APPENDICURE

Here’s What You Need to Know (Without the Overwhelm)

I’ve heard from a lot of people that do not understand their diagnosis. Don’t worry…this is normal. When my husband was diagnosed with Poorly Differentiated Goblet Cell Adenocarcinoma – G2-3, we literally had no idea what they were talking about. The word “Goblet” sounded like a death sentence — like some evil, drooling creature with razor-sharp teeth and long fur, running loose inside my husband’s body. That’s honestly what I took away from my first meeting with an appendix cancer specialist. And it didn’t improve with the second, third, or fourth meeting. That time was terrifying. We were trying to decide on a Surgeon. My anxiety was through the roof, and my attention span was almost nonexistent.

As noted in t photo above, the pathologist’s Comment is as follows:  “Per report, metastatic carcinoma involved one of a total of twenty-one lymph nodes (1/21); two tumor deposits were present; and all margins were free of tumor.”

If you’ve just been told you have goblet cell adenocarcinoma, take a breath; there is a lot to learn and it can feel overwhelming – especially when you are first diagnosed (this goes for caregivers too – I can swear to that).

This is a rare diagnosis, and most people are given very little context at first. We were reassured by our GI doctor (his was found accidentally during a colonoscopy) that “although this is cancer, it’s not colon cancer,” and that it would be a quick outpatient surgery ….a “small snip“….and that once we were home that same day, my husband would be cancer free.

You may hear words like grade, type, or aggressive before anyone explains what those actually mean. This post is here to help clarify some of this.

First: What Is Goblet Cell Adenocarcinoma?

Goblet cell adenocarcinoma is a rare cancer of the appendix.

It is NOT:

• Not LAMN
• Not HAMN
• Not a neuroendocrine tumor
• Not a “carcinoid” (that term is outdated; hearing this term would be a red flag for me…just my two cents ;-))

It is a true adenocarcinoma, meaning it’s treated as cancer — but not all goblet cell cancers behave the same way.

That’s where types (grades) come in.

Why Doctors Talk About “Types” or “Grades”

Goblet cell cancer exists on a spectrum:

• Some forms grow more slowly
• Others behave more aggressively

The grade tells your care team how intense treatment and follow-up should be.

Below is a simple breakdown — no pathology degree required.

Type 1: Typical (Low-Grade) Goblet Cell Adenocarcinoma

(Grade 1)

What this means

• Cancer cells still look fairly organized
• Clear goblet cell features are present
• This is the least aggressive form of goblet cell cancer

What patients should know

• It is still cancer
• It is still treated seriously
• But it generally grows more slowly than other goblet cell types

Why this matters

• Treatment may be less aggressive than higher grades
• Outcomes are often better than with other goblet cell types

Type 2: Adenocarcinoma ex Goblet Cell

(Grade 2)

What this means

• A mix of goblet cell cancer and more typical adenocarcinoma
• Cells are less organized
• This represents a middle category

What patients should know

• More aggressive than Type 1
• Higher risk of spread than low-grade goblet cell
• Often treated more like colon cancer

Important reassurance

• This is not poorly differentiated
• It is moderately differentiated, meaning there is still some structure

Type 3: Poorly Differentiated Goblet Cell Adenocarcinoma

(Grade 3)

What this means

• Cancer cells look very abnormal
• Loss of goblet cell structure
• This is the most aggressive form

What patients should know

• Higher risk of spread and recurrence
• Chemotherapy is more commonly recommended
• Close follow-up is critical

Please Read This Carefully 💛

Two people can both be told: “You have goblet cell adenocarcinoma”

…and have very different treatment plans and outlooks depending on:

• The grade
• The stage
• Whether the pathology was reviewed by an appendix-experienced center

This is why second opinions matter so much with rare appendix cancers.

If You Are Newly Diagnosed, Focus on These Next Steps

You do not need to understand everything today.

Right now, your job is to:

1. Get a clear pathology classification
2. Ask whether your case has been reviewed by a pathologist is an appendix specialist
3. Avoid comparing your diagnosis to others online without context

Information is power, but don’t do what I did….many insane rabbit holes I went down which made my anxiety even worse. That helped no one 🙂

A Final Word

You are newly diagnosed with a VERY rare cancer that most doctors will never see.

You must:

• Ask questions; write down questions before you go – write down the answers or ask the doctor if it’s okay if you record the conversation (most doctors are fine with that)
• Ask for people’s time.; even strangers
• Ask for clarity; tell them to slow down if you need to
• Ask for expertise

PS: You really should DEMAND these things….

A Final Final Word (sorry thought I was done)

Write down these things about your diagnosis so that you can quickly tell any medical professional your exact diagnosis:

The full pathology diagnosis, not a shortened version.

• List
  • Good Example: Goblet cell adenocarcinoma of the appendix, Grade 2 (adenocarcinoma ex goblet cell)
  • Not Enough Info Example: :Appendix cancer, Goblet cell

This distinction matters more than most patients realize.

• Grade and Differentiation – Doctors need to know how aggressive the cancer cells look.
  • Grade (1, 2, or 3)
  • Differentiation (well, moderately, poorly if stated)
    If you don’t know this yet, write: Grade not yet confirmed
    That’s okay, but ask your doctor.…

Stage

If staging has been done, write:

• AJCC stage (I–IV)
• Or clinical vs pathologic stage

If not yet staged: “Staging pending”

Never guess — “pending” is a valid answer.

Surgery Details (If Any)

• Date of surgery
• Type of surgery:
  • Appendectomy
  • Right hemicolectomy
  • CRS/HIPEC
• Whether lymph nodes were removed
• Number of lymph nodes positive (if known)

Pathology Highlights

These are big decision drivers:

Write down whether pathology mentions:

• Lymphovascular invasion – Yes or No (“N refers to the Lymph Nodes and whether the cancer has spread to them and if there is spread, how many lymph nodes are involved)
• Perineural invasion – Yes or No
• Margin status – Clear or Involved
• Perforation or rupture
• Tumor size (also known as T-Stage)

If you don’t have this yet, that’s fine, but make sure you add it later.

Spread or Metastasis

M refers to Metastasis – whether the cancer has spread and if so, where it spread.

• Where cancer has spread (if anywhere)
• Peritoneum
• Lymph nodes
• Ovaries (for women)
• Other organs

If no spread was found: No metastasis identified to date

Molecular / Biomarker Testing (If Done)

This matters increasingly for treatment options. It’s newer technology, but it’s another tool in your toolbelt; ctDNA (circulating tumor DNA) blood test has been proven to detect a recurrence earlier than traditional blood tests and scans, although it’s not 100%. My husband has his blood drawn every 3 months. They come to our home. You can click HERE to learn more about the test we use called Signatera.

Circulating tumor DNA (ctDNA) tests generally work better for goblet cell (GCA) than LAMN. This is due to differences in how these two types of tumors shed DNA into the bloodstream.

Mucin is less likely to shed a significant about of DNA into the bloodstream

Write down:

• MSI status
• MMR status
• KRAS / NRAS / BRAF (if tested)
• Any tumor sequencing done

If NOT done:

Molecular testing not yet performed, DEMAND it. After my husband’s surgery I heard about ctDNA tests and approached our surgeon about having this done. We were told it was not proven a reliable test yet. I insisted on it and it was done….and it’s a good thing I did because the hospital’s path lab threw away our tissue 6 weeks after surgery. I’ve since found out that most institutions keep tissue for at least one year, but apparently not all.

Your Friend,

Demanda “AKA Amanda Moore”