#128 Cancer with the experts

At Thanksgiving our daughter wore an open neck sweater with a small necklace, and our son mentioned that he could hardly see her scar.

In late October 1997 she had blood tests, an ultrasound, and a radioactive iodine scan of her neck to determine whether she was having thyroid problems. In addition to weight gain, she was having muscle cramps, kidney pain, extreme fatigue, etc. The doctor found a large goiter on the left side (hot) and a small nodule (cold) on the right of her neck. The cold ones are possible cancer sites.

She was diagnosed at that time with Hashimoto's Disease, an autoimmune condition that runs in families and causes hypothyroidism. Relatively rare in women her age (30), it is quite common in women over 50. The goiter was not visible nor were any of her thyroid tests abnormal. So these things are hard to detect.

She was to return to the endocrinologist for another check in 3 months. She did that, he performed several biopsies on the tumor tissue which were benign, but he was very concerned by how fast the goiter was growing and said it would need to come out because it was compressing her trachea (windpipe). She was developing hoarseness, breathing problems and some chest pain. Within the week she had met with the surgeon and had another scan, at which time it was discovered the large tumor had grown down into the sternum and the small one had also grown. She was scheduled for surgery in 3 days, which didn't give us much time to think about it.

By this time there were many players in the game: Dr. Olsen (her physician and employer who first suggested she needed the tests because her personality was changing); Dr. Blackman (endocrinologist specializing in thyroid); Dr. Shirck (surgeon); Dr. Blackwell (surgeon); and Dr. Anderson (oncologist).

On Monday, February 16, 1998, at 6 a.m. our pastor, our son-in-law’s brother and wife, and my husband and I met with our daughter and husband at the Hospital for prayer before she went into surgery. Her husband’s parents arrived later from Cleveland. Shirck did the surgery with Blackwell on call in case her chest needed to be opened. The surgery lasted 4.5 hours. She was in her hospital room by 2 p.m. A total thyroidectomy was done with no damage to her vocal chords and the parathyroid glands, which are very tiny and easily damaged, were in tact. Usually, they try to do a partial thyroidectomy because of the risks to those other two areas.

Papillary thyroid cancer was found, but not in either of the two nodules they knew about. It develops in cells that produce thyroid hormones containing iodine, and grows very slowly. This was encapsulated and completely removed along with 17 lymph glands. Pathology by Dr. Anderson revealed no spread of the cancer and nothing in the lymph glands.

She was declared cured, released from the hospital on Friday, and returned to work on March 2. Her husband took a week off and we helped out the second week. But then the "fun" began about what to do for follow-up. The clutch of doctors expanded. Her sister-in-law is a nurse, so her records were faxed to her and she knew an oncologist and an endocrinologist to consult. Her brother-in-law had a friend, an oncologist. Our daughter had more appointments with Dr. Blackman and Dr. Anderson, and of course, she saw Dr. Olsen daily at work.

The problem was whether to do an Iodine 131 scan with a follow up of radiation to kill any thyroid tissue found by the scan. Even with complete removal of the thyroid gland, there is still thyroid tissue in the body. The surgeon and oncologist (Shirck and Anderson) wanted her to do that to eliminate any return of the cancer. Her own doctor (Olsen) and the endocrinologist (Blackman) said the risk was so small, it was not worth the possible danger to the exposure of more radiation. She had already had 2 scans within 4 months. These scans apparently can cause cancer of the salivary glands and kidney (the kidneys have to clear all this radioactive material from the body and Hashimoto's Disease is hard on the kidneys) if there is over exposure. They can also interfere with future pregnancies because of the time needed to eliminate it from your body.

Dr. Olsen thought removing 17 lymph glands from her neck was overkill and because she had so many strep infections, he thought she needed them (although she hasn’t had a strep infection since removing the thyroid). The doctors also didn’t agree on when to do the follow up if she decided to have the scan. The endocrinologist said she must wait if she had it done; the oncologist wanted it within 30 days of the surgery.

It appeared to me we had the "slash and burn" guys up against "whole body" guys. Blackman (endocrinologist) had never had a patient who refused the scan/radiation who had further trouble. Anderson (oncologist) had never had a patient who refused it. Blackman said only 5% of papillary cancer patients have a reoccurrence, and only 1 out of 150 of those die because there are ways to spot it and treat it if it returns.

Her own doctor, who is not a specialist, but who hadn't been wrong about anything to that point, didn’t want her to have the further treatment. The other doctor in the practice who was out of the country, thought she should have it. The contacts of her sister-in-law said no; the contact of her brother-in-law said no. They were all so young and confident, those specialists, and I went to all those appointments with my daughter, and listened to them earnestly explain all this to her. She had an incredible knowledge about medical things and seemed to understand it all. (I didn’t.)

Even so, they all told her it was her choice! And she decided. No further treatment.

It’s been five years, moving close to six. She is cancer free, but still struggling daily with the right mix of medication to compensate for no thyroid. And we can hardly see that awful huge scar. But we remember--most assuredly we do.