Newly Diagnosed and Confused About Scans

nodaybuttoday
nodaybuttoday Member Posts: 3
in Head and Neck Cancer #1

Hi, all.  This is my first post but I have been reading for the past week or so and I really appreciate the information and advice you all have been generous enough to share.  I'll try to keep this brief.

 

I have been diagnosed with SCC of the soft palate/throat.  I had CT scans done, which the doctor said showed no spread to my lungs, but two lymph nodes which he called "suspicious for involvement."  He and the cancer review board (or whatever it's called) suggest radiation and chemo.  If I understand correctly, the radiation is standard treatment for this and the chemo is because the lymph nodes are/might be involved.

 

This doctor has a website where test results are posted.  I looked at the reports for the CT scans this morning and am very confused.  The findings say, "No appreciable enhancing soft tissue mass is seen involving the soft palate," and, "No enhancing pharyngeal mucosal space mass especially no appreciable soft palate mass is noted."  It goes on to describe my tongue, tonsils, nasopharynx, oropharynx, etc. as normal or unremarkable.  It says there are "no enhancing neck masses" and "no significantly enlarged lymph nodes." 

 

The only two statements on the report that seem to be "abnormal" or troublesome are the following:

 

Minimally prominent left level II lymph node

Tiny low-attenuation nodules are seen involving both thyroid lobes one on left side measuring 6 mm

 

I'm obviously not a doctor and I know none of you are either.  But this makes no sense at all to me.  How can these test results seem so positive and unremarkable, yet still somehow mean I need chemo and radiation?  And the doctor kept talking about a tumor on my soft palate/throat.  These results specifically say there is NO mass on my soft palate or pharyngeal mucosal space. 

 

I fully admit I am a nervous wreck over all this and that my brain has all but shut down, so maybe I am missing something obvious?  I know I should be asking the doctor these questions and I suppose I will at some point soon.  Right now, though, the thought of trying to deal with him is making me want to throw up.

 

I would appreciate ANY insight I can get from anyone who has experience with all this.

Comments

  • swopoe
    swopoe Member Posts: 492
    #2
    Have you had a biopsy? My

    Have you had a biopsy? My husband's biopsy showed cancer of the oral tongue, but the first CT scan showe no mass on the oral tongue. It was confusing to us too. But he still had cancer, stage 1, and had surgery, chemo, and rads. Have you discussed the CT results with your doctor yet? I am sorry you have to be here, but you have found a good group. We are here for you.

  • HelenBack
    HelenBack Member Posts: 87 Member
    edited September 2016 #3
    scans

    Yeah, I agree with swopoe. I'm assuming you were diagnosed with a biopsy? And now a CT (not PETCT?, which shows metabolic activity suggestive of cancer) is unremarkable.  My husband's PET CT didn't show that he had multiple nodes involved-only discovered later with surgery. Also, CT's are used to set a baseline so further down the road they have something to compare future scans to. 

    As for treatment--chemoradiation is the standard protocol for all the head and neck cancers (with some variations) and with good results. I have heard of some patients getting only radiation without chemo if it is confirmed (which is only truly possible with surgery) that there is no lymph node involvement. It's pretty unusual though as most head and neck cancer is discovered first because of a swollen lymph node.

    Of course you're frazzled, and I would suggest that you write down your questions for the doctor before your appointments and if you can, record the conversation (do you have a smart phone?) that can help if your head is spinning too much to absorb the info. I'm a firm believer that you should not let the doctor leave the room untill you feel like all your questions are answered no matter how hurried they might seem. It's tough these days, but it's your right. And don't feel shy about getting a second opinion, any doctor would expect their patients to do so.

    Good Luck,

    Helen

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    welcome

    nodaybuttoday,

    Welcome to the H&N forum, sorry that you are here.

    You are correct, I am not a doctor and  while your report is generally good there are some suspicious areas which are noted and may require a more detailed study.

    As swopoe mentioned, I would say almost all of us at one time or another had a biopsy to confirm the cancer.  There are times when the primary is not found, but they identify all areas of activity in question.

    You need to put aside  the nervousness and ask for an upfront, layman’s answer and explanation to what has happened to date.

    You also may want a 2nd opinion.

    Matt

  • nodaybuttoday
    nodaybuttoday Member Posts: 3
    #5
    Thank you for the replies. 

    Thank you for the replies.  Yes, I had a biopsy which confirmed the cancer.  I had an appointment last week to get the results of the CT scans but the doctor only said that it might have spread to two lymph nodes but not to my lungs.  He didn't give any further details or information and I didn't know what questions to ask.  I just saw the actual report online this morning, which led to the confusion.  I mean, I know the biopsy wasn't wrong, but I don't understand how the doctor could stick his finger in my throat and feel what he calls a tumor that is bigger than 2 cm, yet it didn't appear to show up at all on the scans.

     

    In any event, I found out a few minutes ago that I will have my first meeting with the chemo doctor tomorrow, so I will talk with him about it.

     

    It's helpful to learn that chemo and radiation are the standard treatment.  I was first told they would just do surgery and cut it out.  Then I was told, no, radiation would probably be the best option and I may or may not also need surgery.  Now the latest is no surgery but both radiation and chemo.  This has just been a whirlwind, with these three different scenarios presented in less than three weeks time.  To say my head is spinning could not be more of an understatement.

     

    Thanks also for the suggestion to record all these appointments on my phone and to write down questions.  I'm trying to learn what questions I need to ask, and I'm having to do it so quickly.  This site has provided a lot of help in that regard and I'm very grateful I've found it.

     

    Again, I really appreciate the responses and the information.  I'm trying to stay positive and get on top of this so I can fight it, but I'm just overwhelmed right now.  Your calm "voices" help a bit.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    i want all the answers

    nodaybuttoday,

    Many of us had to make the decisions concerning surgery, radiation and chemo and many of us were learning on the fly.  I chose to cut it out first, I wanted it gone, but others choose to radiate and chemo with no surgery and it just dissolves away.

    It is hard and your doctors will not let you make a bad decision and this day will be behind you and you can concentrate on bigger issues and then the bigger issues get solved and you are finished.

    The end.

    Matt

  • nodaybuttoday
    nodaybuttoday Member Posts: 3
    #7
    Thank you, Matt.  Your words

    Thank you, Matt.  Your words are very encouraging.  Just knowing there will eventually be a "you are finished, the end" is so comforting.

    I met with the chemo guy today.  I suppose I should use the correct terminology and call him the medical oncologist?  Anyway, he said the tumor probably didn't show up on the CT scan because of scatter of the waves caused by my teeth.  He worded the explanation better, I'm sure, and it made sense, so I feel better about that part of it.  I'll have a PET scan done next week and maybe that will give a better "picture" of what we're dealing with.

     

    I also need to get an echo done since I have Congestive Heart Failure and an ICD (kind of like a pacemaker).  He said the rads and the ICD aren't a good combo.  I'll ask the radiation oncologist more about that when I meet her next week but is anyone familiar with that particular issue?

     

    On a positive note, I saw the dental oncologist this morning, too, and I won't need any extractions!  Since the only thing I dislike more than doctors is dentists, I'm absolutely thrilled by this news!

     

    Thanks again!

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