Low-grade appendiceal mucinous neoplasm and cytoreductive surgery?

Posted by livedinrochester @livedinrochester, Mar 6 1:33pm

Has anyone had LAMN T4b and only had cytoreductive surgery? NO HIPEC.

I was diagnosed (not at MAYO) with LAMN June 2024. They thought I had ovarian cancer but the CT made my Doc's suspicious. I ended up with a total hysterectomy, appendix removal, because of the mucin from the appendix that ruptured, spleen removal and then told I had T4b which is scary. 3 (ok) CT's later, I just don't feel right.

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Colleen Young, Connect Director | @colleenyoung | Mar 17 8:18pm

I believe that @isadora2021 is living with stage 4 appendix cancer and may have experiences to share. I think you may have already connected with each other in other discussions.

@livedinrochester, Low-grade appendiceal mucinous neoplasms (LAMNs) are rare tumors of the appendix, often found during treatment for something else. I bet it was (is) scary to hear you have stage T4b.

Cytoreductive surgery (CRS) may be followed by a specialized treatment called hyperthermic intraperitoneal chemotherapy (HIPEC). For LAMN, active surveillance may be the recommended treatment. Was HIPEC not recommended for you?

If you feel like something just isn't right, have you considered getting a second opinion?

isadora2021 | @isadora2021 | Mar 18 12:02am

I’m so sorry you’re going through this. Having a rare cancer makes a tough situation even tougher. I would be getting a second opinion from a reputable cancer hospital.

I’m having trouble understanding your diagnosis despite trying to research around LAMN T4b on line. LAMNS can become cancerous and not limited to producing mucin.

I’m no expert but my understanding is once the tumour is diagnosed as cancerous and has spread outside the appendix (in my case a mucinous adenocarcinoma) surgery alone isn’t enough. You possibly could/should move straight to CRS + HIPEC from what I’m reading on line.

I started off with what was termed debulking surgery which was limited to removing the same organs that you referred to and then doing a biopsy of the tumour. My team also had trouble working out the primary and like you mine was determined as appendix cancer with secondary ovarian cancer.

I did not qualify for HIPEC immediately on my blood tests and scan results so then had 6 months of fortnightly Folfiri and Avastin chemo and immunotherapy before I did qualify for CRS and HIPEC. That cytoreductive surgery was extensive and included a peritonectomy as well as removal of part of my colon.

It sounds to me that you will or should be moving onto the next stages of treatment as I did, and it’s so important to be under an oncologist with expertise in treating appendiceal cancers.

Please do keep us updated 🌸

PS I am coming up to 4 years NED (no evidence of disease) in May and now am surveilled 6 monthly including blood tests and PET-CT scans. Treatment has come so far since Audrey Hepburn passed from appendix cancer