Hello my name is Netsy . First time poster ,lurker since August 09 when my Dad was dx with SCC of the Buccal mucosa. Stg 3... T2NIMO extracapsular spread. My sister and I are primary caregivers to our dad since our mom died of breast cancer in '02. Don't know where to begin sobbing as I type. I HATE this incidious disease. Dad 67yo had 8 hr surgery in 9/09 to remove cancer with reconstruction using forearm-flap. BTW non smoker non drinker. This followed by 7 wks rad 6000rads brutal regimen. He was such a trooper so proud of him and love him so much. Follwoing completion of rad in Jan... 1.5 months ago started with head and neck pain now has other symptoms pupils not same size droppy eyelid tongue swollen on one side neuralgia- like pain. MRI showed possibility of perineural invasion. PET tomorrow. He is scared and depressed. Has anyone traveled down this road and what can be done is it more pallative at this point? HELP!

Hi Netsy

i think the best thing to do for now is hope that this is no more than radiation damage to his trigeminal nerve,fibrosis possibly from the radiotherapyand other general gifts from treatment.All of the above could account from most of his symptoms.It is such a short time span from completion of his radiotherapy to developing these problems .How did his scans look at diagnosis and what did they see during surgery?I know from personal experience that recurrance can hit hard and fast,but please try not to think the worst straight away.

Liz thank you so much for your kind response. He did not have a PET prior to surgery. Just CAT. I hope that it is what you said only that his surgeon said symptoms are worrisome. I noticed that your dear husband had it hit hard and furious on the reoccurence. This disease just makes me SCREAM! I am flying up there this noon time to give my sister a break. I just want to be there with him since he is a widower and lives alone:(

Netsky,

A lot of us here have aches and pains following radiation. I had ear, tongue, and jaw pain. I was worried, but have found them to be fading away slowly and almost gone now that I am 6 months out. I had no neurological difficulties though.

Treatment affects us all differently, but most of us have found that we can return to a mostly normal life � the new normal�. Hopefully you dads PET comes up clean and these are all just radiations lingering effects. They can be dealt with and this forum is a great place to come to find answers and suggestions in how to deal with the gift that keeps on giving, which is how we refer to radiation here.

Keep us posted on your dad�s results.

Thanks Kelly for your kind words of encouragement Kelly! I will be posted again later in week.