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Squamous cell carcinoma (SSC) with perineural invasion (PNI)
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!!!
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Pam
I've had Mohs surgery on upper lip with 14 stitches to remove basil cells. It has taken a long time to heal and the swelling to go down, but it is better now.
I will be anxious to hear what the plastic surgeon recommends? They can do amazing work.
Don
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1 ReactionHi Pam, I had Mohs surgery on the top of my head for a Squamous cell carcinoma that went undetected until it got quite large. Originally diagnosed as actinic keratosis and treated with cortisone cream. After the second cut I felt hustled out of the office because it was closing time. Tests came back negative, margins clear, CT scan showed no evidence of lymph node or other problem. Genetic test came back "intermediate" risk , (fair skin) so radiation therapy recommended. I declined. Radiation on the top of my head didn't sound appealing. I am scheduled for CT scan in 3 mo. I am very interested to hear how you made out with your plastic surgeon and radiation therapy. Hope everything is going well for you. Margaret
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2 ReactionsHi Don, The Plastic Surgeon recommended Nasal reconstruction with open septorhinoplasty with a cartilage graft and scar release. She said that it takes a whole year for the skin to totally heal. She wasn't clear about increasing the size of the r nostril. I think she is concerned that the cartilage that was removed during surgery could collapse. I am afraid that I will go through this surgery and then the cancer will return.
After leaving her office I have questions of timing. Thank God for Patient Portals. I plan on putting all my thoughts and questions together about timing of this surgery and how long would I would need to wait to get radiation! She was confident that she could release the scar tissue that is also pulling up my right lip.
Did you have reconstruction after your Surgery!
Pam
Hi Margaret, You and I sound quite familiar when it comes to the thought of Radiation!
The Plastic Surgeon was very nice and definitely knows her business. There was cartilage removed from my Nasal cavity and she was concentrating on discussing replacing the cartilage so the nose does not collapse, although it feels fine. I am going to write to her to discuss healing time in relation to scheduling radiation.
Good Luck
Pam
No I have not had any reconstruction. My upper lip is still swollen but I think it is going to be ok. If you didn't get all your questions answered, you may want to get a second opion?
Don
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1 ReactionHi Pam, your situation sounds so similar to mine. Biopsy, MOHS (with 6 passes, it had gone into the muscle) ostensibly clear margins, BUT here is where our story differs. I had immediate reconstructive surgery 5 days later. The hole was under my eye, and very deep. About a month after surgery I had shooting pains. Extreme pain, would last seconds to minutes and felt like an electric shock I had as many as 15-20 in a day. The pain was excruciating. The reconstructive surgeon initially ignored it, thinking it was from tight sutures, but actually the cancer had apparently "skipped" and entered the intraorbital nerve. They found the tumor with an MRI, but the resection that followed could not remove all the cancer, which had entered the brain. Stage 4 SCC with PNI. What followed was 6 weeks 2 x's per day of the most aggressive possible proton therapy and targeted chemo (cetuximab). It's been 3.5 years now and thankfully, I am still in remission. The radiation saved my life.
Please go forward with the radiation treatment! Yes, you want to live. I have had issues with healing, because I could not wait after they found the PNI. But I healed from the reconstructive surgery (and also from the following surgeries due to the aggressive radiation side effects -- closed tear duct, blocked nostril, skin infections) much better than expected. My left eye is slightly smaller than my right. I don't breathe as easily in my left nostril. But I am alive. If you can wait to have the radiation, get the surgery and follow up with treatment, just like you are planning. Maybe proton therapy will be helpful for you. It is more targeted and less harmful to surrounding tissue.
I wish you well and am sending you strength and courage. You are going forward in the right way and you will heal. My deepest sympathies, a.
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1 ReactionHi @alexashap, what an amazing outcome to what must've been a harrowing experience. And now 3.5 years in remission. I'm sure that @pamwill1960 will appreciate reading your story.
Alexa, what was proton therapy like for you? Were you on chemo simultaneously? How often during the 6 week period?
Hi Colleen, thanks for your reply and support. Yes, proton therapy seemed like a breeze at first, but I was going twice a day with the most aggressive strength allowed and by the end of treatment my face was very badly infected. Terrible really, severe, with the entire left cheek oozing puss and constant nose bleeds. 2 week daily (?) treatment at the wound center cured me and the disruption now seems momentary. This is a risk though.
I received weekly infusions of cetuximab. The targeted therapy (specifically treats SCC?) was unlike other forms of chemo. My hair did not fall out and I was not nauseous. I am very thankful for that. I think I had 8 infusions in all, starting before and ending after the proton therapy.
I have had numerous scc's over the past 10 years +. Two years ago on my left temple, a large one removed by local MOHS dr. Then unnoticed on my forehead hairline a large one grew till I found my dream dr. at Mayo. It took 6 passes but got clear margins. Took 3 months to clear up and followed up with 20 radiation treatments at our local hospital. I lost a bit of hairline but not bad. Next was a fleshy lump over my left ear right under former scc. Local dermo thought it was fatty tumor and didn't biopsy. I stewed over this and then got my Mayo dr. to urge a punch biopsy which showed scc. I saw head and neck surgeon at Mayo and had full surgery to remove with giant incision down that side. It looked awful but in a few weeks settled in and now is fine. I am starting another round of 20 radiation treatments for this area. I'll lose a bit of hair around my ear but so what. The idea is to keep these from getting to my lymph nodes. Just had a pet scan and showed no further invasion so at peace for now...till the next one. I feel I owe my life and sanity to Mayo! If and when I do immunology, I will do it willingly. I'm 75 and very active so really hoping for many more years. I take pics of all these repairs so I remember how bad it was compared to how I look now.
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2 Reactionsdon't hesitate to do the radiation. I've posted my story below.