Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

Low-grade lamn

Alally
Posted by

Hi, I’m after advice & info I had my appendix out 3 weeks ago due to them being enlarged, Had a phone call from hospital last week saying my results are back I have low-grade LAMN, They gave me an appointment for the 11th to see consultant, very worried Thanks 

Flowery
Posted by

Hiya firstly let me say try not to panic too much although I know that’s hard . Low grade LAMN is a slow developing disease and they generally put you on a watch and wait depending on how much it has progressed and your age , , can I ask had your appendix leaked mucin? If it had leaked and mucin was was present in the abdomen then it’s classed as LAMN 2 where sometimes they will recommend surgery , I have just had surgery and hipec for this and I’ve had the all clear , my one peice of advice would be to see an appendix cancer specialist though rather than a general consultant as it’s a quite complex disease . Give me a shout if you have any further questions I am stuck removing at home still recovering so I have lots of free time ha 

Alally
Posted by

Thanks so much for message, They didn’t say if They leaked, the hospital just said low-grade LAMN they said there will be a meeting Monday ( today) for what happens next. I have an appointment next Tuesday with the consultant, but the waiting is so hard, can I ask how long you waited for your op I’ve read some people wait 6 months after they remove the appendix thanks so much for your time 

Flowery
Posted by

LAMN 1 is where the appendix hasn’t ruptured so you could say that classed at stage 1, which is really early , obviously check everything when you go for your appointment and get them to clarify it all for you. I’m sure they would of said if it had leaked , have a look at http://www.pseudomyxomasurvivor.org/ which is really helpful as all the jargon can be confusing and this disease is a confusing thing to understand, also there are Facebook groups just type in appendix cancer group, they are really helpful but just don’t be scared by all the stories as obviously there are other sufferers much further along. I had lamn2 and there really was no rush to get mine sorted out , they happily let me put off my surgery for 5 months as I’m self employed and I was having surgery with hipec which is the chemo wash that they put into the stomach to kill everything off , I had quite a bit of mucin/mucus to remove and they took out some of my large bowel, ovary, gall bladder and omentum , this was to prevent anything developing further in the future , I’m 38. I had already had appendix removed and some intestine removed about 13 months previously when they had spotted there was a problem. Hope this helps x 

Alally
Posted by

Thanks so much, you sound very positive person, did you suffer with any problems whilst waiting for your op for 5 months, thanks for answering my question 

Flowery
Posted by

Well I try ha but I’m sat here at home complaining about anything and everything to all that visit ha no I didn’t have any problems at all apart from I put on a bit of weight that was due to having mucin developing in my abdomen , I am under the Christie which is a really good cancer hospital with specialists in appendix cancer , they were really positive in my outcome due To the stage I was at and how slow this thing develops , now I’ve had the surgery with the hipec I should be ok now in the future fingers crossed x 

Alally
Posted by

Yes fingers crossed for you thanks for answering my question 

Flowery
Posted by

Good luck and don’t panic xx

Alally
Posted by

Hi sorry to bother you again, I was thinking of what you said in your messages that you waited 5 months didn’t you worry that it might spread thanks 

Flowery
Posted by

Yes it is usually around 6 months I think they wait for you to recover from the appendix removal and to see how things have settled , there was no rush for My surgery (LAMN 2) and they let me put it off until 10 months later with no issue . most people are put on watch and wait only with LAMN 1 but each hospital is different and age ect comes into consideration . Make sure you do lots of research on the net and make a list of questions before you see the consultant so you are prepared and understand the jargon. Try not to worry there will be lots of time to get it sorted out if needs be. Let me know if you have any more questions x 

Flowery
Posted by

I’m happy to help don’t worry , I remember how worried I was when I first found out and it really helped talking to others going through that same . The consultant was really reasuring that it as so slow moving that it wasn’t an issue , I had 1 scan and bloods took In those months waiting so they would of made me go in earlier if the scan looked worrying 

Alally
Posted by

Thanks very much for your help my wife feels a little better with what you have said thanks 

Flowery
Posted by

Good luck x

pmpsurvivor
Posted by

Seconding the advice given by . There are two centres in the UK for treatment - one is in Basingstoke and the other is in Manchester. You really want to have your case reviewed by one of these teams before going ahead with any further treatment options. It does sound like you are lucky that it was caught early. Here if you want to ask any questions and have a look at the website recommended.


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
Alally
Posted by

Hi Just had a phone call from the consultant, after there MDT meeting on Monday, she said my appendix had a small amount of mucin around it, by the looks of things it had spread, they tested in side the appendix and they found a very low grade of pmp, so I have to have blood markers and a ct scan done and she has referred me to Christie’s but feel a lot better now thanks for listening