6.26.2009

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.**

6.19.2009

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?
BY CHARLOTTE HUFF

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.

6.12.2009

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).

5.30.2009

Post Surgery Update (may be TMI for some people)

So surgery was Tuesday morning at 7:30am..had to be at the hospital at the lovely hour of 5:30am... But they have valet (no i didn't drive) and I didn't have to do my hair or pick out an outfit so it really wasn't all that bad. Plus I got to go back to sleep! ;o)

Anywho, I apaprently shared too much during my pre-encounter call (nurse calls, gets your history and current stats before surgery) because everyone (nurses, doctors, interns) thought that it was hilarous that my nodule/mass thingy had the lovely nickname of "Bob." A bit of a backstory there...my lovely brother-in-law said i had a baby in my neck and my lovely sister decided to name it Bob... well i told the pre-encounter nurse that i was looking forward to "Bob" coming out! Hey, she caught me on my last day of work (Friday no less) and in the middle of an intensive audit prep/clinical documentation training session! It was a moment of slap-happy weakness.

So back to the details... I was prepped for surgery which included getting into my new, cool hospital style dress/shirt and an IV in my hand and talked with my surgeon, anesthesiologist, senior resident and the med student assigned to my case. Just after 7:30am i was rolled into the surgical suite, had a mask put on my face and some "calming meds" put into my IV and thats the last I remember until about 11:30am.

I woke up in the recovery room freezing to death (I was shaking) with a nurse that wanted me to tell her the number of my pain...yeah my throat felt like it was on fire except for the ice pack on my neck and I just wanted to go back to sleep! I got some morphine shots and warm blankets and then I remember my mom coming in to help wake me up. Then i was wheeled past my dad and A.Pam and maybe another person or two (?) and into my lovely private room overlooking the new children's hospital and downtown GR (I had 2 windows- Thanks A.Pat!). The next few hours are a bit blurry - I had several visitors including mom, dad, A.Pam, Pastor Rick, Gpa, A.Pat, Mayme, KT, Brian, doctors, interns, nurses, techs... At this point they were giving me dilaudid and ice packs so I was just out for the count. I had a few ice chips, and by the time evening rolled around I was upgraded to Jello and chicken broth. I was also unhooking myself of the leg circulation machine and BP machine to get up to the restroom so I could rid myself of the betadine beard I had aquired.

I had also learned that once they got in there to look around, they found my nodule/mass thingy had ruptured at some point which made it stick to other essential items in the neck. (fantastic) They had to scrape it from the other structures including my laryngeal nerve (the one that controls the voice) so basically things were very inflamed and angry in there. Good news is that the frozen section biopsy looked good and they only ended up doing a partial thyroidectomy.

The next morning I was visited by the med student at 5am - she asked me a lot of really dumb questions for that time in the morning. Then the resident visited at about 6:30am to rip off the bandage over my incision and she wrote orders that I could try real food (YAY!). I was promptly given a menu that I could order my "room service" from LOL - totally not lying on that one! I ordered a fruit and yogurt parfait which was very yummy and was working on some apple juice and cream of wheat when my surgeon came in and wrote the order that I could go home! (another YAY!) So i said goodbye to my absolutely fabulous nurses and was wheeled to the parking structure while my mom got the car.

While waiting there in all my dirty hair/no makeup/bandaged glory, I see some of the big-wigs from the hospital pass me and hope they don't recognize me... then the president of the 2 hospitals I manage for came strolling by and said hello. I think he only had a vauge recognition... at least i hope!?

So home I was and feeling pretty good overall. I made it up the 2 flights of stairs into my apartment, was continuing on some solid foods, was taking my vicodin and putting the ice packs on my incision... was still a bit in and out of things and fell asleep while my mom was trying to talk to me about a movie we were watching (sorry!). Grandpa and dad came over for dinner and I was feeling pretty good so I took my pain meds, put an ice pack on my neck and decided to turn in for the night. Well about 3:30 am I woke up and had that horrible feeling that I was going to be sick. I ran to the bathroom and was immediately and violently sick... this was my worst nightmare come to life! My mom came running from the guest room saying things like "oh no!" and "take a deep breath!" I felt like i was going to die as I tried to hold my head on my neck in a stationary position so I would not rip out my stitches. Seriously - I have a gash across the front of my neck and now i'm so sick that I feel like my head is going to detach from my body - it was horrible!! And then it was over and I felt remarkably better (well in loads of pain but not like i was going to be sick again) and I crawled back into bed where Moses Jean put her paw on my arm and I drifted back to sleep... only to wake up about a half hour later to repeat the whole thing! This continued every 15-30mins or so until my mom called my dad to bring some Phenergan from their house... when he arrived at oh maybe 7:30ish I was in a down time but waited to take the meds until i was sick again so it would stay down and work for a bit. I took the meds and drifted to sleep hoping to not wake up for quite a while but I woke up again about a half hour later, sick once again. By this time my mom was calling her work to say she wouldn't be in and calling the surgeon's office and was (I think - i was a bit delerious) making plans to get me in the car to ER. Well thankfully after that last bout I drifted to sleep and stayed that way until about 2pm...

Of course when i woke up I felt like heck and was back on liquids and jello once again. I gradually took some tea and toast and then actually had real food for dinner... but avoided the vicodin completely because that's what was deemed the cause by my surgeon. Vicodin is EVIL!! So I went to bed Thursday night with some dread but ended up sleeping fairly well with no repeat of the previous night's nightmare. (YAY!)

Today I was feeling better but still a bit weak... just a bit bored because I only got 1 phone call of the millions promised (my mom had enlisted a bunch of people to check up..apparently they aren't good babysitters!). I did get caught up on my Gilmore Girls episodes and a couple movies and read an entire book (chick lit but still over 500 pages) and now i'm on the internet for the first time in a couple days :) Aren't you so lucky?

I really appreciate all the thoughts and prayers...keep em coming as the surgeon says it will be months before i'm able to raise my voice or attempt to sing even one note. My neck is still swollen and I have a nasty looking incision (ala Sweeny Todd) but if you can stand it, visitors are welcome. Otherwise keep sending your love via internet so i have something to do for the next week of recovery! :)

5.08.2009

Surgeon's Hands...

Just got back from Surgeon's office...

Started out with a general exam where he explained that I would most likely need surgery because of the size of the nodule and then a detailed explanation of thyroid cancer and its survival rates for people like me (under 50yrs and in good health and a woman - generally live longer than the normal population after treatment!). Yikes - uhm could this really be a possibility?!

Then we moved into the ultrasound suite where he did the u/s himself - said whoa a couple times then said I have "good news and bad news" and then showed mom and I what he was looking at... a massive nodule (over 3cms) on my left thyroid lobe that is compressing my carotid artery, my trachea (windpipe), and my esophagus (food tube) as well as the nerve that controls my vocal cords.

Good news: its most likely benign because it is mostly cystic and calcified parts
Bad news: it requires surgery

Because of its size it will most likely not respond to just taking synthroid (thyroid hormone pill) to shrink it and like i said its pressing on some pretty vital parts! Then he said he wanted to do the biopsy to be sure of things because if it is malignant then they will do a thyroidectomy instead of a lobectomy (take the whole thyroid out instead of just the left lobe of it) when they do surgery.

So had the biopsy - long tiny needle was stuck into my neck a few times after they numbed it with lido. It only hurt a little and still hurts only a little but that's kinda been my norm for a week or so. They are sending it out for pathology and cytology results and we should know benign/malignant by mid next week.

My surgery is scheduled for May 26th (day after memorial day) and I have to be in the hospital overnight. They do that because they want to make sure the airway wasn't compromised and I don't develop any complications. I will be off work the rest of that week and the following week to recover because apparently the thyroid is an extremely vascular structure in the body. I won't be able to talk much at first and will have some voice problems for a while because they have to inject a nerve stimulating substance into the nerve that controls my vocal cords to make sure they can see it during surgery and not cut it - he said it usually affects the singing voice more than the speaking voice so i'm off singing for quite a while too...

So that's as much as I know at this point... going to take it easy for a couple days sporting my new fashion accessory (small round neck band aid) and then try to sort things out and prep for surgery.