LAMN New to the group

Oh, Meant to say apparently it's a "LAMN with serosal acellular mucin (T4 Nx Mx) Proximal margin of the appendix showed serrated epithelium"

Anybody able to translate that for me?

Hi ....I am a Christie's patient. I was diagnosed in March 22.  If you haven't already found these two FB groups, I would encourage you to join.....lots of people in similar situations ....lots of experience and support.

Tracy

Thank you Tracy. I'll give that a go

Hi,

I’m terrified as I am waiting on surgery for my LAMN.

Single parent with a 14&1/2 year old son - he knows I need my appendix out.

4th Oct I had a urology ultrasound during which I mentioned I had a dull ache in my side; nurse requested a CT scan.

9th Oct CT scan identified an abnormal “fluid filled appendix”.

No further information forthcoming.

28th Oct I had a phone message to say I had an appointment to see a surgeon, reason unidentified.

30th Oct I had a urodynamics check. 

4th Nov informed by surgeon an appendectomy was needed and to wait for a pre-op assessment. Was given basic info about what may be found during operation however told that most LAMN go un-noticed and they are quite rare.

6th Nov, online pre-op questionnaire complete.

Waiting, terrified.

Positive notes:

Bladder is larger than usual however looks healthy.

LAMN observed incidentally.

NHS poo test result came back 8th Nov clear!

There does not appear to be much info I can read just now to put my mind at ease or to read and plan what to do next as I’m waiting to find out more about this LAMN.

Every twinge, burp, wind, usual bodily ache is now a disaster in my worried mind.

Hi I am Christie Hospital patient. 

I have Pseudomyxoma Peritonei diagnosed March 2022 and surgery in July 2022.

Where are you being treated?  Have you been referred to the Christie Hospital  in Manchester or the Basingstoke Hospital?

Tracy

Hi Tracey,

so happy to hear from you 

NHS Scotland, Glasgow Royal Infirmary.

The two centres of excellent for "our" cancer are The Christie in Manchester and Basingstoke in Hampshire so you should push for a referral to either of them as they are the experts in this field.

Would also encourage you to join the following two private FB groups as there are lots of people on these sites with LOTS of experience and knowledge about LAMN etc

Do we know if there is a centre of excellence in Scotland? I’m not sure if I would be referred to an English hospital although I will certainly ask.

thanks for the info about the FB groups

I know there are people in the FB groups from Scotland as I am in contact with them....one came from Shetland to the Christie and the other person from Glasgow went to Basingstoke. These are the only two specialist centres in the UK.

Fantastic. I’m going to ask for this too. I hope you don’t mind, can I mention on the FB groups that you know or would you be happy to introduce me to the two Scottish folk?