Squamous cell carcinoma (SSC) with perineural invasion (PNI)

Posted by pamwill1960 @pamwill1960, Apr 11, 2024

Hi,my name is Pam and I am 63 retired from Massachusetts. I was diagnosed with SSC with PNI of the right nostril after being originally diagnosed by dermatologist with Impotego and multiple wasted weeks of antibiotics that did nothing. On 1/25 my Primary told me to get a biopsy by Dermatologist, which I did and had result of SSC by 1/29. She recommended Mohs surgeon in her office which I agreed to and had Surgery on 2/7. After the first cut he came back and said "this can kill you". I was a nervous wreck from there on!! He told me I would need to be referred to Oncologist afterward and where would I like to go, Boston MA or Worcester MA. After 4 passes he recieved clear margins, but he was no where to be found. The surgical assistant wrapped my nose without any attempt at reconstruction. I was left with huge hole in and under lower nostril. On 2/15 I had appointment with Oncologist at MEE and was given options of 30 radiation treatments or CT scans every 3 months. I had read so much bad about radiation that I chose the easy way. I started procrastinating very soon and called Oncoligist for consultation with Radiologist. The appointment with the Radiologist was where I learned that I was Stage 3c because of the PNI and my light skin,hair and eyes. He did tell me that after Radiation it will be near impossible for good results for reconstruction because the facial skin becomes thin.

I have consult with Plastic Surgeon tomorrow to see what can be done to enlarge the nostril that is about half of its original size. I need to get this completed so I can get the radiation done, I want to live!!!

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

bowheme | @bowheme | Apr 8 9:49am

Hi Pam,
This is the first time I’ve found actual humans who are dealing with the same issues that I have been dealing with for the past three years. I had a suspicious spot on my cheek that was biopsied (scrape) in 2020 and found to be an irritated Nevus (benign). Less than three years later, I started getting the electric shock pains in my cheek and eye area. I had an MRI and was sent to a neurologist. Who suggested I urgently see a dermatologist. It took six months to get to surgery. At that point, my cancer was a late stage basosquamous cell carcinoma with PNI. Unfortunately, they were unable to get clear margins. The primary spread was to my infraorbital nerve in addition to other smaller nerves. I’ve had radical resection with neck flap, then eye surgery to correct the ectropian caused by the original surgery. I also underwent daily radiation for seven weeks. While my cancer is stable, I now have complete facial paralysis on my right side and I’m unable to close my right eye completely. How are you doing?

dreamer3 | @dreamer3 | Apr 10 8:53am

In reply to @louisejewell "don't hesitate to do the radiation. I've posted my story below." + (show)

@louisejewell hi I’m new here, I can’t find your story

louisejewell | @louisejewell | Apr 22 11:02am

In reply to @dreamer3 "@louisejewell hi I’m new here, I can’t find your story" + (show)

@dreamer3 Wish I could tell you where to find it but to say it quick: I started 2 yrs ago w/squamous cell invasion into my lymph node in neck...after lots of MOHS over the years. I did radiation 2x, on my forehead and by my ear where I had large growth removed surgically. I then started w/Libtayo every 3 weeks, PET scans and Signatera ctDNA monitoring as I went on.
I had no ill effects from Libtayo and my scc breakouts stopped. However, 2 nodes in my neck were treated by ablation successfully last year. Recently my signatera numbers went from 1.74 to 30! and PET lit up in my chest where there are nodes. My Mayo oncologists suggested more serious immunotherapy but I continued with Libtayo and just had my numbers go back down to 1.17 followed up by a PET with nothing lit up! I'm so excited even though I know it may not be long term, I'm enjoying it for the moment. We have a new plan of Libtayo double dosage but every 6 weeks saving me 4 hrs. travel and freeing my med schedule. If you have any other questions, I'd be happy to share.

louisejewell | @louisejewell | Apr 22 11:17am

I just read your story after I shared mine...yours sounds even more serious than mine because I didn't have PNI. I hope you have the best treatment facility you can get. I'm at Mayo in Jacksonville and they are amazing. I'm no dr. but feel like you might be helped by some of the immunotherapies like libtayo which is cempilimab or the more serious cetuximab...you must advocate for yourself and not rely on what's offered. The signatera test of ctDNA uses a sample of the cancer they took out of your nose (which I hope they saved) and measures it anywhere it is in your system. It will detect findings way before they'd show on a ct or pet. And...why aren't they doing PET of your whole body? Like I said...research on the hospital websites like Mayo and ask for more from your drs. I have a great team at Mayo and they are constantly reviewing my condition. Make your own Good Luck.

louisejewell | @louisejewell | Apr 22 11:20am

In reply to @bowheme "Hi Pam, This is the first time I’ve found actual humans who are dealing with the..." + (show)

@bowheme sorry I got Pam mixed up with your recent post, so I guess I mean it all for you since you're dealing with it right now.

moorjan3 | @moorjan3 | May 21 7:36am

In reply to @dsh33782 "Pam I've had Mohs surgery on upper lip with 14 stitches to remove basil cells. It..." + (show)

@dsh33782 Can you comment on how long it took for this to heal and you swelling to subside - coming closely back to normal? I have a similar situation and am 7 weeks out from my surgery. It is still very uncomfortable although has slowly progressed.