Radiation for the Special People!

My wonderful thyroid cancer sister (whom I’ve never actually met but feel like we’ve been best buddies forever) Laura asked me to share a little about what I’ve learned about RAI (or I-131) treatment for thyroid cancer.  All of this information comes from my own experience, some research online (with actual medical sites – not just message boards), medical journals, and an episode of NCIS-LA (don’t ask, you’ll find out later)

First of all, forget this being “the easiest cancer” or “the best cancer to get”.

It’s cancer.

It sucks.

Unlike “regular” cancers though, we thyroid cancer warriors get a type of treatment that no other cancer patients get.  In a way, we are the superstars of cancer!

Like the rest of the cancer club, we all usually start out with surgery (unless it’s leukemia or something).  Technically this is “debulking the tumor” which is sort of like chopping down a forest.  Problem is, can you guarantee there won’t be more trees in the same place in a year or two?  Nope.  Trees can spring up from seeds and, in a way, this is how cancer can “recur.” Unlike trees, cancer cells are wily, evil little buggers.

Typically with thyroid patients, we kind of find out which lottery ticket we drew after our surgery.   There are four major types of thyroid cancer (in order of occurrence)

  1. papillary (most common)
  2. follicular (second most common – this also includes Hurtle cells)
  3. medullary
  4. anaplastic

Typically medullary and anaplastic (which are very rare forms of thyroid cancer) are treated like other “regular” cancers – chemo and external beam radiation.  I’m not going to get into those here because they are so rare, because their treatment is so different, and because I just don’t know that much about them.  However, it’s those SPECIAL and most sought after common forms of thyroid cancer (papillary and follicular) that get a special treatment.

Now, if our pathologist is having a good day and says that our papillary or follicular cancer is small (usually under 5mm); contained within the thyroid (no exhibitionism allowed); and has not spread to the lymph nodes; we enter the large group of cool kids (thyroid patients) who are in the MONITOR stage.

Most endocrinologists (see, we are so cool that even oncologists won’t touch us) will just monitor our labs ever 3 – 6 months to see if they cancer has recurred.  While we are being monitored we will be given a suppression dose of synthetic thyroid hormones.  Now this dose is supposed to be high enough to put our TSH (thyroid stimulating hormone – it’s a pituitary thing) levels dangerously low (we’re like “opposite people” – we increase meds to decrease our TSH levels – yeah, bizarre).  Anyway, if our endocrinologists (or endos as we call them) can get our TSH levels to stay at 0.1  (0.3 is the lowest level of “normal” – see, we’re better than normal!) then our endo is happy and when our endo is happy, well, we feel like hell.

Anyway, papillary and follicular cancers have this thing they do – they emit thyroglobulin.  (Because the medical community is lazy, they call thyroglobulin “Tg” and so we will too – just to be cool.)  Tg is kind of cancer’s version of a trail of bread crumbs.  This trail won’t lead Hansel and Gretel home but might help you (and your endo if he/she is any good) figure out whether or not there are more trees popping up in Hansel and Gretel’s forest (mixed-metaphors are how thyroid patients think).  Meaning – is the cancer completely gone?  Are you having a recurrence?

The key to good Tg numbers is in the trend.  A one-time Tg test won’t tell you much.  What you want to watch is for if your Tg numbers stay pretty consistent, if they go down (a *good* thing) or if they start to climb.  A climb in your numbers could indicate a recurrence.  Numbers that are consistently high could mean that there are persistent cancer cells.  The goal four our Tg level is *undetectable* ’cause if there isn’t any thyroid tissue or thyroid cancer left there shouldn’t be any bread crumbs!  However, about 20% of us will create antibodies to Tg (called TgAB – duh) which can interfere with the Tg levels.  (TgAB is a whole different blog post someday – maybe)

Okay, for those still keeping up – if your Tg levels are consistently high or are going up you get to meet your friend and mine – radioactive iodine (also called RAI or I-131).  Don’t worry, it’s not as scary as it sounds.

 Oh hell, who am I kidding – yes, it’s as freak’n scary as it sounds!  

 Instead of getting pinpoint beam radiation like common cancer people, and because thyroid cancer is wily (never, ever forget that point!) we must have our entire freak’n bodies nuked!

Yup, we’re special.  High dose radiation – head to toe.  Can’t be around anyone else ’cause we are emitting so much radiation we could kill their thyroids.  Special diet.  Nasty side effects.  Isolation.  SPECIAL!

Typically the first time (yes, many of us have to do this more than once), you will be told to go off your thyroid medication for at least six weeks.  Those of us who have been through this fondly refer to this period as hypohell!  Just be warned, we’ve really downplayed it.

You will probably also be put on a low-iodine diet (LID).  You would be surprised what is not allowed on a low-iodine diet (basically anything with salt, anything with soy, anything with dairy, calcium supplements, many vitamins, many red-colored foods, processed meats, anything that tastes good . . . ).

Oh, and you can’t eat bananas for a week before, and until after, your TREATMENT dose.  Nuclear medicine told me this but could never explain why.   Good thing I’m too tired to do anything but watch TV.  Here it is kids, the tip that sort of explained by NCIS-LA!!

Apparently bananas can mask radiation because they are slightly radioactive.  Yeah, who knew?  I had no idea until an episode of NCIS-LA where they were looking for a nuclear bomb and figured it was being hidden in a banana processing plant to hide the radiation signature from the testing equipment.   Wouldn’t happen like on TV but it helps explain a bit. Thank you television!  (this is why I love you)

Last thing you want after going through all of the LID and hypohell is to hide the radiation from the machine and have to do it all over again.  Just be safe, kill the cancer, skip the bananas!!

More details on the LID are here: http://www.thyca.org/rai.htm

You will have to have your blood checked a few times during these long, long six weeks to check the “progress” of your hypohell TSH (meaning how high it has become or how hard your pituitary is trying to find thyroid tissue).  There are different levels for different hospitals but many hospitals will not start your RAI process until your TSH is somewhere around 30 or 35.  (Normal range 0.3 – 3.0).

When your TSH is this high you will probably be so exhausted and possibly depressed that if they told you that you could now lick a nuclear reactor you’d volunteer just to start taking your meds again.  Getting an idea of why it’s called hypohell??

Some hospitals may want to give you shots of Thyrogen (a very expensive, sometimes hard-to-come-by wonder drug).  Thyrogen helps to artificially increase TSH levels and you have to have two shots – 24 hours apart.  These shots typically run somewhere between $800 – $2000 each (many insurances cover these).  http://www.thyrogen.com/home/thy_home.asp

If you aren’t offered these for your first treatment, don’t panic – many endos (and radiologists) insist on “naturally high TSH” for the first treatment and do not use Thyrogen the first time around.

Anyway, your RAI treatment won’t just be some little quick procedure – there is a lot of prep.  Plan on a long, long week of blood tests (pregnancy tests are required too) and your tracer dose.  The tracer dose is used so Dumbledore the nuclear medicine doctor can calculate the exact size of the “treatment” dose you will be getting later.

Your tracer dose will either be in a pill or liquid form.  You will be taken into an isolated room and asked to sign paperwork that you consent to be nuked (at this point you’d sign anything).  After about forever you will be taken into another room where there will be all sorts of gages, Geiger counters, radiation warning signs, and a negative-pressure chamber/hood.  You’ll get used to this place, don’t worry, it’s not a scary as it looks.  (I lie)

Under that hood is where all the magic happens.  You will have to retrieve the liquid or pill yourself and keep it all under the hood while you swallow it.  The technicians are frighteningly strict about not exposing them to your radiation.  After it’s down the hatch, you will be scheduled to come back the next day to check on the tracer.  This is a pretty small amount of radiation – usually about 4mCi.

That’s two to four millicuries – named after Marie Curie who, ironically, died of radiation poisoning.  Other than that, all I know is you can’t have more than roughly 1000mCi in your lifetime.  How that relates to CT scans, x-rays, nuclear bombs . . . I don’t know but it’s great information for cocktail parties.

Anyway – even though it’s a small dose of radiation YOU ARE STILL RADIOACTIVE.  You need to stay away from pregnant women and small children (even on this small dose but especially when you are on the treatment dose!!), pets, family members, etc. and no swapping spit.  Don’t sleep next to anyone else, don’t share stuff (be that person you’ve always wanted to be – mine, mine, mine!)

Okay, back to subject.  When you come back the next day (or two – depending on your nuclear medicine program’s guidelines) you will typically sit in a special chair back in the nuclear medicine dungeon department and they will put some sort of small wand-looking thing against your neck, knee, and other places.

This wand-thingy is measuring background radiation and what amount your thyroid tissue may have absorbed.  I have no idea how this works – I think it’s something like a slow Geiger counter specially made just to bilk the insurance companies and us out of more money – or it’s just plain alchemy.

After you’ve sat in the “magic chair” for a while the technician will go talk to the nuclear medicine doctor.  A decade or two later the nuclear medicine doctor or technician will come back in and tell you when you will be scheduled for your TREATMENT dose (yup, nothing done up to this point has done a damned thing to kill the cancer).  You still need to stay on the diet, stay off the meds, etc. until you come back for your treatment dose (usually a day or two later).  This is your last chance to prepare for major isolation!!!

Some hospitals will have you isolate during your treatment dose in a special (and by special I mean HORRIBLE) room at the hospital where you will have NO direct contact with anyone, will have to change your own linen and utensils, and will not be able to take anything with you when you leave (books, magazines, cell phone, etc.).  Most of us don’t have hospitals that will do that.  We have to fend for ourselves during isolation.

SERIOUSLY you cannot come into close contact with ANYONE for roughly 10-14 days after your treatment dose or you could damage or kill their thyroids!  It freaks me out when I hear about thyroid patients who don’t follow these precautions!!!

Note:  I have been tempted to run through the radiation detectors at the airport during this time but I never wanted to isolate in prison besides, I’m usually too exhausted to even move.

Side note:  Speaking of airports – if you plan on flying in the next 6 months or so get a letter from the nuclear medicine department!!  You’ll need it.

The radiation leaves your body mostly through bodily fluids so you cannot share utensils, you have to flush the toilet 3 times after you use it, you have to wash your clothing and bedding multiple times, you should not use the same bed, towels, etc. as anyone else – it’s hell!  Here are more tips: http://www.thyca.org/rai.htm  Your nuclear medicine department will give you guidelines too.

If you are going to isolate at home, prepare ahead of time!  Ensure your loved ones (including pets) can be taken care of by someone else and not come into close contact with you for over a week.  You cannot share cooking/eating utensils so it’s best to use disposable.

Some do not have the option of separate facilities or spaces at home and are forced to isolate at a hotel or somewhere else.  Read through all of the material below before you isolate as the radiation will stick around long, long after you leave!

There are a million tips (like wrapping the mattress in plastic under a sheet that you are going to throw away) which can be found here:

Hint:  Support forums, blogs, and Twitter/FaceBook groups of thyroid cancer survivors are great resources for tips that the medical community overlooks.  However, make sure it sounds solid and is recommended by more than just one person.  Every group has a nut or two in it.

When you go for your TREATMENT dose there are a couple of things to keep in mind.

Often you will be restricted on what you can eat or drink first.  Check it out and write it down.  Thyroid cancer patients develop this thing we call thymentia.   Don’t laugh, it’s real!

You will need to ensure that, from the moment you are given your dose, you stay at least 6’ away from anyone else so . . .

How are you going to get home???  Most of us feel well enough to drive ourselves which is fine because there isn’t anyone else to contaminate that way.  Some of us have to be driven and for the ride home it is recommended that you be on the opposite side of the vehicle from the driver and in the back seat (as far away as possible).  Do not plan on taking a bus, subway, or any other mass transit – you will come into too close of contact with too many other people and I have heard horror stories of radiation detectors going off when people tried to get on mass transit.

Have something to do.  Hopefully by the time you get to the hospital to receive your treatment dose the radiation is on the way from the nuclear reactor (yup – it doesn’t grow on trees!).  However, because it has to be calibrated to the nuclear medicine doctor’s exact prescription – and because it is so hard to make, expensive, and dangerous – they typically don’t call to actually have it delivered until you get to the hospital.  Yup – plan on a lot of waiting.  This is the time to ask questions!  Once that magic pill/liquid in that heavy lead container arrives you won’t be able to ask questions or hang around – they will tell you to get out of there!

You might also want to check the exits – you don’t want to get into a crowded elevator at the hospital after your dose – ask at the reception desk the safest way for you to leave.

Once the nuclear person shows up with the lead container with “danger radioactive materials” written all over it, and everything is set up, you will be called back to the room with the negative pressure hood.  You will either be given a pill or fluid and you must finish all of it.  As soon as you have finished you are radioactive get the hell out of Dodge.  Most of us don’t feel different – at all.  Some have a bit of nausea or a light burning sensation in the throat or stomach.  Drink water!!!!

(For fun you could have them turn on the Geiger counters – I did for my first treatment and, sure enough, they all went crazy when I ran by.)

Isolation is BORING!  But that’s okay because, at this point, you are so deep into hypohell and are worried about drinking lots of fluids (flush that stuff out!), flushing the toilet multiple times, not sweating on anything, etc. that you don’t care – sleep sounds really good.

A few days later you will be scheduled to come in for your scan (whole body scan or WBS).  Remember, you are still radioactive so take precautions at the hospital.  You may have food or drink restrictions that day too.

After you urinate, you will be taken to radiology or nuclear medicine and you will lie on a very uncomfortable, very hard and flat plate.  You will be lying on this for roughly an hour while scanner plate is lowered over your body (starting with your head) very VERY close to your nose.  Just hold perfectly still – it will not smash you – and the plate sloooooowwwwlllyy goes from your head to your toes (like I said, it takes about an hour).

After the plate has passed your head and neck you can turn your head and, if there is a monitor you can see, you will see the outline of your body with what looks like stars in it.

Typically the “bright spots” (may be darker spots of lighter spots, depending on the machine – in this picture it’s the darker spots) indicate higher concentration of the RAI.  That does not necessarily mean cancer there!  Especially on your first RAI they expect uptake in your “thyroid bed” because surgery alone cannot remove all the thyroid tissue.  The RAI kills off any thyroid tissue “healthy” or not.

Also expect an increased uptake in your bladder (remember, it is excreted through urine), colon, salivary glands, etc.  The nuclear medicine doctor will have to interpret the scan and may order additional views or have you come back the next day to do it again (I’ve had both happen to me – don’t panic).

After the final scan you should be able to resume a normal diet (ask the nuclear medicine doctor or your endo) and start you thyroid meds again but remember you are still radioactive.  (and special)

You should already have an appointment set to review the scan and go over the new treatment plan with your endo (your thyroid meds will have to be recalculated now).   If you are planning on getting pregnant – discuss this with your endo.  It is recommended you wait at least a year.

Be warned, TSH levels are slow to change and often the worst effects of hypohell (depression) are felt the week or two AFTER the treatment dose.  It is common and real – if you need help, do not hesitate to contact your endo or regular doctor about depression!

Oh, it’s not over yet.  After the initial surgery (TT – total thyroidectomy), RAI, WBS, frequent labs, and medications many doctors will call you “cured” or “in remission” and you will only have to see your endo every 3 months or so.

Don’t be fooled, thyroid cancer is a chronic, life-long problem.

As I tell my friends with other (not as special) cancers:  you may have been hit by a bus but I’m getting dragged down the road slowly by a burning Ford Pinto!

Since my diagnosis, nine years ago, (and two surgeries, two recurrences with RAI, and three out of four of my sisters getting the same cancer), I’ve done a lot of networking with thyroid cancer survivors.  I highly recommend it – thyroid cancer is very misunderstood and one of those “you LOOK fine” diseases.  You need to reach out to others who have “been there, done that.”

What all of my online thyroid cancer friends have found is we ALL develop very similar problems.  Problems which the medical community may (or may not) relate to our cancer and treatments.  However, the real experts (patients) feel there is a very strong correlation with the loss of the thyroid and/or radiation:

teeth breaking, root canals, salivary gland damage,                                                              increased risk of other cancers, kidney problems,                                                                      gall bladder problems, arthritis, ovarian cysts, Type II diabetes,                                    autoimmune problems (asthma, allergies, RA, etc.),                                                                  serious gastrointestinal problems, osteoporosis,                                                                                             high blood pressure, palpitations, fast pulse,                                                                                depression, social anxiety, weight gain . . .

shall I continue???

Thyroid cancer is no easy road.  Just like I had printed on a t-shirt for my first treatment, “that which doesn’t kill us just gives us huge co-payments.”

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9 comments

  1. We shall get this message out……thank you again for contributing to my blog.

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  3. loopylisahulahoops

    one word,,,,,,,awesome ! xx

  4. Risnsun

    Wish I had known this before my first treatment! Would have made me understood the road ahead of me. Thank you for putting it in words that other people could understand. Hopefully it will get out there enough that others will understand how tough our road can be and how to prepare.

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