Ric B.

Diagnosis: Poorly differentiated follicular carcinoma (thyroid cancer), Hurthle Cell, October, 1995
Treatment: Lobectomy; emergency tracheotomy in October 1995; radiation five different times.

Profession: Public Information Director at Greater Lawrence Family Health Center

I had a large lump on my neck that gradually got bigger. By the time I got to the doctor and went through four months of tests - not at Mass. General - the tumor was 8 by 10 centimeters. I had six and a half hours of surgery. The trauma paralyzed my vocal cords. I'm lucky I have my speech back. In 1982 and 1983, I had back surgery during which I received blood carrying Hepatitis C, which progressed to Chronic Persistent Hepatitis. I'm lucky this type of liver disease has a high survival rate. I went to a medical library and learned everything there was to know about what was then called Non-A, Non-B Hepatitis. Because I was a good student, I made well informed decisions. I felt as though I were a partner with my medical care-givers.

When I had my thyroid surgery, the surgeon said it would be two and a half hours of surgery and the goiter would almost certainly be benign. This time I did little research. I didn't have the Internet then, and I was putting in 50 or more hours a week at work. So when the surgery turned into a six and a half hour ordeal, I really didn't know what hit me. I woke up in the recovery room and I couldn't breathe. I couldn't speak. Those were the worst five minutes of my life. The day before my thyroid surgery, I began to have difficulty breathing. My anxiety was getting higher, which was perfectly reasonable. After all, the next day they were going to cut my throat! With a background in psychology, I knew what was happening so I asked my doctor for two Valiums. Two. Not a prescription, not even a handful, but two. Later, I learned my record said "the patient is hysterical." So when I told them in recovery after my surgery that I couldn't breathe, they thought it was anxiety. I went home four days later and I didn't sleep for the next four days. I then went to the office of the ENT who had consulted in the hospital and said, "I can't breathe." He did some tests, and still thought it was psychological. He had me sleep in the office and when I slept, I was relaxed and just enough air passed through the vocal cords that I got enough air. But when I was awake and struggling, I had two vocal cords that didn't move at all.

A week later, the surgeon took one look at me and said, "You're in trouble." He told his nurse to cancel his afternoon appointments; he put me in a wheelchair, wheeled me across the parking lot himself and did an emergency tracheotomy. When I woke up I could breathe sweet, moist air. Those were among the best five minutes of my life, maybe the best. A week later, I went to Mass. Eye and Ear and they confirmed that both my vocal cords were totally paralyzed. The doctor who'd thought I was hysterical, apologized - too little and much too late. Because it was so hard for me to get information about my cancer, and because it's so rare - 15,000 to 18,000 people a year get thyroid cancer - I organized THYCA: Thyroid Cancer Survivors' Association, Inc., the world's first organization for thyroid cancer survivors. My goal is to put thousands of thyroid cancer survivors on the Internet in a virtual community of support. Now, three years later, we have physicians and survivors communicating through the THYCA mailing list and in an America Online chat room. This is critical because, unlike breast or prostate cancer, we are few in numbers. After my surgery and first round of radiation, I could not find any resources in the management of what is really a chronic disease.

In November 1996, I formed a thyroid cancer support group in Lawrence, MA. Six people came. I found them on the Internet. THYCA Merrimack Valley is still meeting and we now have more than a dozen support groups meeting from Hawaii to New York, from Florida to Michigan. Arturo Rolla, a Boston endocrinologist, and I started a mailing list on the Internet which now has more than 60 postings each day, an extraordinary wealth of information for someone newly diagnosed.

In October 1998, we had our first Thyroid Cancer Survivors Conference, attended by 84 survivors from the U.S. and Canada. I'm just a grocer's kid from Huntington, West Virginia! A few years after my diagnosis, I look at our growing network and the support we have of The National Institutes of Health, which is running one of the support groups, and The American Cancer Society, which has co-sponsored both the 1998 and 1999 conferences, and I have learned that one person can make a difference.

My THYCA is probably related to above-ground nuclear testing in the 1950s and 1960s, but how I got it is less important to me than how I live my life to the fullest for the time I have left. If, at the time of diagnosis, the patient is female and under 40, her survival rate with thyroid cancer is more than 95 percent. But there are other, more aggressive forms of thyroid cancer, and for some, the survival rate is zero. Before my first round of radiation, I got on the Internet where I got wonderful advice. If more information about thyroid cancer had been available to me, I probably wouldn't have had to have all the radiation and I probably wouldn't have had the recurrence I've had. I made so many mistakes. I didn't even have an endocrinologist until three months after my first surgery because by the time I realized how unprepared I had been, I was so beat up from the two surgeries and radiation, I wasn't an effective advocate for myself. Everything that could have gone wrong with my thyroid cancer and treatment did go wrong. It's proving to be a difficult cancer.

Since the summer of 1998, I've been a patient at the National Institutes of Health as well as Mass. General. Finally, I feel confident I'm getting the best care available to anyone. The problem is I haven't had a rest from my cancer since it began in 1995. Unlike many cancers, this is a chronic disease that requires medication and testing for the rest of the survivor's life, even with the best prognosis. With THYCA, once they remove your thyroid, you never feel as well as you did because the thyroid controls every system in your body. And I'm one of those rare cases with some long-term side effects from the radioiodine therapy.

The hardest part for me is that I have a body scan about once a year, or even more frequently, since 1995 and I have to go off my hormones for seven weeks or more to have it. That means I become hypothyroid, which survivors know as hypohell. I lose my memory and my judgment. I never sign documents or make major decisions when I'm hypo. I tell everybody I can't have any major deadline during that time. People I work with are wonderful. They say, "Oh, he's brain dead now." It's like having PMS plus menopause plus Alzheimer's plus GI problems and depression and total fatigue. My body temperature drops from my normal 98.6 to between 97 and 96, so I'm freezing all the time. I go from sleeping my normal six hours a night to 12 or more. I've never been really depressed, though. I started my perennial garden after surgery. It's about faith and hope and working toward the future. But when I'm in week six of hypohell, I sit at my deck, look at the garden and say, "Oh look, weeds; I'll have to pull them some time. Maybe next spring."

My marriage is good because my wife is my best friend. Diane is a psychologist. She understands what I'm going through and I know how hard any cancer is on the care-givers. It affects your life every day for the rest of your life. I dread my next treatment and the uncertainty. But then I think, "It's only cancer. I'm not dead." When you get down to what's really important, I've never had a day so bad I wanted to be in a box in the ground. Just recently, lab tests indicate my cancer is growing and an ultrasound shows what is probably a new tumor. After surgery and four rounds of radiation, that's not good news. Surprisingly, though, I've never worried about the future. I don't fear death, and while I'm able, I'm doing all I can to keep the cancer under control. I have wonderful physicians and am an active partner with them in my care. I have a very "boy" approach to thyroid cancer: Here it is; let's cut it out. If we can't cut it out, then let's irradiate it. If that doesn't work, then let's look for something else. But at some point, you have to stop and weed the garden, accepting what life has given you.