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Advise for what my next steps should be based on pathology report?
I might be jumping the gun here but looking for advise on what others may have done for next steps.
Recently had an emergency appendectomy and my appendix was sent off to pathology. My report from that has come back, but no doctor's or nurses have reached out yet. I did call the surgical floor I was on to ask when my follow-up from surgery would be and if I would be getting contacted about my pathology results and was told yes a nurse will be following up in another week with me.
Here is what I see on my test results which is what brought me here. Like I said maybe I am jumping the gun the results have only been in for a couple days. I just want to make sure I advocate for myself if it's needed.
FINAL DIAGNOSIS
A. Appendix, appendectomy: Acute appendicitis with periappendicitis. A well-differentiated neuroendocrine tumor (WHO grade 1), measuring approximately 5 mm in greatest dimension. See comment.
COMMENT
In addition to acute appendicitis, in well-differentiated neuroendocrine tumor is fund in the tip of the appendix.
Immunostains are performed. The tumor cells are positive for synaptophysin (A1). A Ki-67 immunostain shows low proliferative index (see detail below).
Digital imaging was used in the diagnostic assessment of this case.
ANCILLARY STUDIES
Appendix, appendectomy: block A1
SPECIAL PROCEDURE REPORT
Biomarker(s) for:
Neuroendocrine tumor or carcinoma
Result(s):
Ki-67 labeling index:
Labeling Index: 2 % (<3%)
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@bac2255: I understand your frustration waiting for a thorough explanation of the Appendix pathology report of Neuroendocrine tumor discovery. It seems your case is well-differentiated, low grade with KI67 about 2%. NET tumors are generally very slow growing, the surgery removed the tumor that may have caught it before any metastases occurred.
You are now a member of the NET family, of which will assist you with terminology, treatments available and hold your hand through the uncertainties of our disease.
After you receive results of a 2nd Opinion of your diagnosis by a NET Pathologist, you will probably have several more scans and blood/urine lab tests done - then ask for a consultation of a NET Medical Oncologist with speciality in Gastroenterology. Having this specialist on your team is primarily important to be able to advise future treatment and watched closely for progression of this cancer.
I encourage you to learn all you can about your cancer and have all your questions posed to either this forum or the NET Medical Oncologist. Regular Oncologists just don’t have the expertise to guide you to your goal of controlling this rare cancer.
You are not alone… we are here for you! I hope this helps you today.
dbamos1945
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6 ReactionsBAC2255 @bridgetann2255,
I want to respond even though I do not have an answer to your specific questions about your pathology report.
I remember when I got the news and did not know what to think and where to begin. The waiting for answers felt to me, to be worse than the outcome. Remembering those days, I wanted to touch base with you for we are not alone and can find people to accompany us along the way.
What I have come to find is that I found people through the Neuroendocrine Cancer Foundation whose Peer to Peer Progran https://www.ncf.net/netconnect helped me understand the meanings and process of dealing with Pathology reports and helping me decide on the best NET Specialist and treatment for me .
I also appreciated their
Wellness Coaching. https://www.ncf.net/healthcoaching
The resource page for Newly Diagnosed may also be helpful https://www.ncf.net/newlydiagnosed
The Mayo Clinic Monthly NET Group is another solid people and resources.
What I can say about your report is to my amateur mind that a well differentiated tumor indicates that it is easier to find treatment and the "low proliferative index " is a positive sign meaning slow growing as is the Ki-67 score being low. Sounds like a slow growing tumor which will give you time to find the people and best NET specialist team you want to accompany you and effectively answer your questions.
I am deeply thinking of you tonight . The wide NET community, seems to me . to be made up of rather special accompanying advocates .
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6 Reactions@dbamos1945 Thank you for reaching out. Your response backed up some of what I was thinking. It has given me encouragement on my thoughts. I am very glad to have come across this group.
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4 Reactions@maeve115 I greatly appreciate your comments. I definitely needed the reassurance so I am not feeling alone, like you stated the waiting is almost worse! I am glad you shared those links I think they will fill in a lot of the questions I have in the back of my mind.
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4 Reactions@bridgetann2255
Thank you for responding . I have been thinking of you... LOTs.
More information. I also appreciate this online Support Group which starts a new free sixteen week session on October 1st for Neuroendocrine Patients. It is moderated by Rachel Odo CSW who works as a clinical social worker for there online program at CancerCare. Prior to this work she was a valued member of the Memorial Sloan-Kettering Cancer Center in NYC. She is well versed in all things NETs.
https://www.cancercare.org/services/support_groups/carcinoid-and-neuroendocrine-tumor-patient-support-group
The sessions run for sixteen weeks with a six week break and one can sign up again for another.
And in case you missed this : The Mayo Clinic Registration page for the once a month Neuroendocrine Tumor Support Group Meeting: Zebras ..
I personally appreciate their usage of the Zebra explanation and moniker..
https://connect.mayoclinic.org/event/neuroendocrine-tumor-support-group-meeting-zebras-dd238f6e/
Thu, Oct 1, 2026
5:30pm to 6:30pm