by Pat Sclafani
My name is Pat Sclafani. I was born in 1961, am married and the father of two beautiful daughters.
As I reflect back over the years since 2006, I can say with absolute certainty that it has been an amazing experience. Being diagnosed with a stage 4 Thymoma has been the worst but also best experience of my life. Cancer is not fun but the love and care that I have received have been extraordinary. My journey started in March 2006 as I just was not feeling right. I was always feeling tired and feverish. The fevers started to occur more frequently and were particularly active in the evenings. Finally in May I went to see my doctor. I was thinking that maybe I had Lyme disease or just some annoying virus.
When my doctor listened to my chest I remember the words – "Pat, something sounds a bit strange."
I had a chest x-ray and there was an abnormality, simply described as inflammation. I was told that I needed a CT scan. As soon as I heard those words, I thought CT scan = Cancer. The scan confirmed a
serious level of inflammation and what appeared to be a cyst on my diaphragm. By the end of May, I was very scared and was told that I needed a biopsy as the thought was that I might have lymphoma. If only someone with experience with Thymoma had seen those pictures, my road to a diagnosis would have been much faster. Because of a lack of knowledge, the first biopsy procedure that I had was going after the wrong tissue and the results were negative. I was told that I did not have Lymphoma and must have some type of virus and that it would most likely go away over the next
month or so. I started to feel better and went back to life. In late August of 2006, I went back for a follow up chest CT scan. I expected all to be ok. The scan showed that nothing had changed.
Another biopsy was now required, this time a more invasive procedure via a thorascoscopy. I have always wondered why this did not happen the first time, but I was dealing with doctors who had never seen Thymoma. By now it was mid September. After the procedure, the surgeon who performed the
procedure indicated that I had seminoma – or metastasized testicular cancer. This was a huge shock to me as I showed no symptoms of testicular cancer. After being released from a one night stay at the hospital, I hit the internet. I did my research and was ready to battle just like Lance Armstrong. Then on Sept 19th, 2006 the final pathology tests were in – it was Thymoma. I remember saying – "What the hell is Thymoma?" The doctors I had been seeing had indicated that they did not see this type of
cancer very much and that it was very rare. That was a terrible day. I was 45 years old, had a wife and two young children, and I remember thinking that I was in big trouble. I went home and the info on the internet indicated that my disease was indeed rare, and it was apparent that my disease was most likely pretty advanced. Within a few days, I started my preparation to go to battle. I wanted this stuff out of me and I was going to do whatever I could to accomplish that task.
Living in the northeast provides us with many great facilities to treat cancer. Within a few days of my initial diagnosis, I was able to get appointments at Yale Cancer Center, Mass. General, and Memorial Sloan Kettering. For no particular reason, my first call was to Yale Cancer Center. The phone was answered by Linda David, the case coordinator for the Thoracic Oncology Program. Linda listened for over an hour as I told my story. She coached me and consoled me at the same time. Linda helped me to understand what was going on and did everything she could to make the process easier. There was a lot to learn with respect to managing one’s care and this phone call was my first lesson.
So on the last Friday of September 2006, I entered the Thoracic oncology clinic at the Yale Cancer
Center. It was the first visit of many. That day my wife Lucille and I met many members of the thoracic oncology team. It was overwhelming, but it was very obvious that all members of the team were competent, kind, and compassionate just as Linda had been the week before. My diagnosis was
confirmed, stage 4A Thymoma, and the path for treatment was going to be a long road of chemotherapy, surgery, radiation, and perhaps more chemotherapy. I had a large tumor inside my chest wall that most likely was close to my heart and left lung. The “cyst” of my diaphragm was also malignant and needed to be addressed. Although this news was expected, it still was like someone kicked me right in the stomach. But something else also happened that day. I felt that this team or what I like to call my Yale army was going to be there for my family and me, and there was a potential strategy to combat my condition.
The team discussed a myriad of topics with my wife and me in the first meeting, including how the
team operates; how to tell our 5 and 11 year old daughters their Dad has cancer; nutrition; logistics of transportation to and from Yale for treatment; side effects of treatment; alternative therapies; surgery; long-term follow up, and much more. And if we had any questions after we left that appointment my surgeon and co-director of the Thoracic Oncology Program, Dr. Frank Detterbeck, gave me his business card and wrote down his cell phone number. He told me to call anytime. I never heard of such a thing!
A second opinion at Memorial Sloan Kettering confirmed my diagnosis and possible treatment. We passed on getting a third opinion at Mass. General and decided to be treated at Yale as my wife and I thought there was something special about the Yale Cancer Center. I began chemotherapy treatment on Oct. 20, 2006. It was a long day. I was going to receive three drugs – cyclophosphamide, doxorubicin, cisplatin. I entered the chemo room at 8:30AM and did not leave until 5:00PM. Thankfully there are now drugs to battle the nausea so that was not a major issue for me. I did have to deal with constant “chemo brain” but that I could live with. About two weeks into the process my hair began to fall out and I finally looked the part. I tried to eat all the right things, and I drank water by the gallons. Poland Spring should dedicate a monument to me. Just before my 2nd chemo cycle, I was spending a few moments with my 11 year old daughter. She was getting ready for bed and I was helping her study. Suddenly she asked me if I was going to die from my cancer. I assured her I would not and she replied “Ok, that’s good Dad ’cause I was scared.” When I left her room thatI night my battle with this disease took on a new flavor. Cancer had scared one of my kids - the gloves were now off. How dare cancer scare one of my kids! To scare me is one thing, but my children… I found new strength in my battle. Through the next two months I dealt with two more treatments and the usual
blood work and infections. By December my tumors had been reduced in size by about 50%. By January I was ready for my surgery. It was a seven hour procedure which removed my thymus and tumors in my chest and abdomen. The next several weeks were not easy. It was an invasive surgery. The scars are forever but it gave me a chance. Six weeks after surgery I began radiation therapy -- 30 treatments -- and this was very hard for me.
I was beaten at this point, and the side effects were very tough. I felt sick the entire time and had trouble eating. I had fevers constantly and was always feeling sick to my stomach. I was tired and in pain. By April 2007 it was time for my “chaser chemos”. If anything was left in my body, two cycles were going to hopefully zap it. So by June 2007 I was finished with treatment. I was given a stamp of NED and was told to get back to living.
Through all of this I have had an amazing team of support. My doctors and staff at Yale have been truly incredible. Everyone that assisted in my treatment did a fantastic job. The thoracic oncology team at Yale Cancer Center worked so incredibly well together. They were always informed, and if I had a question or concern, someone always got back to me. Since I had so many things going on, it was important to have all involved communicate and work together. Whether it was the oncology arm directed by Dr. Scott Gettinger, the radiology arm directed by Dr. Lynn Wilson or the surgical arm directed by Dr. Frank Detterback – it all clicked like a well-oiled machine. The Survivorship Clinic directed by Dr. Ken Miller has also been instrumental in helping with my after-treatment care. My family, friends, neighbors, and employer have been fantastic, and without them I would not be where I am today. Cancer has opened a whole new world to me. The dedication I have experienced has empowered me as I have joined the battle to help in any way I can. I do not plan to walk away from my cancer as I plan to fight against it for myself as well as others. Whether it is to help a newly-diagnosed patient, raising awareness, sharing my story, promoting wellness, raising funds for research, I will do anything to further the cause against cancer. Through the help of my employer and my surgeon Dr. Frank Detterbeck, I started a thoracic cancer tissue bank at Smilow Cancer Center at Yale. I have spoken on behalf of survivorship at multiple Yale functions, and I will try to hold the hand of anyone who goes through a battle with this disease. At this point my cancer is not evident, but for me the battle continues. I place a large emphasis on wellness and truly appreciate every minute of everyday. Waiting in line at the supermarket no longer bothers me. I just read the tabloids and laugh. Before I was diagnosed I appreciated every single day. Since my diagnosis, everyday is a gift.
On September 29th 2016 I celebrated 10 years of survivorship since my Thymoma diagnosis. I am so blessed to continue to be in good health with no recurrence of disease. This past November, during my annual checkup at Smilow Cancer Center in New Haven, CT, I celebrated this 10 year milestone with my doctors; Dr. Frank Detterbeck and Dr. Scott Gettinger. Suffice it to say, there were hugs and high-fives all around. I continue to love every single day and have seen my daughters grow up to be amazing young women. I continue to support others who deal with diagnosis and treatment as well as to continue to embrace a life of wellness with sound nutrition, exercise and life balance. For those who are dealing with cancer, please keep after this disease, as amazing things can happen. I have been lucky to be able to support initiatives such as Patient Centered Care at Smilow Cancer Hospital and also to be involved with the CT Challenge which provides support for cancer survivors and their families. I have also supported ITMIG https://www.itmig.org/ which is a great resource for clinical information related to Thymoma.
Surviving cancer is becoming more and more a reality. There are 13 million survivors in the US and our numbers are growing every day. Advances are coming out all the time. We need to focus our energies on pushing those advances further. If anyone who reads this wants a shot of hope, please contact me at www.thymomahope.org I am living proof that there is life after a diagnosis of Stage 4A Thymoma.
Thank you for the opportunity to share my story.