Cancer FAQ
Do you have a question about Julia’s cancer/experience? It’s likely your answer is here! Some of this is included in the first two update posts, however I’ve made some changes and additions since then.
What kind of cancer do you have?
Papillary thyroid carcinoma (my thyroid cells mutated)
Where is this new tumor (2022)?
In my neck, close to my clavicle, tucked behind my neck muscle, and snuggled right in between my jugular vein and carotid artery. I referred to it as sneaky like a spider -- it picked the optimal location for coopting my blood vessels to grow! (that's what tumors do) Very clever cancer cells. Very clever.
2023: One tumor next to a blood vessel and another next to my esophagus.
What stage is it?
Stage 1. But the joke's on me because staging is slightly different with thyroid cancer in people under 45 years old. There are only Stage 1 and Stage 2. Compared to the "regular" staging scale, I'm more like a Stage 2 because I had lymph node involvement that was isolated to my neck, as far as we can tell. There's no way for us to be certain it hasn't spread elsewhere other than just to wait and see. Fun stuff!
How big is your tumor (2022)?
7mm this time! My last tumor was 1.7cm and I had 3 of 5 lymph nodes removed with small growths as well.
2023: One is around 4mm and the other is around 6mm. Update from October ultrasound: one is 3x1x4mm and the other is unknown.
Are there other kinds of thyroid cancers?
Yes! There are three types, mine is typically considered the most mild, except that mine was more aggressive than normal. My original pathology showed that 10% (or it is 20%? Funny what seems so important and yet now I've forgotten) of the cells are "tall cells", also known as scary, aggressive cells. This is very unusual in cases other than cases of men over age 70, lol. Congrats to my overachieving cancer cells! I'm taking old soul to a whole new level.
Isn't a recurrence just a continuation? It seems like a misnomer.
Yep! I was never considered in remission or cancer-free, we simply didn't know where the remaining tissue was hanging out (that the radioiodine never killed off). We hoped I wouldn't have a recurrence, but because of the aggressive nature of the cells, my chance of recurrence was always higher. Most people have a recurrence within 5 years, and mine was 4 years almost to the day.
When were you originally diagnosed?
2018, when I was 29 years old. I have a VERY detailed timeline below that you can check out!
How do you keep tabs on your cancer?
I get bloodwork every 3 months to check my thyroglobulin tumor markers. When they go up, it indicates growth.
Once a year I get a thyroid ultrasound to check for new growth. I'm lucky my cancer scans don't involve radiation like. for instance, a PET scan, which more easily causes secondary cancers. It feels brutally ironic.
What treatment options do you have?
Surgery to remove the lump(s). There is a lifetime limit to how many surgeries you can have in one area on your body because of scar tissue, so the choice to operate has to be thoughtful. It's the most thorough in that, you know you've removed the whole tumor.
Ablation: I don't know a ton about this, but I believe it involves injecting a radioactive alcohol solution into the tumor to dissolve it. I'm not certain, but my guess is this leaves a greater chance of leftover tissue
Beam radiation: If my disease spreads a lot and surgery isn't possible, they sometimes use beam radiation for advanced thyroid cancers
Very fancy custom-designed peptide sequencing (to the tune of $100k), where they profile your cancer and give you a protocol of both Eastern and Western treatments to repair the broken peptides
I have an appt Oct 17th to learn more about any other possible options. They are pretty limited though.
What about another round of radioactive iodine?
It’s literally a radioactive iodine pill that you swallow. Thyroids are what process iodine, hence why it's iodine! The idea is that remaining thyroid tissue will try to process the iodine and die off. It seems to have very mixed results. Some people it helps a lot and many others report it basically being pointless (this is also me). The second opinion the molecular oncologist gave me was that my disease is dedifferentiated, meaning, it has mutated so far beyond behaving like thyroid tissue that radioiodine isn’t really an option. Likewise, radiation is better for fast-growing cancers, rather than slow, because the half-life means it doesn’t really stick around to last through the growth cycle of a slow-growing cancer (even for as quickly as mine grew, it’s still considered slow; my tumors didn’t pop up overnight, as in some cancers.)
What about chemo?
As far as I've been told and I understand, there are no chemo treatments for my thyroid cancer. On one hand this is great because chemo is a BEAST, but on the other hand, the thorough kill-the-microscopic-cells ability of chemo is appealing.
What happens if you have more recurrences in the future?
As it stands now, I will be mostly waiting to see if more tumors grow and then deciding between surgery and ablations. Normally we would leave the tumor to grow to be about 2cm before operating, but because this one is so close to my blood vessels, it not only means it has a lot of "food" to grow, but it also means that the cancer cells have an easy on-ramp to the super highway that is my circulatory syste,. This would make body-wide spread much simpler. Hence, we want to operate soon and get rid of it.
It's possible that I will not have more recurrences, but I have a sneaking suspicion that would be naive to think. I do hope they would at least be a little more spread out in the future, but all I can do is wait.
Is it possible you have other tumors right now?
Yes, however between my neck ultrasound and CT/PET scans of my torso to check for distant metastases, we should have a totally clear picture by mid-October.
What other questions do you have? You can always email me at julia@the-last-thing.com if you want me to add anything here or to a future update.