timeline for each?
• How will this treatment affect my life? Side effects?
• When will I have a treatment plan?
• What can I do differently right now to improve anything?
• How does my diabetes factor in?
• Will the baby need additional tests and monitoring because of this?
• Could breastfeeding still be an option?
• Can you recommend anyone for a second opinion?
• What would you do in my shoes? Or what would you recommend if you had a family member facing this?
• Can you point me in the right direction for figuring out insurance questions and coverage vs out of pocket costs?
• Do you have any handouts with information?

Medical Oncology Questions:

• When do I start?
• How often will I receive treatments?
• What type of treatment will I receive (pills, IV, etc.)? Names of medications that will be used?
• Will I have a port (also called a portacath)?
• Should I bring someone to my treatment sessions? Will I be able to drive afterwards?
  Is treatment on an outpatient basis?
• How long does each treatment last?
• Can I schedule treatments for after work?
• How can I expect to feel following treatments? Will I be out of commission following each treatment? If so, for how long?
• What medications will I have for side effects like nausea/vomiting, fevers, etc? What are the options, and how will my pregnancy and diabetes play into that?
• Can I expect to lose my hair? When?
• Other side effects I haven't considered?
• Is radiation definitely going to be required after surgery, or will that be determined based on how thoroughly the chemotherapy works? Would I receive it before surgery?
• Since surgery won't occur until after chemotherapy, when will my cancer be staged?
• What is my prognosis?
• Are clinical trials appropriate for my case?
• How soon after the delivery of the baby will I start back on chemo?
• Could breastfeeding be an option, even if just for the period of time before I restart?
• How will insurance and co-pays work? Who is the best person to ask about it?
• Do you recommend I see a geneticist? If so, what do I need to do to set that up? Should my close family members be doing anything special at this time?