Write up notes on drs visit
Vocabulary
Aka, the words that I’m using and their meaning.
Vernacular
Vernacular is the everyday common tongue, used by the everyday, average person.
It is NOT the proper language. It includes slang, regional variations, and a host of other things.
Which creates discord and bullshit. Esp with pedants and know it alls.
Denotation
Denotation is the literal or objective meaning of a word, as defined in a dictionary, without any emotional associations or metaphors.
Alas, some words have multiple denotation. For example: literal now means literal and figurative.
Connotation
A connotation is a commonly understood cultural or emotional association that any given wordor phrase carries.
Research
- That thing that scientists do using the scientific method
- That thing that everyone does aka looking up facts about something.
Feel free to disagree. I’ve already unfriended and blocked you. Your therapist can explain what pedantic asshole means.
Worse, a word can have two contradictory definitions. Contronyms.
A simple word like “theory”, which confuse the ignorant.
I have had a number of insane discussions with friends who are 100% certain that I’m wrong about the words that I’m using. They’re wrong. Completely.
Some is ignorance, some is we have greatly differing vernaculars, some they’re “upset” and “afraid” and project that.
Radiation
When a lay person uses radiation, when discussing “cancer”, they always mean, radiation therapy (RT, RTX), ionizing radiation. This is created using a Linear Accelerator (LINAC): This is the most common machine used for external beam radiation therapy. It accelerates electrons and directs them to hit a heavy metal target, producing high-energy X-rays.
What confuses most norms, is that UV light which tans you, is radiation, so is infrared light, that heat from the stove, is radiation. So is visible light. But alpha particles and beta particles are also radiation.
And your phone and WiFi use radio waves, radiation. Microwaves use radiation.
Cancer
Cancer is a stupid word. It is used collectively to group over 100 different diseases that affect humans.
There are five broad categories, with countless types within the categories.
1. Carcinomas: The most common type, originating in the skin or tissues lining internal organs (e.g., lung, breast, colon).
2. Sarcomas: Arise in bone, muscle, fat, or connective tissues.
3. Leukemias: Cancers of the blood-forming tissues like bone marrow, leading to abnormal blood cells.
4. Lymphomas and Myelomas: Cancers of the immune system (lymphatic system and plasma cells).
5. Central Nervous System Cancers: Begin in the brain or spinal cord.
But most people are terrified of CANCER. And assume CANCER is bad.
Most men die WITH prostate cancer, not from it. So is prostate cancer BAD? Nope.
(Idiot: but there are rare forms of prostate cancer which are fast acting and kill. True. And I’ve now unfriended and blocked you. Ask your therapist to explain threadjacking and whataboutism.)
So using the word cancer when talking about specific disease is … misleading. Example, it leads to lies like: why haven’t we cured cancer?!! We have!! We have completely cured cancer. Well some of the hundred cancers.
I do not have cancer.
I have PTC. It is not cancer. It is a carcinoma. It’s also, literally, the best cancer. Better than prostate cancer.
(Idiot: all cancers are bad. PANIC. Don’t feel bad. I’ve unfriended and blocked you. Print this out and share with your therapist.)
“But I’m worried!!!”
Your fears are your problem.
“But I want to help!!!”
Once again, your problem. When I need help, I ask.
“But helping make ME feel better!!”
Cool. Get a therapist. Print this out. Show this to them.
That will help me.
the History
I had a lump.
Dr ordered an ultrasound.
Which led to catscan.
Which led to a biopsy.
Which led to a combined pet/catscan with radioisotopic sugar injection.
Which included genetic testing.
Which led to a surgeon and another biopsy.
Which led to a thyroidectomy.
Which led to pathology.
Which led to a “diagnosis”.
Which has led to some blood tests, which will be serial, repeated over time, same for ultrasounds. And more scans if indicated.
One question which people have asked is staging.
What stage is it????
Well I don’t have cancer. So why would it be staged?
Also, while the staging numbers are technically the same for most/all cancers … it’s like say men and women are identical because they’re both humans.
TYPICALLY, the stages are all self similar:
- No lymph node involvement.
- Local lymph node involvement.
- Spread to nearby stuff
- Metastasis. It’s everywhere.
There’s also a stage 0 and stage 5 for at least one cancer.
So when someone asks generically “what stage”, they’re using the vernacular and their knowledge of other cancers. What they’re really asking is “how bad is it”
PTC is the best cancer. Even when caught relatively late.
So timeline again
August 20th, 2024 - thyroidectomy - removed thyroid gland, and some surrounding tissue, which after pathology counted, included 16 lymph nodes.
August 28th, 2024 - post op visit. Incision looked awesome, no infection, zero lymph node involvement, discussed next steps, aka see an endocrinologist in 6 weeks.
Oct 7th, 2024 - endocrinologist visit. Holy Crap she was amazing.
Before that visit I had a number of “strange” questions that I realized that I hadn’t thought about in all my research and discussions.
- Who’s my point person?? Short answer: surgeon for scar/surgery related. Endocrinologist for everything else.
- Wait, what? No one’s told me the “stage”. Short answer: LOL PTC gets staged after surgery. While this feels odd to norms, it is not odd for PTC. All the previous scans can indicated (but not proved) that it had not metastasized. And the treatment for all the stages is identical. Thyroidectomy. With some stages requiring follow up stuff.
“But Pete what’s your stage.”
You still keep asking the wrong question.
So stop. “What’s next?” Is much better.
My diagnosis is:
pT3a
pN0
pM0
pM0 - no observed metastasis
pN0 - zero lymph node involvement
pT3a gets much more entertaining.
T is primary tumor size.
2 is less than 4cm, 3 is greater than 4cm. Mine was LOL 4.2
So is it REALLY 3? Hint: ranges are artificial, 3.9 could be MUCH worse than 4.2 mine is in the LOL just over the threshold, but yawn.
“a” is contained, “b” the tumor has grown into the strap muscle.
So the primary was slightly larger but self contained.
So TECHNICALLY 2a, but really more like 1b.
Hint: you’ve disagreed, you’re 100% Wrong. unfriended, blocked, get therapy.
So what’s next??
LOLOL
My Endo was hilarious about this.
I’m in the middle.
There is ZERO guidelines on what to do next. ZERO
There are NO guidelines on if we should or should it do X.
We talked about that a lot and have the obvious plan.
Blood tests to titrate my Synthroid dosage. I previously had hashimotos (hypothyroidism), so I’ve depressingly familiar with this game.
BUT, our target dosage is VERY different than hashimotos.
We want to push me into hyperthyroidism.
TSH, the standard test, is a test of your Thyroid Stimulating Hormone,produced by your pituitary gland.
When it’s a higher number, it’s screaming at your thyroid “make more thyroid hormone!!!”
But I no longer have a thyroid gland.
But I do have residual thyroid tissue (attached to esophagus etc) and potentially have undecided and undetectable thyroid cells spread through my body. Aka tumor cells that went walkabout.
We do not want any of those cells getting TSH and then growing.
So by taking extra replacement hormones, our target is to lower my TSH to ~0.1!!! This is crazy low.
Normal target is 1.0, I feel best when I’m around 0.7 and I feel terrible whenever it’s 2+.
So my Endo did a blood test.
3.4
FUCK
MY
LIFE
I felt shitty for the last 6 weeks. Yup. It wasn’t just post op. It was crazy low thyroid hormone.
So we upped dosage. Retest in 4-6 weeks, repeat until target is hit.
But Pete, what about the cancer???
Shrug
Ultrasound in 6 months.
We’ll also measure another magic hormone which should be ZERO. If it’s not zero, it’s indicative of a tumor.
IF, I wasn’t in the middle. If I had clearly had a more advance stage …
Welcome to my favorite radioisotope!!
The STANDARD treatment for stage 2+ is RAI
iodine-131
The ONLY tissue that uses iodine is the thyroid gland. If you have tumors, iodine-131 will be used by the tumor.
I131 decay with beta decay. Those beta particles the directly destroy the tumor.
It’s magic. It’s hyper-targeted.
(Administered by: injection, liquid or pill. lol)
That’s it.
There is no chemo. None. There is no radiation. None of the normative cancer treatment hell.
I go home.
Im literally radioactive.
For … a couple weeks. LOL
(Half life is 8 days. Half of it has decayed after 8 days. 1/4 left after 16 days. 1/8th left after 24 …)
Oh right.
It makes you gassy. Literally.
The decay product of I131 is. Xenon-131
I literally will fill up with xenon gas.
Ok an insanely tiny amount of it.
BUT
There no protocol for me.
I’m in the middle.
So our GOAL is reduce the likelihood of recurrence while minimizing my lifetime exposure.
So we MIGHT do 50 microcuries. We might not.
That’s it.
Without additional detection, I’m cured.
Barring complications, normative life expectancy. VERY low chance of recurrence.
Notice that I’ve not mentioned oncology or oncologist?
I don’t have one.
Oh right
Hashimotos.
It’s cured.
It’s an autoimmune disease that attacks the thyroid gland. Which is gone.
Old short notes ….
It’s not like any other cancer.
I found out what stage it is and why they didn’t tell me.
The goal is reducing risk of recurrence.
It’s not low and it’s not high.
Stupid
Staging
Fun facts.
I’m still trying to write up all my post visit notes.
FUN FACT
Staging is composed of combining MULTIPLE points of data
The combined results give a “final” dimensionless “stage”
pT - primary tumor size: T1: < 2cm, T2: >2 & <4, T3: >4
pT - sub-variants a: contained to thyroid gland, b: grown into strap muscle
pN - nearby lymph nodes: 0 not, 1 in lymph nodes
pM - metastasis: 0 not, 1 spread
So my combined score is:
pT3a - lol 4.2 cm is just above the fuzzy threshold LOLOLOL
pN - pN0 no spread to lymph nodes
pM - pM0 no metastasis
So TECHNICALLY stage IIa, but right on the fuzzy edge of Ib.
And that’s our current problem.
It’s middle. There’s no protocol for this.
1b and we’d do nothing.
2b or strong 2a, we’d def do isotopes.
Writing this up is entertaining.
Minimizing risk of hitting lifetime limit.
When I asked my doctor about why not just do it, she pointed out she worried about LONG TERM problems.
