perineural invasion of face due to squamous cell carcinoma advanced case

phill
phill Member Posts: 4

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

Comments

  • pegalina
    pegalina Member Posts: 42
    squamous cell

    Dear Phil, first I have to ask you how old your father is..2nd..was he in the navy..the reason I ask this is because my father died from squamous cell carcinoma..He died 25 yrs ago..however..I do not know your age nor your fathers age & if your father was in army, navy or marines..even if he wasnt I know a great deal about this cancer..It took half his head..he was left with a half a nose..1 eye..no upper palate in his mouth..but like I said this was 25 yrs ago..but the radiation on the head & neck is the same..I know your dad is suffering from terrible ear pain & problems on the right side of his face..I need to know if a MRI was done on your father starting probly above the shoulder..up his neck..etc?..or did they do a cat scan..I'm going to be very honest with you that u will probly not write back..U need to ask those doctors..do the scans show how far the squamous cell extends to..if those doctors are good..they will tell you its undetermined..meaning this..went thru this with my dad@ 19..I'm 48 now..this cancer strives on soft tissue..yea it can attach to bone..but where it spreads is open soft tissue..NO ONE told us this 25 yrs ago..& I swear to u..If your doctor doesnt give u a straight answer..he cant..because they dont know how far the squamous cell has spread until they open u up..If u dont believe me..ask your doctor..& I'll bet he'll ask you where u got this information from..I wish I knew where u were from or what is happening rite now..I'm not in the medical field but I've been in dentistry for 30 yrs..Please write me back..I'm truly concerned..Peggy

  • rickbeans
    rickbeans Member Posts: 1
    I had pretty much the same

    I had pretty much the same condition you describe...a large tumor on the side of my face...very aggressive...invaded a number of nerves...went undiagnosed for a time because its size led my doctors in a different direction...Anyway, had mohs surgery to remove the tumor...removed some nerves so I don't have total feeling on the side of my face near my ear/eye. Had plastic surgery...Underwent radiation...It's been 3 years and so far, so good. Good luck

  • adirondackgirl
    adirondackgirl Member Posts: 14
    scc

    Hi Phill. I just joined this site and see your post is one yr. old.  I hope you have gotten some good answers and treatment for your father.

    I had the same thing diagnosed July 2012 with an initial tumor invading the right nose. The MD's I saw at a leading research hospital told me the first  mode of treatment is surgery for scc. I had that but then the path. report showed perineural involvement. I had MOH's surgery and they got clean margins but mths. later found another 'pocket' underneath nose. Had to have right nose and reconstruction removed Jan. 2013 and the because of perineural involvement had to have 33 radiation treatments. Then 8 mths. later had a small spot of scc again in same area(either came back or was resistant to radiation) ; so Dec. 2013 had a wider resection surgery where they took part of my cheekbone/part of cheek and now am unreconstructed for at least 2 yrs. as they want to make sure no cancer returns.

    I have seen several oncologists and done alot of research and they have told me that surgery is 1st treatment and then radiation if needed. They told me chemo doesn't work with scc unless the scc is very topical and then they can do a topical chemo; but mostly they would do MOH's surgery.

    I hope things have gotten better for your father and he got the treatment he needed. I pray I'll hear good news back from you.

    Blessings,

    Adirondackgirl

  • Rague
    Rague Member Posts: 3,653 Member
    pegalina said:

    squamous cell

    Dear Phil, first I have to ask you how old your father is..2nd..was he in the navy..the reason I ask this is because my father died from squamous cell carcinoma..He died 25 yrs ago..however..I do not know your age nor your fathers age & if your father was in army, navy or marines..even if he wasnt I know a great deal about this cancer..It took half his head..he was left with a half a nose..1 eye..no upper palate in his mouth..but like I said this was 25 yrs ago..but the radiation on the head & neck is the same..I know your dad is suffering from terrible ear pain & problems on the right side of his face..I need to know if a MRI was done on your father starting probly above the shoulder..up his neck..etc?..or did they do a cat scan..I'm going to be very honest with you that u will probly not write back..U need to ask those doctors..do the scans show how far the squamous cell extends to..if those doctors are good..they will tell you its undetermined..meaning this..went thru this with my dad@ 19..I'm 48 now..this cancer strives on soft tissue..yea it can attach to bone..but where it spreads is open soft tissue..NO ONE told us this 25 yrs ago..& I swear to u..If your doctor doesnt give u a straight answer..he cant..because they dont know how far the squamous cell has spread until they open u up..If u dont believe me..ask your doctor..& I'll bet he'll ask you where u got this information from..I wish I knew where u were from or what is happening rite now..I'm not in the medical field but I've been in dentistry for 30 yrs..Please write me back..I'm truly concerned..Peggy

    SCC, SCIS, BCC

    Hello!

    May I ask why you asked about military service?  I was Army.  Most of my life has been spent at least around military bases.  I was born Army, when Air Force was formed Daddy transferred to it and retired after 26 years AD.  I was Army, married to a Navy guy (air crew - not ship's company) 

    for 19 1/2 of his 20 years.  For the last 10 years have lived under the flight path for an AF base.  I never thought of a possible correlation to being around bases for so many years in one way or anot

    her.  I thought it was my life spent outdoors and being very 'ghostly' where not tanned and as pale as I am I tan easy and not burn. (I'm 67.) 

     

     

    July 2013, I had biopsies done on 3 very small 'spots',  1 on arm, 2 on face.  The one on arm was totally new, never be

    en frozen off before and it  came back positive for Basal Cell Carcinoma but got good margins.  The one on right side of face near ear (had beem frozen off twice before) came back as Squamous Cell Carcinom a with the path. saying that it had been entirely gotten in the punch biopsy with good margins.  The one on left cheek came back as Squamous Cell In Situ.  The path. on it

     

    when removed said margins were good.  Unfortunately, there is now another small spot somewhat near the SCIS that is sispicious to me amd my PA so on Mar 4, I off for more biopsie

    s (also several small dots I c

    an feel on nose - over the years have had several pre-cancer spots frozen off).

     

     

     

    If anyone reads my Profile, you will see that I am a 4 1/2 yrs Inflmmatory Breast Cancer survivor and am still NED.  While IBC does 'like' to invade the skin (among other sites)- my issues with BCC, SCC, and SCIS have no relation to the IBC.  Last Thurs (2/20) I had a full body (including head) Bone Scan to be on the safe side as I've had more pain in back (lots of arthritis and osteoporosis) recently in somewhat different areas - my PA's RN called me Fri afternoon with the results - no mets/cancer anywhere in bones.

     

     

    So far, nothing has been said about chemo or rads or major surgery.  So far my incisions have been an inch or less.  Having done neoadjuvant and adjuvant chemo - chemo would not scare me - the thought of rads petrifies me!   I burned horribly (have the scars to prove it) with rads - last rad in March and finally healed in late June.  

     

    Anyone know any good sites for finding info.  Basically, the sites I've found aren't giving me the answers I'

    m looking for or making sense to me.  

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    ?

  • Rague
    Rague Member Posts: 3,653 Member
    Rague said:

    SCC, SCIS, BCC

    Hello!

    May I ask why you asked about military service?  I was Army.  Most of my life has been spent at least around military bases.  I was born Army, when Air Force was formed Daddy transferred to it and retired after 26 years AD.  I was Army, married to a Navy guy (air crew - not ship's company) 

    for 19 1/2 of his 20 years.  For the last 10 years have lived under the flight path for an AF base.  I never thought of a possible correlation to being around bases for so many years in one way or anot

    her.  I thought it was my life spent outdoors and being very 'ghostly' where not tanned and as pale as I am I tan easy and not burn. (I'm 67.) 

     

     

    July 2013, I had biopsies done on 3 very small 'spots',  1 on arm, 2 on face.  The one on arm was totally new, never be

    en frozen off before and it  came back positive for Basal Cell Carcinoma but got good margins.  The one on right side of face near ear (had beem frozen off twice before) came back as Squamous Cell Carcinom a with the path. saying that it had been entirely gotten in the punch biopsy with good margins.  The one on left cheek came back as Squamous Cell In Situ.  The path. on it

     

    when removed said margins were good.  Unfortunately, there is now another small spot somewhat near the SCIS that is sispicious to me amd my PA so on Mar 4, I off for more biopsie

    s (also several small dots I c

    an feel on nose - over the years have had several pre-cancer spots frozen off).

     

     

     

    If anyone reads my Profile, you will see that I am a 4 1/2 yrs Inflmmatory Breast Cancer survivor and am still NED.  While IBC does 'like' to invade the skin (among other sites)- my issues with BCC, SCC, and SCIS have no relation to the IBC.  Last Thurs (2/20) I had a full body (including head) Bone Scan to be on the safe side as I've had more pain in back (lots of arthritis and osteoporosis) recently in somewhat different areas - my PA's RN called me Fri afternoon with the results - no mets/cancer anywhere in bones.

     

     

    So far, nothing has been said about chemo or rads or major surgery.  So far my incisions have been an inch or less.  Having done neoadjuvant and adjuvant chemo - chemo would not scare me - the thought of rads petrifies me!   I burned horribly (have the scars to prove it) with rads - last rad in March and finally healed in late June.  

     

    Anyone know any good sites for finding info.  Basically, the sites I've found aren't giving me the answers I'

    m looking for or making sense to me.  

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    ?

    Hope you can make semse of my post!

    Hope you can make sense of my post.  Using my tablet and it seems to have just ran everything together.  Sorry and for rambling.

    Winyan - The Power Within

    Susan