Radioactive Iodine and Whole Body Scan

After the 4 masses on my thyroid had been removed along with my entire thyroid, it was time for treatment, to kill any remaining thyroid tissue (because cancer can grow on this tissue) and to kill any distant site cancer that had possibly metastasized.

Radioactive Iodine (RAI) I-131, is unique in the fact that it is the only chemotherapy and radiation treatment that is given together in one oral  dosing.  It is also unique in that there are usually very few side effects compared to other forms of chemo.  No major hair loss, weight loss, energy/appetite loss.  There are possible side effects that can show up both immediately and some weeks later.  If the thyroid cancer was to return to distant sites and cannot be treated with RAI, is RAI resistant, or certain types of thyroid cancer-these do need treatment with more traditional chemotherapies.  

There are very strict rules when receiving RAI.  You must plan for it beforehand.  You will be in isolation for 10-14 days when you have your first RAI dose.  This treatment dose is always higher than subsequent diagnostic doses.

You need to have a bedroom and a bathroom that only you are going to be using.  You will be radioactive after receiving the RAI and MUST be in isolation.  You can affect other's thyroids, as the RAI binds to Iodine, which is otaken up by the thyroid.  Being exposed to you would be very harmful to their thyroids, and animals also.  You will most likely be following an Iodine-Free diet before the scan.  Since Iodine is taken up by the thyroid, you do not want to be eating food with iodine and adding to the levels of iodine before the RAI and whole body scan.  Personally, my doctor did not recommend the iodine-free diet to me. 

Staying in the hospital used to be done but insurance doesn't pay for that anymore, and the room must be covered in plastic, meals are left at the door, nurses do not enter the room.  Staying in a hotel is not recommended as you would expose the cleaning staff and the next guests to the RAI.  

You need to plan using either paper plates and plastic utensils , using a designated trash bag for just your trash.  This bag must sit away from other people and when finished, kept in the garage or a room away from others for two weeks before you throw it in the main trash to be disposed of by your city.  Trash trucks are scanned for radiation before they dump their load. They can actually trace where a bag of high radiation came from if needed. Letting your bag of trash sit for a couple weeks allows the radiation to dissapate.  We are responsible for other people's exposure to us, and our radioactive items.  You can also use one or two regular plates and regular utensils that you will be washing separately from anyone else in your home.  Buy some sour candies to suck on as RAI affects the salivary glands and sucking on something sour will keep you salivary glands working at their best.  

In the bathroom, flush the toilet twice after using.  Keep any tissues, etc in a separate trash bag.  If you do not have the ability to use a bathroom by yourself, make sure you keep it clean for the other(s) using it.  Water alone is more effective to rinse the sink and shower than using a cleanser each time.  Keep your towels in your room.  You may have to come up with new sleeping arrangements for this time, asking your mate to sleep on the couch so you can be in the bedroom with a closed door.  

Of course the perfect situation is living alone, but you will have to figure out what works best for your situation.

My experience taking RAI was- I started on Monday, going to the hospital for an injection of Thyrogen, which lowers your TSH.  Tuesday, I went back again for the second injection of Thyrogen.  Wednesday, I went to the Nuclear Medicine department and the tech got my pill from a steel case, then inside that was a very thick, egg-shaped steel holder.  She was covered in X-ray gear, with the addition of a high cover over her neck to protect her thyroid.  The doctor stood about 6 feet away.  She opened the steel egg and poured the capsule into my hand and I took it immediately.  The moment I swallowed it, I was radioactive.  The doctor stepped farther away as I was led out by the tech.  We walked quickly through the hospital. 

You have to arrange transportation directly home.  Driving yourself is best.  If you cannot do that, sit in the back seat on the opposite side of the driver.  Do not use public transportation. When I was taken outside the hospital to get my car, the tech stood with me far away from others.  I had valet parked and she told the valet to leave when he brought my car, and she made sure I was in the car safely.  

Isolation begins the moment you get home.  You will be in isolation for 10 to 14 days.  This time allows the Radioactive Iodine to kill any thyroid tissue that is cancerous.  This is a great time to catch up on your reading!!  I'm a big reader so that took up a lot of the time.  Get some light reading too, magazines are fun.  Having a TV in the room is essential--binge on your favorite show!  I wrote a lot too.  Talking on the phone is also a good way to feel connected while you're alone. Reach out to friends and family, who should know about your treatment so they can understand you may need more connection on the phone than usual during this time.  

Some patients can feel lonely during this couple weeks of isolation, but preparing with the above items will make you feel less alone.  The time goes by quickly after all.  

When the isolation time is up, you will be scheduled for your full body scan in the Nuclear Medicine department.  You are no longer radioactive and life can return to normal.  This scan is a simple test for the patient, you lie on a table on your back, the scanner moves very slowly over you, it's very close to you.  It takes about 1 1/2 to 2 hours. 

Your Radiologist will meet with you after the scan is read and go over the results.  Mine was clear, and the 2 diagnostic scans I've had in the past few years were clear also.  At this time, my Thyroglobulin is high again, it's watched for a slow rising pattern which could indicate the return of cancer.  Breaking my femur got in the way of having my diagnostic RAI and body scan, so I'm playing catch-up on that and a few other things.  

Gentle Hugs....and a tolerable pain day.

My Total Thyroidectomy for Thyroid Cancer

After seeing a Specialist about the masses on my thyroid that had been found on Ultrasound, he ordered a Fine Needle Aspiration or FNA.  This is a biopsy.  

I laid on a table and the doctor asked me to extend my neck.  He then injected a local anesthetic.  Under flouroscopy, he guided the needle into a nodule and aspirated cells from that nodule.  He repeated it again into another nodule.  It didn't hurt per se, it was uncomfortable.  This took about 60 minutes total. He did not aspirate from all 4 masses.

The Endocrinologist set an appointment for the results to be discussed.  He told me I had Hurthle Cells show in the biopsy, a rare type of thyroid cancer cells.  Next, we talked about my choices.  I could have a lobectomy, removal of one thyroid lobe. The other choice was a total thyroidectomy where the entire thyroid is removed.  With the partial removal, there was a chance I'd have to have the remaining lobe removed in the future, if another nodule was to grow there.  Because I had masses on both sides, it was recommended to have the total thyroidectomy. With that, I'd have to take thyroid replacement hormone for the rest of my life.  I'd do anything to avoid another surgery and told him let's do the total thyroidectomy. The surgery was scheduled quickly. 

I would stay one night in the hospital if everything went well.  The usual pre-surgery checklist was followed and the morning came for surgery. Spent some time in pre-op and went into the surgical suite, then I was out.  Apparently it went well and I woke up in my room.  The next day was my 55th birthday which matters to the thyroid cancer situation as the cutoff is 55 and above, and 55 and below for staging and survival rates.

My surgeon came in and told me that I had 4 masses on my thyroid and that one was very large, over 4cm, like walnut size and he had some difficulty getting it out.  He said that the pathology results would be sent to my Endocrinologist.  During surgery, the parathyroid glands were taken out and then  reimplanted after the thyroid was removed.  They are small glands, 4 of them, that lie within the thyroid gland.  Recovery took a couple weeks, the incision was healing well.  It is interesting to note that my thyroidectomy was the last one my surgeon would perform.  My endocrinologist said he stopped doing them due to the difficulty-- as all thyroid tissue possible needs to be removed, and the length of the surgery.  A thyroid cancer patients favorable outcome through the years rests on the initial surgeon skillfully removing all thyroid tissue.  

I went to see the Endocrinologist and he told me the pathology results showed that I had  Follicular Thyroid Cancer, Stage 2, with invasion of the vascular system. It was well-differentiated which is what you want to see.  These types are easier to treat.  Follicular thyroid cancer makes up 10-15% of all thyroid cancers.  There are roughly 4 types.  Papillary is the most common and makes up 85% of thyroid cancers. 

Next was the discussion about treatment with Radioactive Iodine (RAI) or I-131.  This is to kill any thyroid tissue/cancerous tissue remaining.  This is both chemotherapy and radiation together.  A full body scan is then done which shows any metastisis to distant sites.  

Next--Radioactive Iodine treatment and full body scan.

Gentle Hugs....and a tolerable pain day.