Surgery Only choice

Kathy1950
Kathy1950 Member Posts: 1
in Head and Neck Cancer #1

HI All,

I have been reading these forums and noted so many people having radiation and/or chemo, but my situation so far has been just surgery. Two of them.  For HPV positive, SCC of the tonsil with one node involved.  I was diagnosed in November 2018 after a bilateral tonsillectomy due to growth of one tonsil.  In January, after a PET scan, I had a modified neck dissection which showed 1 node was involved and 38 others were not but were also removed at that time.  I have clear margins.  After the second surgery I consulted with 3 different radiation specialists and ended up rather confused:  one said he was on the fence regarding whether or not I should have radiation; one said he would not if it were himself or his mother in my position; and another said I should definitely have it!  (the "no" and the "yes" were at the same cancer center but at different sites). Also, after my first surgery I was presented to a tumor board who said that if anyone could go without radiation I would be that person.  So, after two attempts at simulation (mask made, attached to table, CAT scan) which required enormous amounts of anti-anxiety meds since I have severe claustrophobia, I rethought my decision and chose to forego radiation and instead be followed by my ENT every month who does a thorough exam.  Has anyone here just had surgery and been monitored afterward? 

Comments

  • kgasmart
    kgasmart Member Posts: 64 Member
    #2
    I did have radiation, but...

    Was in a situation similar to yours, HPV SCC base of tongue, one node involved but they took a total of 57 on both sides. My surgeon recommended a lower dose of radiation, saying recent studies show it's as effective as higher dosages; "Some people walk away at this point but I don't recommend it," he said.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited March 2019 #3
    WELCOME

    Kathy1950,

    Welcome to the H&N forum. Your choice of which “treatment path” to follow is very much like other members in this forum. (side note: is the correct term “in this forum ”or  “on this forum”?).

    Just think of your choice to NOT have rads now, as keeping the rads in reserve, “just in case”. You can blast away later if needed.

    I did suffer from anxiety when under the influence of the dreaded mask, but my 1 Lorazepam was enough to help me actually find the time receiving rads as very interesting.

    To really be accurate in comparing each of these three doctors to each other with the choice to rad or not to rad, you would need to get each of them to answer the same questions and limit the differential character of each. Needless to say, you do have a choice and it is based on, what sounds like a pretty thorough examination including a neck dissection.  You have been well taken care of.

    If your monthly exams continue to show ALL CLEAR your doctor may lengthen the time out to 3 months, 6 months, a year. After a period of good appointments you will be bordering on NED and all will be good in your world.

    Take care,

    Matt

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    Congrats on catching it so early...

    That you only needed surgery.  The NCCN guidelines do recommend surgery only if your primary is stage 1 with a single node involved less than 3 cm and no other adverse features.  So if they got good margin on your primary and your neck dissection was successful then you can forgoe any further treatment and just watch.  Its a great situation to be in...  Now you have all 3 treatments still available to you if something goes awry.

    Good luck at your follow-ups in the future!

    Brandon

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