Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

10 Comments

  1. This is exactly what I was thinking when I stumbled on the article last night in the NY Times. You captured my thought process precisely.

  2. You might want to make it a little more clear in your post — this is only the type of radiation treatment that involves injecting radioactive iodine into the bloodstream, not the (more common??) type of radiation that involves a directed blast given to the patient.

    I’ve been through several daily-for-six-weeks cycles of the latter type, and I was a little freaked when I read this because no doctorly types had ever mentioned the possibility of other people getting contaminated.

    This whole thing seems pretty stupid and really, really insensitive. “We’re not sure if the teeny amounts of radiation coming out of someone’s sweat who has been PUMPED FULL OF IT will possibly cause a small amount of harm to other people or not”… well, fuck you! You’re not the one having it shot purposefully into your body!

  3. I’m shortly going to have this treatment – at the highest dose for thyroid cancer, not the lower dose for hyperthyroid – and it’s not done with an overnight stay hospital here, and hasn’t been for many years. It’s different to other forms of radiation treatment (because of the thyroid’s uptake of iodine) and doesn’t usually require sterile conditions. Honestly, I’d rather go home. Of course, I’m 2 hours away from the hospital (and there’s no public transport), so if I didn’t have someone to drive me I would have to stay in a hotel.

    I’ve got instructions to use my own cutlery and plates, to wash my clothes separately, and flush the toilet twice. I must not be close to other people for 2 days after the treatment, and after that not let anyone near my face and neck. That’s it. I’m not poisoning people unless I spit, sweat or urinate on them, and I don’t plan to do that!

    If thyroid patients are banned from travel and public transport, we’ll have to be in hospital because they’ll have no way of leaving, and I’m sure that’s not going to be happening any time soon. Maybe they should set up a nice lead-lined room?

  4. @jules: From the linked article:

    Rep. Edward Markey, D-Mass., says the problem stems from a decision years ago by the NRC to ease requirements that thyroid cancer patients remain in the hospital a few days after swallowing doses of radioactive iodine to shrink their tumors.

    I don’t know if that answers your question, but that is what I was going with. Like I said in the OP, I don’t have personal experience with cancer, I just object to setting restrictions on people who are already bearing a burden without taking a look at the more pervasive issues that cause the problem needing solving in the first place.

  5. Lilacsigil, it sounds similar to what Don was cautioned about, but his cautions seem to have been a lot more… intense. Part of why we argued (successfully, finally) to have Don stay in hospital for the entirety of his radioactive period was because the “stay a distance away from other people” distance in Canada is roughly the distance between where Don and I would both be sitting in this rather tiny apartment if we both sat in different rooms. Also, he wasn’t allowed to use the same washroom at all, and we only have one washroom.

    Of course, once we successfully argued that he had to stay in hospital for the entirety of his radioactive period, they changed their tune about how long it would be, how radioactive was too radioactive to be around other people, and also kept arguing that despite having agreed to the stay six months before, three months before, two weeks before, and the day that he got his radioactive pill in the lead case, they didn’t have to keep him because, you know, no one knew. Even people who on Monday had agreed didn’t know by Wednesday. It was amazing.

    (That sentence is a bit hard to unravel. In short: They kept saying “Oh, yes, I see on your records that you’re to stay until Friday”, and then every single day of his stay would say “So, leaving tonight, right?” and he would remind them that no, he was staying until Friday. Because he was too radioactive to come home. And then they’d say he wasn’t too radioactive to come home.)

  6. @Anna – true, I’m in rural Australia, and space is not a problem for most people here! The toilet is the only room in the house where we couldn’t be more than three feet away from each other. I don’t need assistance with most daily activities, so I won’t be putting any care workers/family members/staff at risk.

    That “send him home!” problem sounds ridiculous and an unfair strain on Don (and you) having to argue every single day to access the care which was already organised!

  7. Hi! Long time reader, first time commenter, here. I don’t have a lot of experience with thyroid treatment, but I did teach a class for Radiation Safety Officers which covered some discussion of radiation health physics and radiation treatments. So I know a little bit about radiation health regulations (Defined by 10CFR20 in the United States, other countries tend to take recent recommendations by the International Commission on Radiation Protection and the latest guidelines are called ICRP 103.) I can also speak a bit to the “fearmongering versus actual problem” issue, though not very much.

    Basically, in the US, federal guidelines for public exposure are set really, really low. A hospital is allowed, as an institution, to give someone 0.1 rem over the course of a year if they’re not a radiation worker or getting medical treatment. And if the hospital implants or injects a patient with a radiation source, such as radioactive iodine for thyroid treatment, the patient can only be released if the doctor is pretty sure they’re not going to give anyone else more than 0.5 rem over the course of their treatment. For a comparison, the amount of background radiation that you pick up over the course of one year is something between 0.3-0.4 rem, so that’s not that much above background. This is also way, way less radiation than will cause most direct adverse side effects such as hair loss and skin reddening–those start happening around 15-20 rem.

    The concern with iodine in particular, of course, is that your thyroid loves iodine and will collect it–so any radioactive iodine in your body will make its way to the thyroid. And that 0.5 rem dose that people visiting a patient are limited to actually has to take into account the radioactivity that they will absorb for all the iodine they’ve absorbed over the next 50 years.

    … which, I suppose, is a long-winded way to say that the hospitals probably have a legal obligation in the US to give patients a place to stay until the iodine has done its job, if they can’t be sure the patient can be properly isolated, even under the looser rules of 10CFR20 and 10CFR35 that Rep. Markey is complaining about. (10CFR35 is for medical use of radiological material, and where the “you can go home IF” regs come from. The Nuclear Regulatory Commission has the entirety of Title 10 on their website here: http://www.nrc.gov/reading-rm/doc-collections/cfr/ )

    And I’d say they also have a moral obligation to give those beds without charge, but when has the medical-industrial complex in the US been concerned about that? *sigh*

  8. I agree with what everyone else has said. It is unreasonable to expect cancer patients to avoid other people if they are not provided with a sterile environment. In the Netherlands, it would be impossible for people to avoid public transportation, etc. after radiation. It is kind of ableist that Congress is focusing on the healthy who might be possibly exposed to radiation rather than on how cancer patients can avoid exposing others to radiation with minimal inconvenience.

  9. Doctors didn’t even tell me that *I* was being exposed to radiation, when they irradiated my thyroid.

    They said: Don’t eat tuna for a few days, it will mess up the thyroid scan.

    And that’s all.

    I had to study the subject myself to learn what they did to me.

  10. I had the lower dose radio active iodine treatment for hyperthyroidism about 6 years ago. I was told the whole long list of precautions I needed to take (no touching, use disposible plates, etc.) and told it was to last 3 days. We gave up after a day and a half because I was living with my parents and it was really hard. They couldn’t not use the car I’d been driven home in and we certainly were given no info about seperately disposing the plates, etc. I’d used.