Everything Changes - The Guide to Young Adult Cancer

By Jackie B-F

Thyroid cancer is referred to as the “good cancer” to have.  Treatment generally involves surgery followed by radioactive iodine, and cure rates for the disease are incredibly high.  After surgery, the only drugs I took were my daily hormones and a lonely round of radioactive iodine.

Less than a month after learning I was in remission, I joined a young adult cancer support group where almost everyone but me had been treated with a stem cell transplant.  My week and a half of radioactive quarantine paled in comparison to their experiences, and I felt that I wasn’t part of “the cancer club.”  I was reminded both how lucky I was and how alone I still felt, even among other young adults with cancer.

Since then, I have become active with a few young adult cancer advocacy and outdoors organizations. Unlike like the support group, participating in these organizations has affirmed my experiences as a thyroid cancer patient.  When other cancer survivors comment, “At least you got the good cancer,” I explain that my experiences haven’t been so easy and no cancer is a “good cancer.”  I went through treatment with co-morbid health issues, poor health insurance, and while living across the country from my family.  When I speak about the quarantine period required with radioactive iodine, other cancer survivors commend me for doing it all alone, and in some ways this is my right of passage into the cancer club.

It was during campfire on a First Descents trip with other young adult cancer patients that I realized my story is worthy of telling.  As I listened to other survivors whose diagnoses covered a wide spectrum, I understood that I shared in their stories.  On the most basic level, young adults with cancer know something that our non-cancer friends do not.  Many of us know what it’s like to live in a hospital, to battle insurance, and to feel isolated by a diagnosis.  Thyroid cancer patients are no different in that we too may fear recurrence, feel lonely, and are unsure about the future.  At the end of the day, regardless of our cancer type, we are all still young adults with cancer and this community is too small to have any outsiders.

For thyroid cancer patients, do you feel like a member of the ‘cancer club’?  If you have another cancer diagnosis, have you ever felt like an outsider in the young adult cancer community?

Read about life with thyroid cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Sarah J.

I keep finding myself thinking: If my doctor gives me a few months to live, would I want to live them the way I have been? The answer of course is no. I’m sure I’m not the first cancer patient who thought about quitting their job, moving to a tropical island, and having a torrid affair with a cabana boy (or girl) after writing a memoir.

Yet here I am today, back to the same old grind as before cancer with only a few changes. Why? Reality. Medical and credit card bills prevent any job quitting or island hopping. Since cancer entered my life, and especially during my transition from cancer patient back to an average Jolene, I have struggled to find balance between the reality of my life and that feeling that I should be out living it my way. I call this “Life’s Too Short Syndrome”.  Although I haven’t found a cure for this syndrome, I’ve discovered a few ways to make the reality of life easier to live with.

1. I created a bucket list. Seeing what I really wanted to do took away from that overwhelming feeling of there being so much I hadn’t done. In May I crossed taking a motorcycle class off the list, and I’m always checking craigslist for a cheap piano.

2. I set manageable goals for myself. I can’t quit my job, but I went back to school so that I’ll be able to get a job doing something I enjoy. I can’t afford a trip to Alaska or a tattoo sleeve, but I’ve opened a secret savings account just for me.

3. I try to tell the people in my life how I feel about them. (As much as I can without being creepy.)  I feel better knowing that I told them how I feel when we part ways…just in case.

4. I let more things go than I used to. Work drama and office politics used to drive me crazy, but now I try to ask myself if the situation falls into the ‘my problem’ pile or the ‘not my problem’ pile. When the kids are making a mess, I try to see the beauty in their play instead of thinking about what the house looks like.

Still, there are times I find myself going back to that original question. Maybe there isn’t an answer. Maybe I’m just supposed to do the best I can no matter how short life is.

How do you find a balance between the feeling that life is too short and reality? Do you think younger cancer patients experience this conundrum differently than older patients?

Read more about coping with the pressures of ‘Life Is Too Short’ in the book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

By Jackie B-F and Kairol Rosenthal

As a patient, you have the right to access your own medical records for a “reasonable” fee, according to federal HIPAA laws.  Most doctors’ offices and hospitals charge copying fees, which range widely in price, and add up if you have a thick chart. Here are a few ways to get your records for free or at reduced cost:

1. Make friends with the office staff. Receptionists and nurses deserve to be treated well for all the work they do for us and will often reciprocate our kindness.  Some may copy your records for free.  Be sure to say “thank you!”

2. Ask for your records a little at a time. Did your doc just read your lab report over the phone? Ask them to drop a copy in the mail.  Did they explain your pathology report during your appointment? Ask for a copy for your personal files.  Staff may be more inclined to print for free three pages here and there rather than 200 all at once.  And, if their office outsources medical records copying, they might rather make a three-page report using their own copier than process with their outside vendor the paperwork for such a small order.  Also, doctors and hospitals often don’t charge a fee to send your information directly to another doctor or institution.  If doctor ‘A’ sends a part of your medical file to doctor ‘B’, be sure to ask doctor ‘B’ for a copy of it at your next appointment.

3. Sign up for online charting. Some medical institutions are beginning to offer password protected online systems that allow patients to view test results and communicate with their doctors. Ask your oncologist, or other doc, if they have such a system and if so, sign up for it and continually request that lab results and notes be posted there.  Print from this system new records as they are posted and include them in your personal hardcopy files.

4. Get help from a social worker or patient advocate. These people know the ins and outs of the hospital.  Ask about financial assistance for medical records copying or see if they have the ability to waive your fees.  Remind them that you are a young adult cancer patient and describe the financial burdens your care imposes.

5. Offer to pay a reduced amount. As with asking for a reduction in the cost of your medical bill, care providers are more inclined to say ‘yes’ if you make a good will offer to pay some amount, even if it is only a fraction of the charge.

6. Understand the law. Many states set legal limits on medical copying fees. Google the name of your state and “medical records copying fees” to see if your state has such laws.  Be sure the information you retrieve is from an official state government website.  If you are being charged beyond what the law allows, politely explain this to your doc or hospital, and show them a print out of the law.  If needed, raise the issue with an administrator higher in the chain of command.  Calmly threatening to call your State Attorney General’s office is a last resort that often yields action.

How much have you been charged for medical records?  Have you found ways to work around the costs?

For more information on how to work the system and save money, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.