Perineural Spread?

riles89
riles89 Member Posts: 16
in Head and Neck Cancer #1

Hi all,

I am wondering if anyone has had experience with perineural spread? My fiance had two good scans January and April of this year following surgery, radiation, and chemo for SCC base of tongue. Post-surgery and in the radiation planning process there still appeared to be spread along V3 nerve. January MRI and PET/CT were OK. April MRI showed some asymmetric enhancement around a portion of V3, which was believed to be radiation treatment influence.

He had a scan last week, and the MRI showed some more enhancement along V3 and some other areas. PET/CT showed no signs of tumor recurrence, but ENT would like to do a biopsy--of which my fiance would have to go under anesthesia and the biopsy would be completed through the nose.

I've been reading and reading so much literature on the head and neck--more than I need for a lifetime--and most situations involving nerve spread say things that aren't optimistic. It can be managed, but can be difficult and there "needs to be more research." Amazing how my fiance's tongue can be reconstructed with a free flap from his forearm and reading scan images can be difficult.

Needless to say I am very nervous. If anyone has any information or experience, as a caregiver or patient, regarding perineural spread (PNS), please let me know. I would so much appreciate it.

All best,

Megan

Comments

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
    No personal experience to share...

    But I know many of the wise, wise folks on this board are going to remind you that it's not cancer until the biopsy confirms it.  So, stay positive and take it one day at a time.

    Best of luck!

    Brandon

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    edited July 2018 #3
    Biopsy

    Since they see an area they are concerned about something could need attention

    and a biopsy will confirm one way or the other.

    You've gone this far and had surgery and treatment I would say get the biopsy to know

    one way or the other.

    Like johnsonbl says it's not cancer till they say it is.

    And the sooner it is gotten and the smaller it is the better.

    Keep on the positive side and don't over read on the subject all cases vary.

     

  • riles89
    riles89 Member Posts: 16
    #4
    OK, thank you wbcgaruss and

    OK, thank you wbcgaruss and johnsonbl. I will try to stay positive. Unfortunately the biopsy was pushed back due to limited OR time.

  • swopoe
    swopoe Member Posts: 492
    #5
     My husband was diagnosed

     My husband was diagnosed with tongue cancer in October 2015. After surgery, were told he had slight perineural invasion. So even though they got clean margins in the surgery and the cancer was stage 1, he had chemo and radiation. He has been NED since with no perineural spread. I am hoping your fiancé’s biopsy comes back negative, but I wanted to let you know that you were not alone in having to deal with perinerual invasion. Hugs and best of luck to both of you.

  • riles89
    riles89 Member Posts: 16
    #6
    swopoe said:

     My husband was diagnosed

     My husband was diagnosed with tongue cancer in October 2015. After surgery, were told he had slight perineural invasion. So even though they got clean margins in the surgery and the cancer was stage 1, he had chemo and radiation. He has been NED since with no perineural spread. I am hoping your fiancé’s biopsy comes back negative, but I wanted to let you know that you were not alone in having to deal with perinerual invasion. Hugs and best of luck to both of you.

    Thank you swopoe. I have been

    Thank you swopoe. I have been reading that perineural spread is "rare," so it is nice to hear a success story (I know I have to stop reading!). My fiance has already had radiation and chemo following surgery last August, so I am hoping that if it is back treatment could be continued. Thank you for your reponse.

  • Julban
    Julban Member Posts: 2
    edited July 2018 #7
    SCC with Perineural

    My husband was diagnoised last January with perineural spread.  15 months earlier he had a small SCC on right temple removed.  We know now he had symptoms of perineural but no one caught it & he was misdiagnoised with mutlitple things for 15 months.  It is very rare, they said out of the millions that get SCC, 1000 per year get perineural.   They did the biopsy in March & even though it sounded so scarey, he walked back to the hotel that night because he didn't want to stay in the hopital.  He completed 35 proton treatments & 3 rounds of chemo/cisplatin on May 30th.  Reading about it is so disheartening.  But then I would look at the date of the article & it was 5,10 12 years ago & so much advancement has been made.   We are far from out of the woods but if I can help, please message me.  

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