Back on March 30, 2018 I got diagnosed with HPV Throat Cancer.  3 lymph nodes were removed from the left side of my neck – two tested positive, one negative.  Since it was HPV related, they still needed to find the source -meaning where the cancer was coming from and also to see if it was operable.  I was told the next step was to meet with an ENT surgeon to have a laryngoscopy to find the source.  (More on laryngoscopy in this post.)

Having never been through this before, I was in the dark – completely clueless as to what information I needed to know or even questions to ask the doctor.  You know that saying “You don’t know what you don’t know”.  Yep – that was me!!

I’m fortunate to have a supportive friend who had just been through it himself and had also been a medical doctor at one point in his career.   He knew the lingo and all the right questions to ask his own surgeon and  was so helpful in sharing those questions with me.

If you were like me and have no clue what to even ask, these questions are a good starting point.  Remember to bring  a notebook and pen with you to write everything down.  DO NOT rely on your memory!!  It’s also a good idea to bring someone with you because they may hear something you don’t or have other questions come up that you didn’t even think of.

Here you go…

1 – How big is the tumor – in inches and T1-T4 stage?

2 – Where, in precise anatomical terms, is the tumor located?

3 – Which important anatomical structures are close to the tumor–for instance vocal cords, recurrent laryngeal nerve, opening of esophagus, epiglottis?

4 – How concerned are you about spread to the other side of my neck?

This question depends on where your initial lumps and source are found.  Mine were in 2 lymph nodes on the left side of my neck and the source was on the back of my tongue.  More about my initial findings in this and this post.

5 – What are my treatment options?

6 – What are the side-effects, complications of these options?

7 – What’s my prognosis?

8 – Will my case be presented at tumor board?

I had NO CLUE what a tumor board was so would never think to ask this question!  To my understanding a tumor board is basically when your surgeon presents your case, test results and findings to a group of doctors that he/she works with so they can all discuss findings, treatment options, etc. so you are getting opinions from a collective group rather than just one doctor.  They usually meet once a week.

If surgical option…

9 – Who in the practice is most experienced resecting tumors of this type and in this location?

10 – If you had my tumor which surgeon would you want to remove it?

I hope these questions will help you to feel more empowered and secure that you’re taking charge of your life and not just leaving it in the hands of others.  Please remember I’m just sharing MY experience.  I’m not a medical professional.

I want to pass on advice that a breast cancer survivor friend of mine told me when I was at this point…

You are gathering facts.  That’s it.  You’re not at the decision making stage.
You’re at the fact gathering stage.  Once you have all the facts, THEN you make your decisions on how to proceed.

I want to add something else.  Once you have all the facts, remember also to listen to your intuition.  Make decisions based on what YOU think is best for you, not what OTHER PEOPLE think is best for you.  Be your own advocate!

I made a printable version of the questions  – you can grab it here.

As always, let me know if you have any questions and if you know someone that could benefit from this post, please share it.