The Mohs procedure is a micrographic surgical procedure for removing cancerous tissue. Basically, the Mohs surgeon removes tissue and looks at it under a microscope on the spot to see if there are cancer cells. He keeps removing tissue until he verifies that he has removed all cancerous tissue. He does this all round the site of the initial tumor site. Dermatofibrosarcoma protuberans (DFSP) tumors put out little 'fingers' of cancer cells radially around the original nodule. If you miss removing one of these 'fingers', the cancer grows back. DFSP always starts in the skin but, as a sarcoma, it can infiltrate any soft tissue. This thing was growing my neck, not terribly far from my thyroid, voice box, and the plethora of other things.
Dr. D scheduled my Mohs procedure for January 25th, giving me 11 days to study and dwell on the cancer growing in my neck. In that time, I went to see the leading sarcoma expert at University Hospital in Iowa City, Dr. M.
Dr. M specializes in rare sarcomas, like DFSP. After reviewing my CAT scan and pathology report, he signed me up into one of his research studies and talked with me about my prognosis. I must say that he is pretty awesome and I was, and still am, pretty happy that he is on my 'team'. The long and short of that conversation was that Mohs surgery was the way to go and that my recovery and survival odds were very, very good, in the neighborhood of 99%. This jived with what I had discovered in my own research and I began breathing easier. Dr. M did say that if the DFSP reoccurs that I needed to come see him immediately because, having had one surgery on the area already, treatment would be more difficult a second time around.
Dr. D set me up with Dr. W for the Mohs procedure. Dr. W is a dermatologist and a certified/accredited Mohs surgeon. The Mohs is used a lot for treatment of basil cell skin cancers so it is dermatologists who generally do this kind of thing. I could tell that Dr. D was a little concerned as to how deep this thing might have infiltrated and whether or not a dermatologist would be the right doc to go deep into the neck if necessary. He scheduled me to come back to see him the same day of and immediately following the Mohs procedure so that he could take care of any reconstruction of my neck, neck muscles and, if need be, underlying tissues. He wanted to make sure that not only was it done right but that it could be done so that it left a minimal of scarring. The tough part in planning was that it was an unknown how much of neck tissues would have to be removed and how deep it would go. Timing was also an unknown. The Mohs might take an hour or it might 4 hours, it just depends on how many iterations of tissue removal are necessary.
Hubby took the day off to play chauffeur and my MIL took the kids for the day. We arrived at Dr. W's office right as they opened and he got started on the Mohs procedure pretty immediately. This was done in his office under a local anaesthesia. I must tell you that I was pretty nervous about this going in. It is also a very weird experience to be talking to someone who is cutting a hole in you neck.
"So, doc, how many of these Mohs procedures have you done?"
Dr. W, paused and thought a moment. "Well, in the last 2 years, I've done about 2,000 of these. It's the primary treatment for skin cancers on the face and nose."
"How many cases of DFSP have you worked on?"
He answered with hesitation, "Nine, but this is the first time I've seen it on the neck. The other's were all on the torso except one, which was on an arm. They were all much bigger too. This one is pretty small, which is good." He paused, then asked, "You be sure and tell me if this local wears off while we are working, OK?"
"No, worries there, doc. You'll be the first to know."
I closed my eyes and thought about my kids and my husband, trying very hard not to focus on the tugging and pressure at my neck or the comments of the doc to the nurse. This first stage of the procedure took about 20 minutes.
"OK," said Dr. W. "We're going to put some temporary stitches in this to close it up while I process the tissue samples to make sure we've got all of it. The nurse will put a dressing on it and you can sit with you husband. This is going to take about and hour."
So I was back in the waiting room, afraid to move my neck much for fear of the temporary stitches pulling or the dressing coming off. Hubby was pretty entertaining. I could tell he was concerned but underneath that was a fascination with what my neck looked like under the dressing and how the procedure worked.
It took longer for Dr. W. to process the first set of samples about 2.5 hours all together, by then the local was wearing off.
"Well we've got clear margins in all around except underneath on one side. It's going into the neck muscle deeper there and we need to go back in and remove more tissue." The second stage was about 15 minutes. The local kept wearing off and he had to re-dose me about 3 times. About 5 minutes in, I heard him say, "Oops," and then to the nurse he said, "Could you go get the machine over there?" That's a real attention grabber!
"Something wrong, doc? Cut your finger?" I asked with more bravado than I felt.
He chuckled, "No, I just nicked a capillary and there's a bit of blood. Nothing to worry about."
'The machine over there' was a cauterizing tool and it is very unsettling to smell yourself scorching. This time he left the wound open and just put a dressing on it. I got to stay in the procedure room while he processed this second round of tissue samples and the nurse went and got Hubby to sit with me. After about 30 minutes, Dr. W came back in and said, "We got it all. Clear margins all around and deep. You are seeing Dr. D today?"
Hubby answered, "Yep, he said he wanted to do the final repairs and closure to repair things and make it pretty."
Dr. W nodded, "So I'll just put some temporary stitches back in and we'll put another dressing on it to hold things in place for your ride over there."
Hubby tucked me in the car and we headed to Dr. D's office. He called my mom as we drove and let her know how things were going thus far. I heard the relief in her voice over the speaker phone in the car and it brought tears to my eyes. I could tell that the oncology nurse in her had been dwelling on worst-case scenarios.
I leaned the seat back and closed my eyes as Hubby made a second call to update his mom and check on the kids. We were at Dr. W's a total of 4 hours. My neck hurt and I was ready to be done.