Monday, June 13, 2005

follow up (the whole body scan experience)

I had my follow up whole body scan this morning.

It really isn't so bad, dragging my butt out of bed at 6:30, cleaning my teeth and face, getting dressed, and hopping in the car to get to the hospital in the heart of downtown Phoenix by 7:45 so I could check in. Obviously there are better ways to spend a morning, but it really isn't that bad. If, on the other hand, that trip represented my daily commute, I would probably be suicidal after a month.

At the registration desk, whoever entered my appointment had omitted my middle name, and so the computer didn't recognize me. I told the woman who was registering me that I was just there on June 3, and I have been a patient there since November. It took a fair amount of I-don't-know-what to consolidate the two records, and then to figure out how much I owed them for my procedures. I spent over a half-hour on registration!

Then, on to the scan. My wait in the imaging department was mercifully brief, and then I spent another hour+ in the scanner. Being in the scanner is not difficult, but it's not relaxing, either. You really can't fall asleep because you have to hold yourself together, more or less. I don't know how bigger people manage on those narrow beds! I'm basically a twig (scant 130 pounds stretched out over 5 feet, 7+ inches) and I didn't feel very secure. The velcro straps they put over you don't really help all that much, but they do help.

Today my hands got a little numb; on the 3rd, my arms felt dead for their entire lengths. So today was better, although I have no idea why.

I wrote on the 3rd that I was thinking of that classic Gloria Swanson line, All right, Mr. DeMille, I'm ready for my close-up. A nuclear scan is about the closest close-up you can imagine. The scan plate starts out over your head and neck, and it is literally only an inch or so from your nose. I have said to more than one technician that I'm always worried that I'll sneeze and give myself a concussion. It's a funny comment, but it's also a serious consideration. The scanner plates are large -- probably at least 2 feet, square -- and fixed in place by their robotic arms that move them around. It's not like you could just tap the thing and have it swing out of the way.

My other thought on being in the scanner is that it is not so much like the traditional coffin as it is like a sarcophagus, the Egyption fitted coffins that all those mummified pharoahs were placed in. Even with the sarcophagus feeling, I prefer the nuclear scan to an MRI, say, because it's very quiet. Every time the MRI noise went off I felt as if I would jump out of my skin, no matter how hard I tried to brace myself for the next round. It's just so loud!

On the 3rd, I lay on the scanner thinking, I bet I'm going to light up like a Christmas tree, but the scan image itself is a negative, so the more uptake there is a given area, the darker that area appears. On the 3rd, my scan was clean, except for the expected areas of uptake, like the salivary glands, nasal mucusa, a bit in the liver and stomach, a little in the bladder. The preliminary scan they did on the 2nd showed a faint shadow in my neck, but in the final scan on the 3rd, that area was clear. The doctor told me they sometimes see some faint uptake in the carotid arteries like that, and since it was definitely gone on the 3rd, I didn't worry about it.

In sharp contrast to my scans on the 2nd and 3rd, which I fervently hoped would be clean, today, I was hoping that something would show up. We knew from my elevated Thyroglobulin that there was still some cancer somewhere in my body. If today's scan was negative, that would've been very unusual, and very bad. A negative scan today would mean that my cancer had somehow become undifferentiated, and was no longer taking up radioactive iodine. Since we use RAI to both monitor and treat thyroid cancer, that would've been dire news.

So I was quite relieved to see the three little dark spots along the cervical chain of lymph nodes in the right side of my neck, and not all that surprised, either. The doctor was pleased with the amount of uptake -- he was surprised that there was so much. Why didn't they show up on the first scans?, I wondered, but I'm not going to be torturing myself with that. If they had, I might have had to go for surgery... but they didn't (I saw the scans, I know!), and so we went with the RAI... and here's hoping it will do the trick.

I still think there is a very good chance that this last round of RAI will be the last treatment I'll ever need for my thyroid cancer, as long as I keep my TSH suppressed. I'm willing to do that. I go back for another scan in 6 months, and then we'll see.


Dreaming again said...

I wonder how close those scans are to the whole body scans I have to do for my lupus are.

They give me some radioactive injection, then an hour later, lay me on a tiny flat table, then scan me just like you've described. What area's show up bright are inflammed and show a problem.

The last one I had, I told the rheumatologist that when it starts, my chest wall doesn't hurt, but by the time they get to my feet, my sternum is killing me. Big mistake. So the last one was ordered double,they started at my head, and went to my toes, and back up again ... BIG difference.

The sternum that hadn't shown but slight inflammation the going down, was SEVERELY inflammed coming back up they told me to NEVER lay flat like that. (so what do they do everytime I have a procedure of some kind ... lay me flat like that!)

So now what's the next step with the 3 spots? Is it wait and see? Or what?

Sheik Yerbootie said...

Hey, you know that arm thing? I had that happen to me when I had the open MRI.

Then again, I have a cervical spine issue, so it wouldn't surprise me any, but still - I wonder if those cervical nodes are having some kind of effect?

Joan said...

Dreaming, your scan sounds like a PET scan. They use a radioactive glucose solution, I think -- anyway, it sounds like you know exactly what I'm talking about. You should ask about other possibilities for the scan, like maybe a standing one? I don't know, it just sounds bad -- they could also do 10 minutes at a time and let you sit up to try and not get so much inflammation in your chest. That sounds really dreadful -- I hope they can find a solution for you.

Next step for the 3 spots is wait and see, they sucked up alot of radioactive iodine, and with any luck it will kill them off. The RAI worked splendidly last time, so I'm hopeful it will work again this time. I go for another scan in 6 months. Whee!

About the cervical nodes and the dead-arms thing -- I don't think they are related, since my nodes are in the lymph chain that runs along the front of the neck, and are unlikely to be impinging on the nerves to my arms -- plus the nodes were all on the right side, and both my arms felt dead. I think it had to do with how my shoulders and the rest of me was laid out on the table, and how the straps were fastened. I need to figure this out because I much preferred the second scan to the first one, and it would be nice if I could duplicate whatever that position was!

Marlena said...

Hi Joan, Great blog--I'm so happy to read that you are cancer free now! I've been a papillary TC patient for over a year but I am a new blogger with a blog about TC. my best to you.