Metastisized SCC, HPV & Occult Primary

spsandi102
spsandi102 Member Posts: 6
in Head and Neck Cancer #1

Just found this site and Discussion Board today and am hoping someone can share their experience with similar scenario.  My 73 year old husband was diagnosed in July with SCC, HPV16 with Occult Primary in the neck.  It had metastisized to his lymph nodes on the left side of the neck.  He had surgery in Ocotber, removed a large amoung of lymph nodes and only 1 tested postive for cancer however it had an Extracapular Extension (ECE).   Because of the ECE, the Dr's and NCCN recommend follow up with Radiation and Chemo.  Since the lymph node with the cancer was removed and any residue of Cancer is not visible through any scans.  We are having a difficult time understanding how they can perform radiation when they don't know where it came from (Occult) and they currently can't see any cancer.  My husband wants to wait 6 months and see if it reoccurs.  Why go through radiation/chemo if there is no cancer there???  Looking for guidance/thoughts.  I know the key is the ECE, but not finding a lot of information other than the definition:  Extracapsular extension (ECE) is the growth or spread. of tumor cells outside of the lymph node capsule.

 

Comments

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
    Sorry to hear about your husbands cancer dx...

    The cancer in the removed lymph node came from somewhere...  Your doctors have likely locations where it originated such as tonsils, base of tongue, etc...  It IS somewhere, it doesn't just pop up in the lymph node on it's own.  My own tumor was in the base of my tongue and didn't show on any scans.  My ENT took my tonsils out and took a biopsy on the base of my tongue and got lucky and hit it.

    The risk of the wait and see approach is that ECE  already suggests that the cancer is more aggressive than preferred, it actually ruptured the node and started to spread through the various layers of the capsule.  You could wait until the primary presents itself and in the mean time it could spread to his lungs...at which point you are in bigger trouble.  Though, in the grand scheme of things, even without the ECE with an occult primary you are going to do chemo and radiation to the likely areas of the oropharynx.

    The good news is that it's HPV related and thus has really great outcomes....though the treatment isn't all fun and games.  Lots of folks on here have gone through the treatment and many have had occult primaries as well.  I'm sure you'll get some additional feedback in the next few days.

    Good luck!

    Brandon

  • kgasmart
    kgasmart Member Posts: 64 Member
    #3
    Where would they radiate?

    Hi, sorry to hear about your situation; I had SCC HP16 with a tumor at the right base of tongue, had spread to one lymph node, no ECE though... the question I'd ask the docs is - look, if you don't know where the tumor is, exactly where are you going to radiate?

    Radiation is tough to endure, but it my case it was targeted specifically at the original site(s) of the cancer... in your husband's case, if they don't know the original site, it suggests they'd plan to zap a bigger area with the radiation. Which could mean more complications.

    I agree with Brandon that the risk of waiting is that it has already spread and could spread further. The benefit of waiting is the docs might be able to ID the primary site and then you could have more targeted radiation, hopefully with fewer of the lovely side effects that come with it.

    Maybe seek a second opinion?

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    A second opinion may be worth while as kgasmart suggests...

    Not sure where you are recieving care now but life is easier if they can locate the primary.  If you aren't already, maybe head to an academic medical center or NCI designated cancer center.  As I suggested in my earlier post, my ENT went looking for my primary.  I still had my tonsils so he went ahead and just took them out and then did a biopsy of the base of my tongue.  Maybe another ENT might have ideas on how to locate it.

  • spsandi102
    spsandi102 Member Posts: 6
    edited November 2019 #5
    johnsonbl said:

    Sorry to hear about your husbands cancer dx...

    The cancer in the removed lymph node came from somewhere...  Your doctors have likely locations where it originated such as tonsils, base of tongue, etc...  It IS somewhere, it doesn't just pop up in the lymph node on it's own.  My own tumor was in the base of my tongue and didn't show on any scans.  My ENT took my tonsils out and took a biopsy on the base of my tongue and got lucky and hit it.

    The risk of the wait and see approach is that ECE  already suggests that the cancer is more aggressive than preferred, it actually ruptured the node and started to spread through the various layers of the capsule.  You could wait until the primary presents itself and in the mean time it could spread to his lungs...at which point you are in bigger trouble.  Though, in the grand scheme of things, even without the ECE with an occult primary you are going to do chemo and radiation to the likely areas of the oropharynx.

    The good news is that it's HPV related and thus has really great outcomes....though the treatment isn't all fun and games.  Lots of folks on here have gone through the treatment and many have had occult primaries as well.  I'm sure you'll get some additional feedback in the next few days.

    Good luck!

    Brandon

    Piror to surgery, Endoscopy

    Piror to surgery, Endoscopy was done in the throat and 11 samples were taken.  All came back negative. He had tonsils removed as a kid.  Very frustrating.  Oncologist did say he would target the back of the tongue.  Not sure how he arrived at that.

  • Logan51
    Logan51 Member Posts: 468 Member
    #6
    Bit of a warning

    I was "unknown Primary," with two lymph nodes on the left side of my neck that ballooned out. Biopsy on the top came back positive for Nasopharyngeal/NPC. Rad Dr. ordered a second/11th hour biopsy for the ENT to try and find a place to target. None found, so they zapped me in 20 places and in retrospect/20-20 I am proof she did an overkill on the amount of Rads- so be wary of that. Yes, I'm over 10-1/2 years out to the good, but the Rad damage has me on a Feeding Tube for the rest of my life. 

    His being 73 might be another factor. I had just turned 55 when I went thru tx, so hopefully they will take his age into consideration and not go crazy with the amount of Rads.

    And I agree- a 2nd opinion at a major C Medical Center sounds like the correct next step.

     

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #7
    spsandi102 said:

    Piror to surgery, Endoscopy

    Piror to surgery, Endoscopy was done in the throat and 11 samples were taken.  All came back negative. He had tonsils removed as a kid.  Very frustrating.  Oncologist did say he would target the back of the tongue.  Not sure how he arrived at that.

    Back of tongue is the logical spot then...

    HPV that goes to the nodes most often originates from either the tonsils or back of tongue...  Chemo/Rad combo is pretty harsh...but it has a very high chance of cure, mid 90% 5 year survival rates.

    Bummer the biopsies didn't turn anything up.  You could certainly ask about the watch and wait, maybe you end up finding the primary.  I'm not sure I could wait though.

    Brandon

  • Alandon1
    Alandon1 Member Posts: 17
    #8
    Sorry you have to join our

    Sorry you have to join our site. Has your husband had a PET Scan yet?  Did it show any cancer areas? Not knowing with certainty where the original site is would be very frustratin. However radiating the cavity and especially the neck sides may stop the spread from the node Listen to your docs. Get a second opinion if you want but don't wait 6 months to act. 

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