Patrick (Pat) Shannon
Rapid City, South Dakota
Rare Cancer Type
Adenoid Cystic Carcinoma (ACC)
4 major surgeries, 2 rounds of radiation (40 treatments)
Mayo Clinic, Rochester Minnesota
Out of Pocket Costs so far
$160,000+ since 2007
About his Current Disease
As of November 1st 2018, Pat’s cancer is currently located in both lungs, liver, lymph nodes under left arm and in the head and neck area. There is no known cure for Adenoid Cystic Carcinoma. Treatment options are very limited and traditional Chemotherapy is usually not an option for ACC. This type of cancer is highly unpredictable and can have months and even years of little or no growth but can then be very aggressive and go through growth spurts and become relentless with patients eventually succumbing to the disease. There are only 1200 to 1400 new cases of ACC in the U.S. per year.
The Longer Story
Pat’s Cancer (The Longer Story)
Back in February of 2005 I noticed a small lump on the left side of my neck under my jaw. It was small, maybe about the size of a dime. It did not hurt, I had no symptoms other than it hung around for a couple weeks. I decided to see my doctor and he had a look and suggested I see an Ear, Nose and Throat specialist who could determine what it was. He referred me to the ENT and right away he scheduled a CT Scan but told me that he thought this was a plugged salivary gland. We waited for several days for the results to come back and finally we had to call the ENT back ourselves to hear the results. He told us over the phone is was in fact a plugged salivary gland and usually these things clear up over time and it would help if I sucked on lemon drops or anything sour to help the process. Naturally I was somewhat relieved. After all, if the treatment is to suck on sour candy how bad could it be, right? Many months went by and the little lump stayed with me. It did not bother me and I was in no pain. Life was good. However, in the fall of 2006 I noticed that the little lump grew a bit and by Christmas it was really getting big (about the size of an extra large egg). I went to a different doctor who did another CT Scan and told me he had no idea what it was but it had to be removed. He referred me to the Mayo Clinic in Rochester Minnesota, where I met an ENT who specializes in surgery of the head and neck. His name was Dr. Kerry Olsen. From the minute we met him we felt so comfortable. He was very engaging, not in a hurry and took the time to explain in detail what he thought. He told us right up front he suspected cancer. He scheduled me for surgery the following week. Dr. Olsen went into great detail about the surgery which he said would initially cut me from the bottom of my ear nearly to my chin and perhaps more depending on what he found inside. I remember asking him just to confirm…..”you’ve done some of these I assume”? He patted me on the knee, smiled and looked me in the eye and said, “I’ve done thousands of these”. I felt so comfortable. (more on Dr. Olsen later)
On February 13th 2007 I had my surgery. When I woke up I had a huge neck brace on and I was taken to a hospital room for the night. The next day Dr. Olsen and his young intern came to see me. They removed the neck brace (oh what a relief). He told me the news. He had to cut me from ear to ear. The cancer had infected not only lymph nodes but also had invaded the lingual nerve. It’s the main nerve to your tongue. That explained the numb tongue for sure. The surgery also left me somewhat paralyzed on one side of my face. He said he would have a radiation specialist come and see me and as a follow up to surgery he recommended radiation to make sure cancer would not come back to that area. After a few days in the hospital I headed back home. The radiation specialist at Mayo said that I could do my radiation treatments back home and a plan was sent from Mayo to the Cancer Center in Rapid City. I went through 6 weeks of radiation. All was good again despite having a huge scar left over from the surgery. Initially I was going back to Mayo for followup scans and checkups every 6 months and in 2011 was changed to yearly checkups. I remember those appointments well and Dr. Olsen saying to me to make sure I have regular chest x rays because sometimes this cancer can spread to the lungs. He also had a way of examining my head and neck that to me was unusual. He always closed his eyes, spoke quietly and felt every muscle, every square inch of my neck with his hands as if he were a blind man reading braille. It felt so comforting knowing he was the absolute best at what he did and I was lucky enough to have him treat me.
In the July of 2013, I noticed another small lump on my neck. This time lower and on the right side. I had already scheduled my Mayo annual appointment for early September so I of course pointed this other small lump to Dr. Olsen and his new student doctor. They did a CT Scan and a biopsy of lump and I headed home. The next day the student doctor called me back with the news of the biopsy. He said it was confirmed Adenoid Cystic Carcinoma. I had to ask him again over the phone…..”what did you call it”? He said it again…..Adenoid Cystic Carcinoma. They had probably told me before but I had been going to Mayo Clinic for over 6 years and I never once payed attention to what kind of cancer I had. After all, cancer is cancer right? Of course I started to “google” what the hell I had.
They scheduled me for another surgery right away. I had no worries, my ENT was the BEST! They did want me to come in a day early and have a PET Scan to make sure the cancer was not present anywhere else. My appointment with Dr. Olsen was late in the afternoon the day before my surgery. He was busy that day and I waited a bit longer than usual but no worries. I first saw the student Dr. that had called me 2 weeks earlier. He had to get all the consent stuff signed and so on. Then he said, “let me check to see if the results of your PET Scan are back”. He came back in the room looking white as a ghost. You could tell this was not going to be good news and he also brought a nurse with him. They always do that when they deliver bad news. They want to make sure someone is there to witness you freak out. Dr. Olsen was still busy but the student doc delivered the news. He said, “Mr Shannon, the PET Scan shows that you have a spot in your lungs, another on your spine and another in your shoulder as well as what we were dealing with in the neck. This changed the plan drastically. Dr Olsen came in a couple minutes later. He said it would be better to postpone the surgery since the disease is now spreading and you need to see a medical oncologist to help manage the disease going forward. He said he would have Medical Oncology set an appointment and check in the next day to get in. WOW. Chris and I left his office. It was after 5 by the time we left. There was nobody left in the clinic when we left. It was eerily quiet as there was nobody around. I was freaked out to say the least. I told Chris I needed a drink and quick. We went to a place called Newts which is a hamburger joint in Rochester that we often go to. We had some drinks, talked and tried to take it all in. Wow, just wow!
The next day after some wrangling in the morning to get an appointment we did get in to see Dr. Katharine Price, a medical oncologist for head and neck cancer. She too was very comforting. She went into more detail about what Adenoid Cystic Carcinoma was and how there is no proven cure for it and how rare and unique it was. We asked about chemotherapy and she explained that there was less than a 15% chance that chemo would work on this type of cancer. By the time we left we felt pretty good. The best course of action for what I had was to do whats called “watchful waiting”. This means lots of scans moving forward and doctor visits to go to. I went back to Mayo every 4 to 6 months for scans. Tumors were growing pretty slow as ACC can have a tendency to do, but I was bothered with the lump in my neck so I did have at least that one removed so I did not have to feel it everyday in the shower. In October of 2014 I had that surgery done.
Fast Forward a bit to the fall of 2015, one of Dr. Prices team mates Dr. Ashish Chintakuntlawar (if you can pronounce it, you win a prize) tell me that the lung tumor has been picking up steam and I would likely have to have surgery in the spring. In February of 2016 I met with him again and also a thoracic surgeon named Dr. Wigle. A lung surgery was scheduled for March 15th. By this time I also had a new tumor under my left arm which Dr. Wigle also took care of with surgery. The lung surgery was difficult to say the least and to this day I have a lot of nerve pain associated with it. I had taken a few weeks off work to let everything heal up but I was still on some heavy duty pain medication and after a few short weeks back to work I realized it was just to difficult to keep working a high stress job as a sales manager on pain meds while trying to heal from surgery and manage cancer in other areas at the same time. I decided it was time to stop working and after using up my allotted short term disability I transitioned to long term disability and retired in October of 2016. Sure, the pay and benefits were different but we embraced what we needed to do and sold our big house and moved to a small one and did some other things to make it all manageable. It felt good to be done working and with the stress off from work I could focus more on ME.
About a year after the surgery under my left arm I noticed another lump in almost the exact same area. I was continuing to get scans and yes it was confirmed the cancer was coming back not only in that area but in my neck and lungs again too. In the spring of 2018 I again had radiation for the areas of the neck but also under my left arm. I again chose to do this in Rapid City and it really seemed to work. The tumors shrunk, I lost about 35 pounds but was feeling great. On November 1st of 2018 I had a followup appointment at Mayo with Dr. Price. The usual scans, blood work and so on. The news was not the best. More lung tumors, one of which was growing a little more rapidly than others which they had been watching for a year and other new spots as well. 2 spots on the liver were noted and the area under my arm and in my neck seemed to be growing slowly again. Crap! Every time we seemed to make headway this garbage comes roaring on again. Every diagnoses seems to hit me different. Your mind races into places it should not go but then you realize these are the cards your dealt you need to just play the hand.
This time Dr. Price suggested we do a lung biopsy and send my tumor profile in for genetic testing to see if there might be a trial I could get into for treatment. On December 13th 2018 I had the lung biopsy done. I visited with Dr. Price and of course she asked me how I was doing with all this. I told her I was so distraught after the news last month that I was going to buy a motorcycle and hit the road in the spring to see the states I had not been to and maybe do something to raise awareness about rare cancer. She looked at me and smiled and said “well isn’t that what his is all about”? You see, Cancer is about LIFE! NOT DEATH! Just because you have cancer, you don’t have to let it have you.
I also saw another radiation specialist at may to see if there was anything additional we could do as well as meeting with Dr. Wigle again about another lung surgery. Everything is on the table but for right now the risk outweighs the reward. We’re gonna wait to see if the trial comes through then decide. Meanwhile I’m planning, I’m living and I’m Ridin On.
Yes, “I’ll probably die from cancer, but it ain’t gonna kill me.”