Micrometastasis? Maybe.

micrometastasis (n.): the spread of cancer cells from the primary tumor to distant sites to form microscopic secondary tumors.

My post-RAI WBS turned up activity in my “residual thyroid tissue and/or local lymph nodes”. (great specificity nuc med) The residual thyroid tissue is expected to show up because your thyroid is literally attached to most of the structures in your neck (most notably your windpipe) so they can’t physically get EVERY cell without damaging other, more important organs. The part about them not knowing if it was also showing uptake in local lymph nodes makes me entirely not confident in the nuc med physicians at my hospital. Well that and the fact that they didn’t think I needed a post-RAI WBS when it is ALWAYS done everywhere else… but I digress…

The WBS also showed “diffuse uptake in the left lung posteriorly” in a pattern “not consistent with focal metastatic disease.” What this means is there was RAI uptake in my lung but it didn’t show focal tumors (macrometastasis). If you remember, radioactive iodine is ONLY taken up by thyroid cells in the body (cancerous or regular) and whatever they gave me that wasn’t taken up by my residual thyroid tissue was excreted in urine, sweat, and saliva. There is NO reason there should have been any uptake in the lung with the exceptions of the presence of thyroid cells in the lung tissue OR an infection/inflammatory process (like pneumonia or pleural effusion). The recommendation by nuc med was to get a chest x-ray for further characterization which I had done on Friday. My chest x-ray was CLEAR. Meaning I have no pneumonia or pleural effusion or any other inflammatory process.

So what does this mean? Without the presence of focal metastatic disease (cancerous nodules) there is the strong possibility that I have diffuse micrometastasis of my cancer throughout my left lung. It could also have been a fluke in the machine but that is the less likely scenario.

So ok, what does that mean? In patients without metastatic disease elsewhere (this is why the lymph node comment bothers me) long term survival rates are very high when lung mets are too small to see on x-ray and have only shown up on post-treatment WBS. 10-year rates are still near 100% with these diffuse micrometastases… but when the mets become micronodules (<1cm) survival rates drop to around 40% and when mets become macronodules (>1cm) rates drop to 15%. It not showing on the x-ray is common in patients my age and is actually a good thing. Also, the dose of RAI I had (200mCi) is exactly what would have been prescribed had we known about this prior to my treatment and the follow-up course should not change at this point. In 8-12 months I should have a follow-up scan and if uptake is present on that scan, I will need another 200mCi of RAI, repeat that cycle until no uptake is seen on the post scans. We should also be monitoring my thyroglobulin levels and if they are elevated that will indicate persistent disease.

That all being said, I think its time for a second look/opinion on my case. I plan on calling my PCP for a referral to a thyroidologist and the only ones in state are at U of M. Any metastasis in thyroid cancer tends to mean higher chances of recurrence and/or further spread so I think having a specialist review my case would be a good thing at this point and if they have a more aggressive treatment plan in mind I will probably transfer my care to them.

So lots to think about, pray about, and try not to worry about in the coming months!

Sigh…

Today was my 1month post-surgical check.  He liked the way my scar was looking [much better than the 1st surgery] but said it will probably get pinker before it starts to fade.  AOK with me - ‘tis turtleneck and sweater season after all!  I told him about my experience with the RAI and he seems to be the only Dr that wasn’t surprised to hear of the “no side effects” side effects.  I am scheduled for a whole body scan tomorrow morning and he said I can call him next week for the results.  He also said I need to come back in another 6 weeks for a follow-up and another neck ultrasound and that we will check my labs again to make sure my meds are the correct dose.  He also said I don’t have to keep taking my calcium supplements much longer.  Right now I'm on 1 Tums twice a day.  If you remember, I started out at 2 Tums 4 times a day after surgery because of injury to my parathyroids.

So then we turned to the topic of when I can go back to work.  I said I was thinking that after 2 weeks of being back on my thyroid meds, I should be good to go.  Dr seemed a bit hesitant and said I would still be exhausted and coming out of hypo hell at that point because my TSH is extremely high.  I bargained with him and said I could work from home when I was feeling the exhaustion and he agreed to write me the note!  So I'm set to return on October 19th as I originally planned! 

Here comes the sigh…SIGH…

If you have seen me over the last year, you know that last year I worked very hard to lose 25-30lbs over the summer.  I was feeling better than I had in a few years [aside from unexplained thyroid symptoms].  Over the holidays and such I had gained back 5-10lbs but still felt really good.

Before	After

Well since the start of this whole thyroid cancer mess in May, I have successfully gained back all but 5-10 of those hard lost pounds. What really sucks is in just one week before my RAI, I gained 10lbs!!!  Seriously?!  At that point I was eating less than 1,000 calories a day. Basically my TSH went so high that my metabolism became non-existent and all of my body functions slowed to a ridiculous point.  There were days when I didn’t even feel hungry because what I ate the day before was still there.  Yes, some of it is water retention and swelling from surgery, hypo hell, and RAI and when my TSH gets back to "normal” my metabolism will return to “normal.”  But you can bet your bippy the weight isn’t just going to magically fall off. [Another thing to liken to pregnancy?] I know that I can lose it again but I also know it is going to be a long, slow climb back to “normal.”  Thank God I haven’t sold/donated any of my bigger clothes yet!

Small Change Of Plans

I am now getting a post-therapy whole body scan on Friday.

After thinking about it, researching things, and getting a second opinion from a top Dr in the country via email… I called my Dr and explained my position on wanting one. The therapy dose of iodine is much higher making the post scan much more sensitive to showing metastasis to lymph nodes, bones, etc.

My Dr said even if it did show metastasis, we have already treated it, it wouldn’t change the follow-up, and might make me worried about metastasis we have already treated. I told him I understood but I wanted to know exactly what I was facing so that if my 1yr scan came back clean, it would be even better news – or if something popped up on my 1yr scan that doesn’t show on this one, we will know it hasn’t been there long.

Well since the hard part is getting the isotope and I've already had that, he worked out a time for me to “go under the camera” and I'm feeling very good about advocating for my own healthcare.

I Am Radioactive!

Got to the hospital this morning about 6:45am and headed to the now all too familiar radiology department. I have been the teensiest tiniest bit radioactive since yesterday so I was whisked away to the Nuc Med area pretty much as soon as I walked in the doors. 

First up on the docket for today – the whole body scan!  Basically you lay on a long plank like thing that is only about 1.5-2ft wide for 45min-1hr trying not to move while the circle (camera) passes over your entire body. Then they take you to another room, aim a telescope like camera at your neck and tell you not to move for 5 minutes, then they point it at your leg and tell you the same thing.  Its all a very strange process and I realize now it is harder to be still when you are told to do so!

After the scans were done, we were taken back into the whole body scan room to meet with the Nuc Med Dr.  My parents were with me and he was slightly confused as to who the patient was (kinda uncommon to get cancer so young huh?) which I found slightly amusing.  He basically gave us an overview of what RAI is and it’s purpose – I felt like I was in kindergarten because my knowledge on the subject is much higher than his explanation, I let him continue for my parents.  If anything he told them exactly what I've told them so that was good! (I will accept my doctorate now, thank you very much!) Then he said I would be give 200 mCi’s of RAI!  Ok so 200 mCi’s is pretty much the top dose they give anyone at one time so this slightly freaked me out.  Unfortunately my brain wasn’t working fast enough to get the questions out before he was gone so we headed home for a few hours to return at 1pm for my dose. (they don’t stock this on-site)  So we went to my place and I took a nap, my parents ate some Wendy’s while I chowed on a plain baked potato, and we gathered up the last of my isolation “gear” before heading back to the hospital. 

When I returned I was once again taken right back into a little room where they brought in a lead lined capsule that contained my tiny container of 2 radioactive iodine capsules.  We then had a bit of confusion over me getting/not getting a post treatment scan so when I left I was waiting for a call back.  Well because of the confusion, my Dr called me and said they saw very little thyroid remnant left in my neck (good) and no indication of metastasis (v. good) so with the large treatment dose they expect that everything will be ablated (killed) and they didn’t see any suspicious areas that would make them need a second look with the more sensitive post treatment scan.  I will be followed of course, and the scans can be repeated at any time if my tumor markers go up so overall this plan feels comfortable by all.

So now I'm in my isolation location for the next 7 days so I don’t damage my kitties with radiation!

Here We Go…

I love this graphic (a combo of a couple clip art designs mashed together by moi) because to me the image portrays strength, confidence, and a certain sass but also the intimidation, fear, and uncertainty that comes with having a radioactive chemical coursing through your body.

Tomorrow (Wednesday) I will get my scan dose of RAI (about 3-5 mCi) at the hospital in the morning and then I will come home. 

Thursday morning I will return to the hospital to get my scan at 7am.  Then I will review my scan with the Nuc Med Dr at 8am.  The scan should tell us how much thyroid tissue I still have left in my body.  Based on the amount of thyroid tissue left, he will determine the treatment dose of RAI (usually 100-200 mCi) which he will then prepare and at 1pm I'm scheduled to swallow the dose.  From what I've heard, I will have to stay there for a couple hours to make sure there are no immediate side effects that would require a hazmat team, then I will be released to go home. Well I'm not going home exactly… but I will be free to go and will be in isolation from everyone for 7 days and then I will be isolating from pregnant people and kids for another week.

Sometime during my isolation period, I will be scheduled for my post-treatment scan which should give us a very clear (more sensitive because of the high amount of RAI) picture where any remaining thyroid tissue is – goal is to see uptake only in the thyroid bed area.  If we see anything in the jaw, chest, spine, or lung area we could be looking at metastasis to the lymph nodes, bones, or lungs.

So it all begins tomorrow and then we wait once again!

Gettin’ Dosed!

The surgeon’s office called this morning to tell me that my TSH was 35.67 and that my Nuclear Med stuff has all been scheduled! I will be getting my tracer (scan) dose of RAI on Tuesday and have my WBS, Consult, & Ablation dose RAI on Wednesday! Stop the bus – WHAT?! I’m not ready!!!

Everything I had heard said that it was hard to get into Nuc Med so expect at least a week lead time – guess that isn’t so at SH! Needless to say, I still have to figure out where I'm going to go for isolation, I haven’t been on the LID, and I have a wedding out-of-town to go to this weekend so I feel like there is no time to prepare or start cleansing my body of iodine! I have to believe that this is His timing and not mine… and that everything is going according to His plan…

So here is the timeline:

• Tuesday 22nd 6:45am (about 1/2hr-1hr) – head to the hospital, get my tracer dose of RAI, go home.
• Wednesday 23rd 6:45am (ALL DAY) – head to the hospital, WBS at 7am (2hrs), consult with Nuclear Medicine Dr. to discuss scan results and RAI dosing at 1pm, sometime in the afternoon receive my ablation dose of RAI.
• Wednesday 23rd – Tuesday 29th – ISOLATION
• Wednesday 30th (??) – Post-Ablation WBS – this one hasn’t been scheduled yet.

After this is all done, I can start back on the thyroid hormone meds and start bringing myself out of this extreme hypothyroid state (expecting TSH in the 60-80’s by RAI time). I expect for this to take about a week before I feel normal-ish again.

So I'm currently a bit stressed. Being gone this weekend for the wedding is making things a bit more stressful too. I have a lot to do & prep before Tuesday but I'm sure that everything will work out.

At least my hair will stop falling out sooner, right? Its been getting pretty thin so I was starting to worry!

Lab Rat

So ok, I realize I haven’t done an update on how I'm doing physically in a while. Mostly, there hasn’t been much to tell… Last week I got my labs drawn to check my calcium and my Dr hasn’t called to tell me I can back off on the Tums yet so it must not be normal yet. I plan on calling next week to see if I can start tapering the dose and/or if I need another level drawn soon.

Today I got my labs drawn to check my thyroid stimulating hormone (TSH) and I hope to hear about that on Monday. We need it to be at 30.00 or higher in order to schedule my pre-ablation WBS, radioactive iodine ablation, and post-ablation scans with Nuclear Medicine. They won’t even consider talking with you until you get to that point. I’m feeling positive that my TSH has been rising because I've been experiencing hypothyroid symptoms more acutely this week. I’ve been sleeping 12-14hrs/day, hair is falling out regularly, I've stopped feeling like I have hot flashes, and have stopped running a constant temp of 99F+ (that was annoying for over a week).

Yesterday and today I've been COLD. Yes, I know the weather has cooled a bit but I live on the 3rd floor, have my windows shut, layers of 3 shirts and 2 blankets and my hands and feet cannot get warm. I probably should try some socks too but I like the barefoot freedom of summer and its not officially fall… yet! I’ve also started getting the stupid body aches and headaches… and my mom and dad think I'm not making much sense or remembering things they told me so there goes my cognition! (sorry if the blog doesn’t make sense in the next couple weeks! lol) I have noticed it’s harder to concentrate on anything for more than a few minutes so its a good thing I'm a list-maker!

Other than that, I'm hot on the trail for sugar free lemon drops – I have to eat one every 15 minutes when going through RAI for the first 48hrs, even waking every couple hours overnight to eat them. The sugar ones can make you nauseated (hazmat team needed) and the increased acidity of saliva caused by the RAI is hard on teeth so adding sugar into the mix means cavity city. The parotid glands also tend to have swelling and blockage issues after RAI so having these on-hand to stimulate salivation is key. I also need to remember to buy baking soda to do rinses several times a day to neutralize some of the acid. The stuff I have is OLD and I'm NOT putting it in my mouth!

Still trying to figure out what to do after RAI too but all will be clear in time I guess! I’m not worrying too much about it until I know when it will be, hence why I'm praying my TSH went up, uP, UP!