LAMN T4

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Hi all,

I had my appendix removal bed in May after attending the hospital with what I thought was hernia pain to be told I had severe appendicitis. They removed it the next day. Came home all well. Recovered went on holiday and returned to an appointment letter for Chest CT. Didn’t know who had requested this. Did some digging about and calls to find it was the surgeon who performed the appendectomy. I phoned the secretary who put me through to a specialist nurse and was advised I had LAMN. I was advised that it had been sent out of area for another check and come back as T4???? I have an appointment with another surgeon on Monday where I can ask questions. Not sure what I am asking to be honest. A little lost. I have been told so far I will receive an appointment for colonoscopy and an MRI of abdo. Whilst I was told this I have been advised of a cyst on adrenal gland and ovary. (I don’t have ovary due to hysterectomy 10 years ago. And a nodule on lung but this could be dust on the film???? To say the least it’s been a bit of a mess from the start. Was advised watching for 20 years and CT yearly. Oh and the Tumor was pushing up into the colon. I am totally lost as to what to expect here. Any helpful advice welcome.

Fifers over 1 year ago

Hi Judylee it sounds like you’re still at the investigation stage. So many cases of appendiceal tumours seem to arise following presentation and treatment for other things because it’s such a rare disease.

I’ve only recently been diagnosed with Stage IV Metastatic Goblet Cell Adenocarcinoma of the appendix. I initially presented to ED with acute abdominal pain and a mass was found over my right ovary. It was only after I underwent a full hysterectomy, appendectomy etc that it was confirmed 4 weeks later in Pathology results that it arose from my appendix. There are only two specialist units in the UK that treat this and because it’s so rare (1 or 2 per million in UK annually), it’s not surprising that most surgeries don’t consider it as an outcome.

My advice to you is to trust the process and be patient until the medics are able to investigate fully and consult more widely in order to confirm your diagnosis. They will want to scan surrounding areas and discuss the findings at their local MDT before conulting with a specialist unit so this will take time. Depending on the exact type they’ve found, your T4 may not yet be Stage IV, so wait for confirmation.

I’ve found this forum to be a great source of information. In preparation for your meeting with the consultant have a list of questions ready and bring someone with you.

Judylee over 1 year ago

I think this is where I am struggling to think what to ask.

Judylee over 1 year ago in reply to Fifers

Thanks for your reply, that makes it a little clearer. They have done a local MDT where they came up with the colonoscopy and MRI. I have had CT. Appointment with vascular surgeon? On Monday. The T4 is just the stage of the Tumor after pathology and histology. I don’t think They have had discussions with Manchester or baisingstoke yet. I guess I may be informed after all the tests have been completed

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