Diagnostic Details
my body, in medical terms
This is the cliff notes™ version of what’s going on. More details on each disease can be found in the links should you want to learn more.
Friendly reminder: I am not a doctor. And though I’ve gained a ton of knowledge over the past two years, things may be missing - and the science itself is evolving as we speak. If something seems off, or out of date, just let me know.
Without further ado, I have three distinct conditions:
Neuroendocrine tumor (NET) with a pancreatic primary1 → grade 3, stage 4
This means a neuroendocrine tumor grew in my pancreas, and has now metastasized (in my case to the liver)
This is a slow-growing cancer compared to others
This is a rare cancer - something like 4 in 100,000 adults estimated annually
Ductal carcinoma in situ (DCIS)2 → high grade, stage 0
This is very early stage breast cancer, often called “pre-cancer”
TP53 mutation3 → “Li Fraumeni Syndrome” (though w/ low penetrance in family line)
This means I have a genetic mutation which makes the body less able to fight off cancer once it occurs
It is unclear what significance this plays given family history of low/no cancer
Important note: once NETs metastasize to the liver they are considered incurable.
There are many treatments available to kill / remove / otherwise treat the disease, but it will always come back. As of now there is no cure. I know, fun.
See footnotes on this page for additional details for each of the above conditions.
Go here if you want to learn about the diagnostic journey to date.
And join me in a collective “WTF” if that seems like a lot. It kinda is (but also - could be worse!(?)).
Neuroendocrine Tumor Details
Original tumor removed May 2022
1.4cm // ki-67 3.4% (grade 2, stage 3)
Metastasis lesions to liver found Sept 2023
several lesions, .5 - 1.6 cm avg size // ki-67% 23% (grade 3, stage 4)
All tumors have been well-differentiated – diagnosis is NET not NEC (neuroendocrine carcinoma, or poorly differentiated)
DCIS Details
Calcifications found Nov 2023 in routine mammogram (< 3mm in size)
Biopsy confirmed diagnosis
ductal carcinoma in situ
high nuclear grade.
cribriform and micropapillary patterns.
estrogen and progesterone positive
Follow-up MRI shows no disease spread (cells isolated to ducts)
TP53 Mutation Details
Genetic testing done post-surgery 2022
Mutation correlates to Li-Fraumeni Syndrome, genetic disease that makes it harder for the body to fight cancer cells
Specific mutation is not in database - no info available on prognosis, mostly used to inform preventative screenings (MRIs, etc)