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perineural invasion of face due to squamous cell carcinoma advanced case

phill
Posts: 4
Joined: Mar 2013

My dad's was finally diagnosed with squamous cell carcinonoma that has infiltrated his facial nerves.  He went undiagnosed by doctors for five months with terrible ear pain and now some paraysis of right side of face. No excision being done, only radiation recommended. Have read that chemo with radiation may be better, findings are inconclusive. he will be starting radiation next week. Does anyone have experience, a good story or information that would be helpful? If this doesn't work, what else is there? the doctors are not saying anything negative, or much... Really worried. Any thoughts out there?

Thanks

Patricia

KTeacher
Posts: 993
Joined: Jan 2011

I am usually on the Head and Neck site but thought that I would check this out.  In August 2010 I had my first cancer (Oral).  Lump on the right side of my upper lip.  One inch of my lip was removed followed by radiation.  I also had perineural invasion.  Not easy to find information on it.  One hear later I had a lump on the left side of my neck.  Surgery (neck disection) followed by radiation.  This passed Sept, I started having double vision.  After many appointments and a biopsy I found out the cancer had moved up the nerves in my cheek and down the orbital nerve.  I had to have my eye removed in November and I just finished chemo and radiation this time.  I would push for chemo to go along with radiation if I knew what I do now.  Feel free to message me if you have any questions about treatment.

Bev

punchy
Posts: 1
Joined: May 2013

This sounds exactly like what my husband is currently dealing with.  We have been through 2 MRIs which showed clear and waiting for the ENT doctor to talk with the Mohs surgeon to get a plan of action.  In the meantime he has lost the ability to blink his left eye, has numbness in his left cheek and terrible pain behind the left ear.  He also has a knot on his left eyebrow that has been biopsied and come back Squamous Cell Carcinoma.  It has gotten much bigger since the biopsy 2 weeks ago.

I am very worried and very frustrated that his condition has deteriorated through all this.  Has your father gotten any relief with the radiation?  Any update would be appreciated. 

Thanks, Leigh

TexasJan
Posts: 1
Joined: Aug 2013

My squamous was found under right nostril, surgeon removed right sinus area, most of the cheek flesh and some bone.  Somewhere a spot was missed and I am on Tarceva which has stoped progress but is rough on my body.  Every day a different side effect.  Major surgery was 6 months ago, today my lips are blistered and swollen to double size, the only relief I can get is by putting Sesame Oil on lips.  Candida is a continual problem 

 

Any one in this position?

 

 

Jan

KTeacher
Posts: 993
Joined: Jan 2011

I have been fighting the beast since 2010.  SCC on right upper lip, perineural invasion.  1 inch of lip removed, 50 stitches, surgery followed by radiation.  1 year later, lump on left side of neck, neck dissection followed by radiation.  Nov. 2012,  invaded optic nerve, double vision.  Eye removed followed by chemo and radiation.  During treatment I had an abcess in my sinus, back to the hospital for IV antiobotic and surgery.  Starting to have pain in right cheek area, numb on cheek and chin.  Went to Stanford last week for routine check up, ended up with an MRI.  Cancer is back.  Waiting for a call about next treatment, maybe Cyberknife.  I hear you about the thrush.  The first time I had it throughout treatment, lots of Nystatin.  Lips so dry that I have Aquaphor with me constantly!  Feel free to pm me.

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