Is it "Good"? You decide...

So here are some stats about the "good" cancer that I have:
  • Of all the thyroid nodules diagnosed, only approximately 5% are cancerous.
  • Clinically detectable thyroid carcinomas make up less than 1% of all human cancers.
  • Thyroid cancer is the 6th most common cancer in women.
  • In 2009 in the US that 5% is projected to be approximately 37,200 [27,200 women, 10,000 men]
  • Of that number, 80% are projected to be papillary carcinomas or about 29,760.
  • Of papillary carcinomas, the particular rare type i have [cystic] is found in 5-6% of the cases so roughly 1,786 people in the US this year.
  • The overal survival rate at 10 years is 80-95%.
  • 5-20% have local or regional recurrences in 5-10years
  • 50-66% of patients with papillary carcinomas have metastasis to the lymph nodes
  • 10-15% have distant metastasis, usually into the lungs and bones

With the odds i've been playing so far, these don't look so "good" to me!

**statistics pulled from the American Cancer Society, New England Journal of Medicine, & National Cancer Institue.**


The "Good" Cancer

Excerpts from the article "The Good Cancer?" on CureToday.com. [As an FYI - as far as I know I have papillary thyroid cancer - but I will be asking for a copy of my path report at my appointment on July 2]

The Good Cancer?

Thyroid cancer's high survival rate masks the sometimes tricky tumor.

The first biopsy on Julia McGuire’s thyroid came back negative, so the college student was regularly monitored for two years until, at one visit, the slight lump had swelled to the size of a walnut. Concerned about its recent surge in growth, her endocrinologist recommended removal, describing the surgery primarily as a precaution, although cancer was a possibility.

The 20-year-old wasn’t particularly worried until her phone rang one day with the biopsy results: stage 1 papillary thyroid cancer, the most common form of the disease.

“I think it was the most traumatic moment of my life,” says McGuire, now age 27. She underwent a second surgery to remove the remainder of her thyroid—a butterfly-shaped gland in the neck that regulates metabolism—and followed up with radioactive iodine to kill any lingering cancer cells. In the past seven years, she has largely moved on, with annual checkups as the only cancer reminder.

The treatment path for Rabbi Len Troupp unfolded much differently. In 1999, Troupp learned he had medullary thyroid cancer, a potentially more aggressive type, comprising fewer than 5 percent of all thyroid malignancies. Since then, Troupp has combated the cancer on several fronts, starting with the removal of his thyroid and lymph nodes in his neck and chest, followed by experimental drugs after the cancer spread to his liver and a lung, among other areas.

The Big Picture

About 37,000 Americans are diagnosed annually with thyroid cancer, a malignancy that can seem relatively benign, at least where cancer is concerned.

Overall, the five-year relative survival rate for thyroid cancer is 96.9 percent or better, as long as the malignancy is diagnosed while still confined to the thyroid or nearby lymph nodes, according to the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) data.

About 90 percent of people develop either the papillary or follicular types, frequently considered treatable with surgery and radioactive iodine. Even if the malignancy can’t be knocked out completely by treatment, the cancer can often be controlled for years, in part because it can be slow-growing. But cancer survivors and treating physicians frequently wince at thyroid malignancies being described as the “good” cancer because it can throw curveballs.

The two less common types—medullary and anaplastic—can be far more aggressive and rarely respond to radioactive iodine therapy. Seemingly treatable types, such as papillary, can become less responsive over time to repeated radioactive iodine treatments. And regular checkups are crucial as recurrences can appear sometimes decades later, physicians say. In all, nearly 1,600 people die each year of thyroid cancer, according to NCI data.

Although McGuire’s tumor measured about an inch, the cancer hadn’t spread to the nearby lymph nodes. She worked treatment around her college schedule, completing surgery before her junior year and then returning home for radioactive iodine treatment over holiday break.

In retrospect, the stressful ordeal served as a wakeup call, McGuire says. She now works as an IT consultant and has assisted several cancer-related groups, including the Thyroid Cancer Survivors’ Association. “I went back to school and I did better in school. I just took things more seriously.”

How much of the thyroid is removed and whether radioactive iodine is recommended depends upon a number of factors, including the tumor’s size and the extent to which it has spread beyond the thyroid itself.

Age also can play a significant role. Younger men and women—those diagnosed before age 45—are more likely to respond better to radioactive iodine treatment than older patients, says Stephanie Lee, MD, PhD, associate chief of endocrinology, diabetes, and nutrition at Boston Medical Center. The cancer is considered stage 1 in that age group, as long as it hasn’t spread to distant organs, such as the lung.

For follicular and papillary malignancies, radioactive iodine therapy can serve as a magic bullet. That’s because the thyroid naturally pulls iodine into the gland to produce hormones needed to regulate the body’s metabolism. Thus, the radioactive iodine, an isotope usually given in liquid or pill form, is easily absorbed into the thyroid, killing cancerous cells. Patients are typically kept isolated for 24 hours and should avoid prolonged exposure to children and pregnant women for a week or two after treatment.

Once the individual’s thyroid has been removed, levothyroxine (Synthroid, Levoxyl) is prescribed to replace the body’s natural thyroid hormone. (Patients must temporarily stop thyroid hormone pills prior to radioactive iodine treatment.) The dose of the synthetic hormone may need to be adjusted based on any symptoms that develop. Too much thyroid hormone can cause a rapid heart beat and weight loss. If the levels drop too low, the result can be sluggishness, weight gain, and dry skin.


The Bob Saga Continues...

If you have been reading my notes you know that I had a Hemithryoidectomy a little less than 3 weeks ago to remove a nodule [nicknamed Bob].

My doctor was nearly certain - in fact said he would be "very surprised"- if my full pathology came back as anything but benign.

We were both a little shocked when I went in to have my stitches out a week ago Friday and found that "Bob" had been sent to the Mayo Clinic for a second look. He said he would call me as soon as the reports from Mayo came back...

So that is basically how exactly 2 months after my 30th birthday, I got the phone call telling me I have cancer.

So what does this all mean...Well there are some things that can be considered "good news"...

  • First, thyroid cancer is highly curable especially in someone less than 45yrs old [5year survival rates in the 95-100% range].
  • Second, my surgeon thinks that they removed all of the tumor when he did my surgery a few weeks ago so at this point I don't anticipate going under the knife again soon.
  • Third, I have the best physicians, family, friends, co-workers... it is impossible not to be optimistic.

Is the worry and concern gone - definitely not. Are there questions left to be answered - the list keeps growing daily. Do i need an oncologist? An endocrinologist? I want to "know my enemy" in a way. I have started gathering information so I can be an "informed consumer" when I see my surgeon again on July 2 and can ask the right questions. After hearing that "Bob" was "almost certainly benign" and then finding out otherwise, I want to be certain that the cancer hasn't spread even if i'm told it is unlikely. I want to know the tests that can be done, to know the therapies that can be used and I want to discuss them all. And with years of fundraising and activism under my belt for breast cancer - I want to find out if there is a way I can do the same for thyroid cancer.

There is still a lot of uncertainty in the air and even though my prognosis is good, it is never easy to hear the words "we found cancer."

I'm thankful for excellent physicians, for one of the top medical centers in the country just miles away, for insurance that covers the ever increasing medical expenses, for a workplace that cares about people not just productivity, for family and friends who love me and I can count on to be with me every step, and for my faith...without which there would be no hope.

Lord I feel...

Confused yet... You are my counselor (Isa 9:6)

Fearful yet... God says: "Cast all your cares on ME" (I Peter 5:7)

Lonely yet...You promised never to leave me nor forsake me (Heb 13:5)

Sick yet...You are the Lord who heals all my diseases (Ps 103:3)

Troubled yet....You are my peace (Jn 14:27).