Hello, I live in Ontario Canada. I had emergency surgery on Aug. 8th this year. They removed my perforated appendix....

Let me address your concerns systematically.

Your Unique Situation: Mixed Appendiceal Cancer (NET + LAMN)

You have a rare and complex diagnosis: both neuroendocrine tumor (NET) and low-grade appendiceal mucinous neoplasm (LAMN) arising from your appendix. This combination is uncommon, which is why you're getting different opinions. Each surgeon may be focusing on the cancer type they're most familiar with:

• The colon surgeon may be treating this like colon cancer (standard approach: right hemicolectomy)
• The cancer clinic surgeon may be recognizing the indolent (slow-growing) nature of some appendiceal cancers

The challenge: Your situation requires expertise in BOTH neuroendocrine tumors AND appendiceal mucinous neoplasms - a very specialized area.

1) Should You Seek a Specialist Opinion?

YES - This is strongly recommended. Here's why:

According to the National Comprehensive Cancer Network (NCCN) guidelines for neuroendocrine tumors, appendiceal NETs with mixed histology (like yours) require specialized evaluation. The American Cancer Society also emphasizes that appendiceal cancers, particularly mixed types, benefit from management at centers with specific expertise in these rare tumors.

Why a specialist matters for your case:

1. Mixed histology is complex: The NET component and LAMN component may behave differently and require different surveillance or treatment strategies

2. Surgical decision depends on specific factors:

   • Size of the original tumor
   • Depth of invasion into the appendix wall
   • Whether margins were clear in your emergency surgery
   • Presence of lymphovascular invasion
   • Ki-67 proliferation index (for the NET component)
   • Presence of any mucin or pseudomyxoma peritonei (for the LAMN component)

3. Treatment isn't one-size-fits-all: Some appendiceal NETs need right hemicolectomy, others don't. Some LAMNs need aggressive cytoreductive surgery, others can be watched.

2) Mount Sinai Toronto - What We Know

You're correct that Mount Sinai Hospital in Toronto has expertise in appendiceal cancers. While I don't have specific patient experiences from Mount Sinai in my knowledge base, I can tell you what to look for:

Questions to ask when seeking a specialist consultation:

1. About their experience:

   • "How many patients with mixed appendiceal NET/LAMN have you treated?"
   • "What is your typical approach to this combination?"

2. About your specific case:

   • "Based on my pathology, do I need a right hemicolectomy now, or is surveillance appropriate?"
   • "What are the risks of waiting versus operating?"
   • "Were my margins clear from the emergency surgery?"
   • "Is there any evidence of peritoneal disease or mucin?"

3. About monitoring:

   • "What specific tests should I have and how often?" (CT, MRI, tumor markers like chromogranin A, CEA, CA 19-9)
   • "What would trigger a change from surveillance to surgery?"

4. About the NET component:

   • "What grade is my NET?" (Grade 1, 2, or 3)
   • "Do I need octreotide scans (Ga-68 DOTATATE PET) for staging?"

5. About the LAMN component:

   • "Is there any mucin present in my abdomen?"
   • "What's the risk of pseudomyxoma peritonei developing?"

3) The "Watch and Wait" vs. "Surgery Now" Decision

This is the critical question, and here's what the medical literature tells us:

For the NET component (per NCCN Guidelines):

• NETs < 1 cm with clear margins: appendectomy alone is usually sufficient
• NETs 1-2 cm: right hemicolectomy is often recommended
• NETs > 2 cm: right hemicolectomy is standard
• Additional factors that favor surgery: positive margins, lymphovascular invasion, high-grade features, involvement of the mesoappendix

For the LAMN component (per American Cancer Society):

• If completely removed with clear margins and no mucin: surveillance may be appropriate
• If mucin present or margins unclear: more aggressive approach may be needed
• Risk of developing pseudomyxoma peritonei (mucin accumulation in abdomen) requires long-term monitoring

Your situation requires knowing:

• The size of your tumors
• The grade of your NET
• Whether margins were clear
• Whether there's any mucin in your abdomen
• The depth of invasion into the appendix wall

4) My Recommendation: Next Steps

1. Request your complete pathology report from the emergency surgery. You need to know:

• Tumor size(s)
• Margins status
• Grade of NET (Ki-67 index)
• Depth of invasion
• Lymphovascular invasion (present or absent)
• Presence of mucin

2. Seek a second opinion from an appendiceal cancer specialist - Mount Sinai Toronto or another center with expertise in both NETs and appendiceal mucinous neoplasms. Other Canadian centers with expertise include:

• Princess Margaret Cancer Centre (Toronto)
• BC Cancer (Vancouver)

3. Before any decision, ensure you have:

• Baseline tumor markers (Chromogranin A, CEA, CA 19-9)
• Consider Ga-68 DOTATATE PET scan (for NET staging)
• High-quality CT of chest/abdomen/pelvis

4. Don't rush, but don't delay indefinitely:

• A few weeks to get a specialist opinion won't change your outcome
• But you do want this sorted within 1-2 months of your diagnosis

What the Research Shows About Patient Experiences

While I don't have specific Mount Sinai patient stories, I can share that patients with appendiceal cancers who sought specialist care consistently report:

• More thorough evaluation of their specific pathology
• More nuanced treatment recommendations
• Better long-term surveillance plans
• Greater confidence in their treatment decisions

Bottom Line

You are absolutely right to question whether "watch and wait" is appropriate without a specialist evaluation. Your instinct to seek expertise is sound. The combination of NET + LAMN is uncommon enough that it warrants evaluation by someone who regularly treats appendiceal cancers.

This doesn't mean the cancer clinic surgeon is wrong - surveillance may indeed be appropriate for your specific case - but you deserve to have that recommendation come from someone with deep expertise in your rare cancer type, who can review all the pathology details and imaging.

Questions to ask your current surgeons while arranging specialist consultation:

1. "Can you share my complete pathology report with me?"
2. "Would you support me getting a second opinion from an appendiceal cancer specialist?"
3. "If I pursue a specialist consultation, can you coordinate my care with them?"
4. "What is the timeframe in which a decision needs to be made?"

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.

I hope this helps clarify your options. Please feel free to ask follow-up questions about any aspect of your diagnosis or the decision-making process. You're doing exactly the right thing by educating yourself and advocating for specialized care.