Today I met with Dr. E in Endocrine Oncology at U of M Comprehensive Cancer Center. It was a good appointment…not Point A, and not yet Point C. I am calling it Point B on My Journey.
U of M is a well-oiled machine. They provided me driving directions that took current construction into account, I got my own “Blue Card” so I don’t have to re-register at every appointment and I was in an exam room in less than 5 minutes. Dr. E spent more time with me than any other doctor I have ever seen. We discussed my log road to Point A (diagnosis), and she shared with me that the U of M pathologists diagnosed cancer on the FIRST biopsy slides that they received from Covenant (yes, the biopsy I had way back in April 2010!). That should make me really, really mad. But I am kind of past that point. Now I am just grateful. It’s probably been there for a long time. The good news is that over the course of a year, it didn’t grow any bigger!
Dr. E did a long physical exam, which was great. She even checked my reflexes, which all doctors looking at thyroid issues should do. She had me drink water while she checked my neck, and she said my thyroid isn’t even that enlarged. Then she did an ultrasound to check my lymph nodes…right there in the exam room. It was a whole new world! She said my thyroid looks pretty darn normal aside from the small calcified spot. The nodule is actually toward the middle, so removing half is really not an option. I had already decided I wanted the whole thing out and done with anyway. She said my lymph nodes look perfectly normal on the ultrasound, but she didn’t give me any promises that I was in the clear until after the surgery pathology report comes back. If all is as it look to be (just a small cancer spot, encapsulated, no spread) then no RAI (radiation with radioactive iodine) treatment for me! If you happen to be praying for me, please pray for that!
Before I left, we discussed my aftercare a bit. She said she only writes synthetic replacement hormone. I guess I kinda expected that. And she seemed taken aback when I asked about combo therapy (T3/T4 Cytomel/Synthroid). She said she was open to it based on my needs after trying Synthroid alone first. I guess I can live with that…as long as it’s BRANDED. Maybe that’s the drug rep in me, but there’s no way anyone is putting me on generic ANYTHING.
I liked Dr. E very much, and it seems she takes it one thing at a time. This is what I know today:
* Everything looks positive for a stage 1 diagnosis with no radiation
* I may qualify for robotic surgery, but I need to get that answer at my surgery consultation
* After my total thyroidectomy (TT), I will know if I need to have a body scan or if we can just follow up with labs (watching my thyrogloblin levels). I really don’t want to have a scan, because it means going on a horrible low-iodine diet and possibly getting off thyroid medication for 6 weeks (this is what thyroid patients call “Hypo Hell”).
* My surgeon will manage my meds for the first three months, and I will follow up with Dr. E in December
* I will get a phone call within 48 hours to schedule my surgery date and my surgery consult, and it will likely be sometime in early September
* After my surgery (Point C), the goal of my medication treatment will be normal thyroid function. This is quite different from suppressive therapy, which I assumed I would need. Since everything is so early in diagnosis, I might actually be able to get back to my old self before Christmas!
* I have a really, really great friend who comes through with unsolicited support every time I need it. You know who you are. Thank you. This whole experience has made me want 100 more of you in my life.
So here we are. Point B means I have some information, but no resolution. I am feeling really good about everything, and ready to focus on my sister’s wedding on Saturday. We’ll worry about Point C later!
Thyroidless 
Okay, since I'm not in the med field at all, why no generics?
Here is the quick version. Credit: Road Back Foundation.The FDA requires that any approved generic drug be effective within a 20% range of the original patented or brand name drug. This means that the effectiveness may be 20% greater or 20% less effective than the brand name so that two generic drugs could contain as much as a 40% difference from each other. Therefore, a drug may be legally chemically equivalent but not at the same time clinically equivalent. Also, it is my understanding that a generic drug has the same ACTIVE ingredients as the branded, but can use completely different INACTIVE ingredients. These inactive ingredients contribute to absorption, and in my personal experience, side effects. For a chronic medication, I want to know that every time I go to the pharmacy, I am getting the same pill.
Wow. Cool. I hadn't heard that before.