Betty's Story: thyroid cancer

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Betty: spreading thyroid cancer awareness

My name is Betty. I'm 49 years old, on the verge of 50, and I live just outside of Boston, Massachusetts. I'm married, I don't have any children, but I have two wonderful cats. In mid-November of 1996 I had an appointment with my new primary care physician at a major hospital in Boston, just for my annual checkup, and this doctor was feeling around my lower neck and she kind of sat back and looked, felt some more, then she gave me a cup of water and asked me to sip it and she watched as I swallowed, really intently and she felt my neck again and said, "Uh-huh. I think you have a thyroid nodule. Don't worry, they're usually nothing. I had one and it went away by itself, but still, I want you to go and get an ultrasound, and they might want to do a needle biopsy." So, I made the appointment, and a couple of weeks later, I did go for my ultrasound. And sure enough, they found the nodule. There was only one. They did decide to do a needle biopsy. It's called a "fine-needle aspiration". They took four samples, each one from a slightly different angle or going in a little bit deeper than previously. I didn't feel any pain, there was a little bit of pressure, but it wasn't bad. I did have a good bruise on my neck afterwards, though, so I told people I'd had a date with the vampire Lestat.

Anyhow, a week later I got a call from the endrocrinologist who supervised the needle biopsy. The word was that the results were inconclusive, and that I should have the affected lobe of thyroid gland removed. He then referred me to a surgeon at the same hospital. It was shortly before Christmas that I met with the surgeon, and he explained very carefully the procedure of having a thyroid lobectomy to me, explained the risks, you know, all that sort of stuff. He indicated that there would be a one in four chance that the lump might be malignant and in that case I should then return to have the other lobe removed. But we'd find out soon enough after, and thyroid cancer, if it were cancerous, is a slow grower, and so not to worry too much.

Well, I tried to be calm about all this, but the idea of going under general anesthesia and giving up control of my body to people I didn't know, was really scary. You know, and they were going to cut my neck! Well, fortunately my husband was there to kind of try and keep me balanced about all of this. It was a frightening experience. On the other hand, I knew that surgeon who was going to perform my lobectomy was very experienced in the type of surgery, and he was very respected, not only by his physician peers, but also by the nurses and other staff in the hospital, so at least I felt that I was in good hands.

Going through the surgery

The surgery happened in mid-January 1997, on a Tuesday. It was a day surgery, and they operated on me at about 10:30 in the morning. It was nice in that my husband was allowed to stay with me until they actually wheeled me into the operating room. The surgery only lasted about 90 minutes which was nice. It was short, relatively, compared to what I've heard. They used sodium penthothal, which made me a little bit nauseous, but it passed quickly. I don't remember exactly when they moved me to the day surgery recovery area. But slowly and surely I started waking up and they gave me fluids and had me eat some soft foods, I think chocolate pudding or vanilla pudding or something like that. But anyhow, I was finally released at about 7:30 p.m. and I was really slow to come out of the sodium pentothal. And I went home and crawled into bed. But by the next day I was feeling pretty decent and I had an amazing amount of energy that week. Then that Saturday, five days after my surgery, I got a telephone call from the surgeon and he said, "Well, I have good news and bad news." And of course, the bad news was that I had papillary thyroid cancer, but the good news it was Stage I, the malignant area was small, and that I had a very good prognosis, essentially like 95% survival over 25 years. He explained again that the thyroid cancer is very slow-growing and very easy to treat, in most cases. He then said I should have the other lobe removed, and I could do it either the next week, or I could wait three to six months. I decided, "Let's do this right away." So, the next Tuesday, I went in for the surgery.

But in the meantime, in between, there's only a few days wait before my next surgery, but here I was, previous to this, I was the picture of health. I had been a long distance runner, competitive body builder for many years, I hardly ever got a cold. And here I was with cancer. It was really strange. Very strange. And everybody who knew me was really surprised, needless to say. In any event, the next Tuesday I went in again for a second surgery. This stay was to be an overnight stay. Occasionally, people who have a full thyroidectomy have to sustain a little damage to their parathyroids, which are located kind of behind the thyroid gland, and they regulate the calcium levels in your body. And if they go out of whack, you can get mighty sick from it. But this surgery seemed to go quite a bit easier. I was only under for an hour, they used a different anesthesia, and gave me anti-nausea meds. Essentially, I talked to the woman who was in the bed next to me all night, after that surgery, and the next morning when my surgeon popped in at eight o'clock, I kind of jumped up and said, "Hey, howya doin'?" And he looked at me with total amazement. "You're not supposed to be so energetic. You just had surgery 5:30 last night." And then, just after noon, I was released, I got my prescription for synthroid, which I take every day, and I spent time doing my recovery. I only missed about eight days of work, total, for the two surgeries, returned to a light exercise program of exercycle in just a couple of weeks, and went back to my weight lifting program about six weeks after the second surgery.

Access to information

In the meantime, during this recovery period, fortunately I had access to the internet, and I used that access to do a lot of research on thyroid cancer. When I met with my endocrinologist about four or six weeks after the surgery, she commented in fact, that I was one of the most informed consumer-patients she'd ever known. We discussed next steps, including radioactive iodine treatment, which is one of the probably most common post surgical treatment for papillary thyroid cancer. Because well, I was in sort of a gray area as far as whether or not I should or could have this treatment, and it was really up to me. But she was comfortable following me with twice yearly blood tests and an annual ultrasound to the neck. I did go for a second opinion, which confirmed her feeling, and I decided not to have the radiation treatment.

But also during that period post surgery, I discovered a wonderful e-mail discussion support group for thyroid cancer survivors, and I subscribed to it. And an endocrinologist with lots of thyroid cancer knowledge was involved. This was a true blessing. The group hadn't been around for very long, I think for just a few months, but there were already a lot of people posting messages to it. And through that group I also found a live support group, that was based only forty minutes from my home. But this e-mail discussion group really turned into something else. In June of 1997, a bunch of us got together, people from all over the country, as a matter of fact, and we decided, "Let's have a conference." Thyroid cancer has sort of been an ignored cancer, because doctors say, oh, it's easy to treat, don't worry about it. But we wanted people to know and have more information. So in June we came together and planned a conference for the next September, which we by a miracle, pulled off. And it was wonderful. We had about seventy people there. And doctors helping with presentations, and it was wonderful and we decided we wanted to become a real organization, and we formed TICA Thyroid Cancer Survivors Association. It's a not for profit completely volunteer organization. I'm on the Board of directors, I'm the founding director. I'm also the webmaster for the organization. By the way, the URL is www.THYCA.org. We just in fact held our third annual conference Sept. 8 through 10 of this year in Chevy Chase, Maryland, and we had over two hundred people at this conference.

Advice for other survivors and patients

I guess I've been fortunate, all in all. I was an early stage discovery, all of my tests have been clean since my surgeries, I've had no recurrences, no remaining cancer. I am absolutely religious about making sure that I see that endocrinologist twice a year and also I never forget my synthroid tablet, absolutely essential. The whole situation, it was scary, but on the other hand, I learned a lot in the process. First of all, obviously, I learned a lot about thyroid cancers. I also learned that a diagnosis of cancer is not a death sentence at all, by any means. And my work with the Thyroid Cancer Survivors Association is my way of saying "thank you for letting me off easy, Universe" and I enjoy helping to educate other people and letting them know that they are not alone. Many thyroid cancer survivors had never met another one, didn't even know very much about this at all, and here I am being able to give to the community. And it's also given me an opportunity to meet some of the most wonderful people. I never would have had an opportunity to meet before. I guess for the newly diagnosed my suggestions are: Ask questions. Educate yourself. Educating yourself will be your best friend. Get second opinions. Get third opinions. And do research. Use our survivors association. It's not horrible. Get through it. I've done it, and I know many, many, many people who have. So, and if you have any questions, come to our web-site, THYCA.org. Thanks for hearing my story.