NEC & Mixed Tumor Second Option Program available at Mayo
My husband is under 40, and a recent scan showed that his cancer has progressed to his liver after having his colon removed last year and being diagnosed with stage 3 colorectal cancer. We are not giving up and are seeking second opinions, with the Mayo Clinic being one of the top U.S. centers for NEC & mixed tumors.
I’m having trouble finding information about a Second Opinion program at Mayo. Could someone please confirm if they have a second opinion program and, if so, provide the link to request it?
I would appreciate any help or information no matter how big or small! Thank you!
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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@kelseylenk, yes, you can request a second opinion with Mayo Clinic NET specialists. You can start your request here https://mayocl.in/1mtmR63
In addition to connect with members here in the NET forum, I also invite you to join December's Zoom support group on Dec 4. It is hosted by a Mayo Clinic NETs social worker and Mayo experts are frequest guests. Here's more info:
- Neuroendocrine Tumor Support Group Meeting: Zebras https://connect.mayoclinic.org/event/neuroendocrine-tumor-support-group-meeting-ne-fl-neuroendocrine-cancer-zebras-1-ee5c733d/
Kelsey, was it determined after surgery that your husband has a mixed neuroendocrine-non-neuroendocrine neoplasms (MiNENs), a rare mixed tumorscontaining both neuroendocrine (NE) and non-NE components?
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3 Reactions@colleenyoung – After my husband’s colon removal surgery, three of his tumors were biopsied with the following results: 1) NEC, 2) MiNEN (mixed neuroendocrine and non-neuroendocrine), and 3) Adenocarcinoma. We were informed that the mixed NE & non-NE tumor is quite rare.
We obtained pathology reports from two different healthcare systems (Corewell and University of Michigan Health). We’re not yet certain which carcinoma cells are present in his liver, but we suspect NET due to the aggressive characteristics.
Thank you for the December support group link, especially knowing that Mayo experts are frequent guests.
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5 Reactions@kelseylenk, how does the mixed tumor types affect the treatment options? How are YOU doing?
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1 Reaction@colleenyoung - They’re treating the mixed tumors based on the more aggressive component, so he’s being treated as NEC. His current treatment plan includes Irinotecan, Oxaliplatin, Leucovorin, and Zirabev. We were also able to schedule a second opinion at the Mayo Clinic this month, which is really encouraging. This disease brings a lot of highs and lows… so we’re taking this as a small win. I'm doing okay at the moment, thank you for asking!
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2 Reactions@kelseylenk, if this is your first visit to Mayo Clinic, you might appreciate the information shared by members in the Visiting Mayo Clinic forum here:
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Feel free to ask logistical questions there. It is very encouraging that you will be getting a second opinion at Mayo Clinic. I look forward to hearing your update.