Get Hip To The Lingo

So most of you know I love, love, love to abbreviate things that I talk about all the time so I thought i would share some lingo that may be helpful when reading my posts and helpful for me so I don't have to remember to type out the whole thing!

1. PT - partial thyroidectomy, lobectomy, hemithyroidectomy - this is the surgery where they take half the thyroid, usually reserved for very small tumors and benign nodules. Having a PT usually means you are on a low dose of thyroid hormone medication to keep the remaning side from working too hard and making more nodules/tumors.
2. TT - totaly thyroidectomy - this is where they take out the whole thyroid gland and sometimes the parathyroids. Having a PT means you must be on thyroid hormone medication for the rest of your life because your body will [should] produce none. This is usually reserved for more serious thyroid disease and larger and/or multifocal tumors.
3. WBS - whole body scans - done with a small amount of radioactive iodine, this scan can show areas of thyroid cancer metastasis (spread).
4. Mets - metastasis - means the cancer has spread
5. Pap - papillary cancer - this is a well differentiated type of thyroid cancer that is considered more treateable than some of the other types such as medullary & anaplastic.
6. Levo - levothyroxine - the generic name for the thyroid hormone medication taken daily
7. Hypo - hypothyroid - this means you have extremely low amounts of thyroid hormone working in your body so your thyroid isn't working or you aren't on enough meds. There are lots of unpleasant side effects to this such as: hair loss, extreme fatigue, extreme sensitivity to cold, pale complexion, dry skin, low pulse, pain & stiffness in your muscles and joints, depression...oh yeah and the ever popular weight gain! Basically ALL your body processes slow waaaaaaaay down.
8. Going Hypo - going hypothyroid...on purpose - thyroid cancer patients must "go hypo" before getting a WBS to check for METS [like how i started the lingo talk already?]. This means you need to be off all meds for 4-6 weeks to become extremely hypothyroid so that the radioactive iodine used in the scan will uptake better in the thyroid/cancerous cells.
9. LID - Low Iodine Diet - in addition to "going hypo" thyroid cancer patients will be treated to the LID for scans and radiation therapy prep. On the LID you can have no: Dairy, shellfish & anything from the sea including sea salt, seaweed..., eggs, red dye #33, just about all pre-packaged foods, soy based items, molasses, some beans, potato skins, rhubarb and.... chocolate! This diet is pure torture made even worse by the fact that you will be experiencing all the effects that being hypo can cause.
10. RAI - Radioactive Iodine Therapy - this is pretty much what it sounds like. Thyroid cancer patients are unique in that we usually don't get the standard types of chemo or radiation - we get this combo of a chemical that is radioactive. We either swallow a pill or drink of a large dose of radioactive iodine. This makes us literally radioactive for about 7-10days. Because of this radioactivity we must be isolated from people and animals - sometimes in the hospital where even the doctors and nurses can't come in the room until the guy with the geiger counter comes and says you are no longer a danger to the general public. During this isolation time, you must wash your sheets & clothes every 24hrs, eat off disposable utensils, flush 3 times after "going", spit into the toilet, shower 3 times a day, oh and suck on lemon drops hourly for the first 24-48 hrs among other things.

I think that's a good start - now study! There will be a quiz! :)

Pancakes Make Everything Better

My mom and I went to my big doctor's appointment today.

For those of you out of the loop a bit - it was my first appointment since finding out I have cancer and the appointment at which we would discuss further actions.

In the nearly 3 weeks since getting my diagnosis by phone call, I have been researching thyroid cancer and in the week since I got copies of my path reports, i've been researching my specific type of thyroid cancer. So I walked in with my notebook of information and my list of 20 or so questions to ask. The doctor started out by telling us his thoughts and assesment on things and then let me ask my questions...

The biggest question I had was "what size was my tumor?" The path report does not mention a size which is slightly odd [but all of this has been] and so he called the pathologist who was miraculously on duty right before the holiday. She said they couldn't define a size really - I could have had cancer first and a cyst grew around it which spread the cells out or the cyst grew first and the cancer cells developed all over the lining. Either way she didn't think if you put all the cancerous cells together that it would be much more than 1/2cm. He asked her if she thought they got it all and what she would do if it was her body they were talking about and she said "I would want the rest of the thyroid out."

He then said to us that yes, with me being 30 and having a very long time for a chance of any remaining cancer cells growing and spreading that he thinks taking the other half out was a good idea but the decision was ultimately up to me. With everything I've read [estimated 80% have cancer in both lobes of the thyroid], I knew going into the appointment that I wanted to do everything to get it all out.

I need 3-6mos to heal from my prior surgery so we are looking at early September for the thyroidectomy completion. Four weeks after that I will have a whole body scan with a small amount of radioactive iodine to check for remaining thyroid cells in my body. And a few weeks after that we are planning on a large dose of radioactive iodine to kill off any remaining thyroid cells. I will have to be in "isolation" for a week because I will be radioactive and will leave traces of radiation on whatever I touch. Isolation means total isolation for 24-48hrs where no one is allowed in the room, then pretty much total isolation for about a week to ten days after that with minimal contact with adults and still no contact with children. Well I have 2 cats and have heard horror stories of pets getting radiation poisoning from their owners so i'm considering a hotel for the week if i can scrounge up the money! After that I will need blood tests and scans periodically to check for recurrence. Starting tomorrow I will be on thyroid hormone medication for the rest of my life to supress recurrence and keep my body functioning.

If all goes well, by Christmas of this year I should be able to say that I'm "cured". [correction: in remission, "cured" means no trace of the disease for 5yrs]

After all that news, mom and I went out for pancakes.

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 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).