Tuesday, April 19, 2011

The Best Cancer, Part 1: A Tale of 4 Endos

Tina Turner - Simply The Best

"The results weren't what we had hoped for but it's the best cancer to have." This is what my doctor said to me last November when I learned my diagnosis. Not insensitively. But as a way to not press my panic button and as time went on, I learned this sentiment from many. Thyroid cancer is the "good cancer". When one thinks of good cancers, one might think that there is no pain, no major impact or life changes, no pain, no stress. The best cancer would give you some sort of prize at the end or a lollipop like when I used to get when the medical system knew how to treat patients (alright, I was five years old). But so far aside from my daily lessons and my healing journey which are rewards in themselves, I am wondering is this really the best cancer? Cancer is cancer, right?

And today, for me, was a busy day. First of all, I went to see my new endocrinologist. I'll call him #4. The reason is because I've been through 4 endocrinologists (specialists of the endocrine glands and those who typically treat thyroid cancer in Canada. Well, not exactly 4. Today's could be # 4 if you count the thyroidologist in California who I consulted with. I want to be an Exceptional Patient, right? (see my Book Review for "Love, Medicine, & Miracles.")

How did I get 4 different endocrinologists? Well, if I tell you that then I would need to explain what it is like to get a second opinion for thyroid cancer treatment.

Endo #1
It all started when I met endocrinologist #1. Endocrinologist #1 was a nice man. However I had a few concerns that made me feel a bit unsettled. (I have learned to trust my gut.) He told me that I would need to do the radiation based on my surgery results. (Agreed.) Then he presented me with the risks and ranges of possible radiation dose. Then he asked me what dose I wanted. He actually asked me. (I wondered if this was customary.) "I don't know, what do you suggest?" I asked. After all, I was not an MD nor did I complete training at the University of Toronto. He told me 50mC (that milli-Curies the measurement for radiation). Anything higher, he suggested, would pose a greater risk to my fertility. What? Panic buttons began to go off. ("Hmmm... yeah, I kind of want to have some kids," my fiance would say after we left the office.) He did not seem to want to go higher. Plus he said that studies showed that radiation dosages between 30-100 do not show any difference in effectiveness. He suggested I see my GP (general physician) to get information about fertility issues.

Confusion and Worry
I went home a bit of a wreck but I didn't let on to my endocrinologist about this. I quietly took my notes and listed other things which I would rather not list here. After I went to the Ontario College of Physicians website, I saw that my endocrinologist was recently certified. (Although he is an immigrant and also studied medicine in his country years ago.) Not that I had anything against a new or young specialist. (After all, my own doctor is fairly young and she spotted my thyroid cancer lump during a routine physical exam.)

So I went home and consulted with my other health professional, the INTERNET. I went on the Thyroid Cancer Canada site and asked in the online support group, if it was common for a specialist to ask you what dose you want. And what dose should I have? The response I got was 100 miC was the standard dose. When I told my endocrinologist, he said, "Nadia, we talked about this already. A higher dose of radiation would pose a higher risk to your fertility. I would go no higher than 60, maybe 75. But that's it.") Endo #1 still booked a date for my Radiation.

Some of you may be wondering why I would want a higher dose in the first place. Well, first of all, I want the cancer to be gone. All of it. I don't want to have to do a repeat of radiation in the future if the dose was not high enough to kill the thyroid cancer cells which are left. (Plus, from all of my research, I could not find any significant risk to my fertility, some slight changes or delays but these were temporary. I was still at an age young enough that the risks were low. Phew!)

Endo #2
Then I accepted an offer from a coworker who I taught with years ago to call her brother who was a thyroidologist (technically endocrinolgist #2) in California. (I eventually spoke to him and he said "100miC" is the standard with no significant risk to fertility. And I should stay away from that Endo #1 since 50miC is too low.) Okay, but he is in the US and I know that some things run a little differently there. Thankfully, this specialist spent 30 minutes on the phone with me (daytime long-distance cell phone minutes, that is, which helped contribute to my recent $ 500 bill). "You don't know how lucky you are to be talking to me." Yes, he really said that.

Endo #3
In the meantime, I went to my GP to find out about fertility risks. She said this was not her expertise and rightly so. She said the endocrinologist who is prescribing the radiation should no. Plus, I wanted to get a second opinion from a Canadian endocrinologist (in my own city) and possibly get a new endocrinologist PERIOD. To get that second opinion, she could not provide that reference and I would have to contact my surgeon which was no easy feat. He is a busy guy. After two weeks of phone tag and daily calls to his office (his receptionists must think me a stalker), I spoke with him. It took him another two weeks to locate an endocrinologist (#3) but she could not take me on so then he referred me to a different endocrinologist (a different #3). She was wonderful in that she sent me a package in the mail and a detailed blood test requisition (five vials of blood baby!)

So I went to endocrinologist #3 office, hoping to get an appointment that week because I forgot to mention that endocrinologist #1 had already scheduled my radiation and at this point I did not tell him that I was getting a second opinion. (I was scared of hurting his feelings. I seriously have to work on that.) When I got to endo #3, her very curt secretary said. "Ha. You're lucky if you can get an appointment in June. We're booking in July and August." Thankfully, she had a cancellation-- five weeks away. (This was a very stressful time. These wait times were too long since I was also trying to get find out if I was being covered for Thyrogen, a thyroid cancer drug, which was going through a global shortage and I was hoping to finish my radiation treatment in time to attend a Young Adult Cancer retreat.)

A shock
So then I had to call back endo #1 and tell him that he had to cancel my radiation because I wanted a second opinion. (I was dreading making this phone call.) But unlike the berating I expected, he was totally fine with the fact that I was getting a second opinion. And he insisted on a follow-up with me in the meantime to ensure that my levels.

Finally, my appointment with endo #3 rolled around. I sat in the waiting room for probably 45 minutes and then it was my turn. Endo #3 was a very matter of fact, middle aged woman and a source of inspiration. She was detailed and had already acquired so much information on me from the detailed report of my surgery (which I didn't know existed) to my family history and medical records and even my blood (she requested five vials worth of blood tests people to give a SECOND OPINION, people). Endo #3 was generous with her time. She gave me a lecture about thyroid cancer (complete with diagrams and readings), examined my vitals (blood pressure, weight, etc.), and provided her advice for treatment. The whole appointment was approximately about 1 1/2 hours. (Now that's what I'm talking about!) Are you taking patients? I asked. "Honey, if I took every patient who came in here for a second opinion, I would need to close my practice." I took that as a no. But what dose did she recommend: 100miC. No significant risk to fertility. Thought so and before I could gloat. She asked me what Endo #1 said. I told her that he wants to give me 50miC. "That should be fine too," she said. "Should" be fine? That's a difference of 50 mC. That's huge!

Back to Endo #1
Armed with all of this information, i felt relieved that my Endo Ordeal, which lasted several weeks, was over. I went back to endo #1 who I realized was sweet and concerned. He followed up with phone calls and rescheduled my radiation appointment and the dosage? 100miC. Endo #1 told me to start my Low Iodine Diet on Thursday, April 7th. I went in last week for an appointment, armed with back-up: my mother and my fiance. Endo #1 explained the details of my radiation for probably the twentieth time now.

Another Twist
Then last Thursday, quite out of the blue, at 7:23 am, my cell phone rang. It was Endo #1. He was about to make some professional changes and he wanted to ensure my care. So he transferred me to a new endo. Endo #4. Endo #4 had 25 years experience with thyroid cancer. (When I checked the Physicians website, Endo #4 became a doctor in 1975. Two years before I was born.) I thanked Endo #1 for his support and agreed with him, quality of life is important.

Imagine after all that, I got a new endo without having to look for one. After all that stress and time and phone calls, I was getting Endo #4. I was beginning to really like Endo #1 and would miss him (and his crazy quirks-- saying one thing first, then changing it, for example.) He took the time to explain things, you could actually get him on the phone, and he would actually make his phone calls personally and not through his secretary.

Endo #4
So today, I met Endo #4. He was an older gentleman. Polite but not excessive. Professional and brief. And when I stood up to shake his hand at the end of the appointment, there was an awkward silence. Well, at least I'll see him again on Thursday when he gives me the radiactive brew (I-131).

Off I went off to the lab for another blood test and I didn't even get a lollipop.

NOTE: This story illustrates in one way that the course of treatment for Thyroid Cancer is not always so straightforward and consistent. In fact, one of the endocrinologists told me that a patient of hers refused radiation and she's fine. I found this inconsistency very unsettling and confusing.

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