By Rob Bohning
Rob Bohning is a photographer in northern California and was diagnosed with stage IV medullary thyroid cancer in September 2011. Learn more about Rob on his blog http://robbohningphotography.wordpress.com/
In August 2011 I felt a small, pea-sized bump on my right collarbone. That afternoon, I went for an annual physical exam and mentioned it to my doctor. He immediately referred me to a head and neck surgeon.
That surgeon told me it was a lymph node, but not to worry or come back unless it got twice the size. A month later, it was no larger, but I called back and asked to see another head and neck surgeon for a second opinion. That doctor ordered a neck ultrasound.
Once I came back home, I remember walking in my front door to the phone ringing. It was the surgeon, and his first words to me were, "Don't panic yet." He expressed his concerns of the ultrasound, and explained that healthy lymph nodes are like pearls on a string; what they found in my neck looked like clusters of grapes.
I had fine-needle biopsies of my lymph nodes in the neck, and on Sept. 1, 2011, I got the phone call on the way home from work that it was cancer. At the time my surgeon was not sure what type of cancer it was, but suspected papillary thyroid cancer.
On Sept. 2, my dad passed away. I flew to the East Coast to attend his funeral, flew back home to California and drove straight to the hospital to get biopsies on my thyroid nodules. Days later, they came back positive for cancer, and I was diagnosed with papillary thyroid cancer.
Sharp punch to the stomach
I had an 11-hour neck dissection surgery on Sept. 30. My entire thyroid was removed, as were 50 lymph nodes and my right exterior jugular vein. The recovery from that surgery was brutal, but not as brutal as the news I would receive days later when the pathology came back.
My endocrinologist called and said, "You do not have papillary thyroid cancer." Shocked, I asked what type I had, and the reply was "medullary thyroid cancer." It felt like a sharp punch to the stomach. I had read briefly about the four types of thyroid cancer, and all I could remember about medullary was that it was rare and "incurable."
My wife and I prayed to God for direction on what to do, and where to go. We had health insurance through Kaiser Permanente, but they do not routinely see this cancer and would not refer us to an outside doctor.
Through a pure miracle, we were able to get our insurance changed to Blue Cross Blue Shield, and then the doors opened up to going to a center of excellence. We met some people who had gone to MD Anderson and highly regarded it, so we made our first appointment.
The week before Christmas 2011 was full of CT scans, blood work, MRIs and consulting with doctors.
My personal physician at MD Anderson is Steven Sherman, M.D., professor and chair in the Department of Endocrine Neoplasia and Hormonal Disorders. I have seen him almost every six weeks since December, as my case of medullary is complex. He has monitored my entire case diligently from day one.
The tumors were growing
In Janunary 2012, he had me return to MD Anderson to get a bronchoscopy -- a procedure where a needle is inserted deep into the chest to biopsy the lymph nodes.
The biopsy came back positive and also revealed a RET918 tumor mutation, a more aggressive form of the disease. CT scans also showed a narrowing of some of the bronchial airways going into the lung, as the tumors were growing.
The next month, I returned for a massive chest surgery called a thoracotomy. Almost 50 more lymph nodes were removed, but they could not get clear margins because of the concrete-like nature of the tumors.
I returned to MD Anderson on Easter weekend and had CT scans on Saturday and Easter Sunday. Unfortunately, the scans showed the tumor had grown significantly in just five weeks, which is unusual for medullary thyroid cancer.
When I returned to MD Anderson in May to start chemotherapy, Dr. Sherman asked me if there were any other health changes that he should know about.
I noticed the vision in my right eye had become blurry the week before. An eye doctor in California told me my vision had changed, and I needed reading glasses. Dr. Sherman made an appointment for me to see a doctor that night in ophthalmology.
After that eye appointment, the ophthalmologist told me they found a 7-millimeter metastatic tumor sitting on the macula of my right eye, and that I could go blind in that eye at any time.
Being a landscape and nature photographer and an engineer, the news was devastating. Dr. Sherman worked with a retinal specialist and a radiation oncologist, and recommended radiation for two weeks to save my eye.
The staff was awesome, professional and had me in and out each day in no time. Two weeks after radiation, I finally began chemotherapy.
I have been on chemotherapy now for almost three months. I am still working, playing with my kids, and even ride a bike about 15 miles a day. I am riding in a 25-mile cancer awareness ride, even though I'm a stage IV patient!
I still come to MD Anderson every six weeks for checkups and scans because of the complex nature of my case. It is not easy to live life between CT scans, but this cancer has taught my wife and me to continue to plan life, live as though this moment is our last and to never stop dreaming.
Seek out specialists
I hope my story of metastatic disease, even for a rare and incurable cancer, inspires some to seek out specialists, and to go to a center of excellence like MD Anderson. There is no substitute for knowledge and experience when you have a rare and complex cancer.
I don't know if I would still be here if I had not gone to MD Anderson when I did and received the help I got.
I believe God has led me there and has given me the best doctors and treatment for this disease that I could have in the entire world, and I am grateful for them.
I hope and pray to be the first medullary thyroid cancer patient with complete healing.