This week, Rep. Edward Markey of Massachusetts, released a report concerning the potential radiation risks that a radioactively treated thyroid cancer patient might pose to others. The Nuclear Regulatory Commission apparently deviated from the global standards governing hospitalization of patients who have received radioactive iodine in 1997. USA Today reported on March 18 that the NRC moved at that time to allow outpatient treatment of thyroid cancer patients. The concern surrounding this outpatient situation is that patients will sometimes choose to transition between hospital and home in a hotel where they could possibly put other guests at risk.
As always, I never pretend to be an expert about important topics such as this. A little bit of curiosity and research led me to the following interesting tidbits:
*Radioactive iodine is removed from the human body through bodily fluids: urine, sweat, saliva and stool.
*During the hospitalization period of the radioactive iodine treatment; any items contaminated with these fluids will be thrown away, all staff entering the isolation room will be monitored for their exposure and personal items will be prohibited.
*Special precautions will follow the patient from discharge such as keeping all linens, clothing, towels, and dining utensils separate during use and cleaning. Patients are advised to avoid close and intimate contact (which includes the car) with other household members, especially children and pregnant women. Other tips recommend separate sleeping arrangements, extra toilet flushing, attention to hand washing and cleaning of bathroom surfaces.
Please consult your medical team regarding any risks or precautions necessary concerning the risks of your radioactive therapy on your loved ones.
For more information, please see Rep. Edward Markey’s statement at http://markey.house.gov.
Excellent pages on radioactive iodine therapy preparation and post-treatment advice can be found on Columbia University’s New York Thyroid Center page; at www.endocrinologist.com and at the Thyroid Cancer Survivors’ Association, Inc.
A December 2009 study from the Association of Oncology Social Work confirmed the brutal truth. The cost of a cancer diagnosis is a heavy weight to bear. They surveyed hundreds of cancer patients, their caregivers and oncology social workers. They found that over half of the patients surveyed admit that their focus on recovery is impacted by the stress of paying for that recovery.
I found a few other tidbits interesting. Like much of the cancer experience, concerns over the financial aspects keep us isolated. The survey showed that most patients agree there is economic stress and concern yet only around a third of them will seek out their oncology social worker for help. On top of that, the survey showed that many caregivers are withholding the cold hard financial facts from the patient in order to protect their loved ones from the ugly truth. This comes from a loving place, truly, but also adds to their own already hefty burden.
Here’s the silver lining….there are people who are capable of lightening both the load and the mood. Your oncology social worker can help in a multitude of ways if you only will work up the courage to ask. Another bit of hard-earned encouragement shows that patients who have to return to the cancer rodeo tend to have a better handle on the process. Turns out that if you have to wade through the muck again; you’ll know who, what and how to navigate through the insurance company system, make life easier at the pharmacy and anticipate the impact on the bank account. We’ll put this under the heading of practice makes perfect and call it good.
The topic is even more complicated when you factor in the odds of success of a given therapy. Survival and quality of life both have a price tag yet those amounts are incredibly personal and individual. It’s a sad day when finances have to enter the decision making process. Yet, it is an important discussion to have with your medical team so that all considerations are on the table. Your clinician can help you determine the relative value of your treatment choices, if necessary. It goes without saying that there is a lot on the line here. An estimated quarter of patients will exhaust their life savings during a cancer episode and too many patients are choosing to deny treatment for financial reasons. Survivorship has its own set of challenges with questionable insurance eligibility, continued surveillance and secondary diagnoses.
In the midst of it all, I know that asking for help is hard to do. Sometimes just stopping long enough to think about what kind of help you need is enough to make you lose momentum. It’s nearly always worth the time for everyone involved so reach out and have someone help you carry the load. You have to have these tough conversations. You have to find the big and small costs that can be avoided, reduced or negotiated. It’s hard to fight with money issues on your back but it is also difficult to climb up the hill of recovery against a landslide.
Here is something that has been a confusing issue at our house. After my husband returns from his PET scan, how long should he avoid close contact with our son? He’s received conflicting information on this topic at various scan appointments. Of course, we’ve done the “Google research” and tere are certainly differing opinions to be found there too. If I had to summarize, I would say that most opinions seem to agree upon avoiding close contact with children for a few hours after the scan. Rather vague, I think.
It goes without saying that if we can avoid passing theoretical radioactive effects from one person to another then that would be a good thing…especially when that comes to our little people. Whether or not that is something to truly lose sleep over, I have no idea.
My own suggestion to anyone who might read this and have a scan in the near future is to ask these questions of your oncologist, radiology expert or other health professional. I am none of these and never pretend to be. I just know that it didn’t feel good to be told at the second scan appointment that my husband should avoid contact with our child when he wasn’t given the same warning the first time. It might sound a little funny to say that we wondered if our son glowed briefly, but really, it’s not funny at all.
What is your understanding of this issue? What precautions do you take with your children and spouse?
I spoke with Sara Blackmur, ACS PAtient Navigator at Seattle Cancer Care Alliance, two weeks ago. She told me that one of the most frequently asked questions she hears from parents is regarding hair loss and how to explain it to their children. Certainly that is one of the most identifiable changes for a cancer patient. It is when the world can see the truth. It is a loss of identity, an image of vulnerability and a cruel consequence of treatment.
It’s also not one of the first things that we discussed with our son during my husband’s treatment. I’m sure that we talked about it…I remember him rubbing his Daddy’s head and saying that it felt fuzzy. I remember the comment that he made about using jelly to glue Daddy’s eyebrows back on. I just don’t recall prepping him for it.
What I remember though about his hair loss was my own emotion. I remember sweeping it off the bathroom floor for weeks before we finally decided to bite the bullet and shave it. I remember excusing myself to go to the bathroom and cry after we finally did. I remember trying to be brave for our son and failing miserably. I remember how dark it looked on the white sheet that we had put down and how I felt as I shook the sheet to send it into the wind.
And you hear of people who have their hair grow back in a different color, texture or curly. My husband’s came back darker and definitely different: tufty, weird and with a mind of its own. But it’s here and so is he and that is all that matters.