Low Grade Mucinous Appendiceal Tumour LAMN1

Hi Sue and a very warm welcome to the online community

I'm sorry to read that you've recently been diagnosed with a low grade mucinous appendiceal tumour and it's natural that you have lots of questions.

I don't have the experiences you're looking for but I noticed that your post hadn't had any replies yet. If you type 'low grade mucinous appendiceal tumour' you'll come across a number of previous posts which mentions this. You could have a read through those and respond to any of the more recent ones if you think the poster may be able to help you further.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hello 

Sorry you've found yourself here on the pseudomyxoma peritonei forum. I'm a Basingstoke patient and I was diagnosed in 2010. I distinctly remember the shock of being told I had cancer (originally misdiagnosed as ovarian). The team at Basingstoke are amazing and will put you at your ease. What happens after your diagnosis very much depends on the circumstances under which you were diagnosed and the spread of the disease. What I would suggest is that you really keep on top of what's happening and don't expect an answer tomorrow! It can take time for the local hospital to gather everything together to send to Basingstoke and time for Basingstoke to process it and get back to you.

This is a reasonable quiet group as many have found support through the charity, Pseudomyxoma Survivor. Basingstoke usually look for blood tests, CT scan results and colonoscopy results so if there's anything on that list you haven't had, don't be worried if you are asked for them!!

Your consultant is correct to tell you that it's very rare - a recent study showed that there are between 3 and 4 people each year diagnosed with the condition.

Angela

Tha n you so much Angela.   I’m trying to get my head around this group and have joined fbk page also.  Your right the waiting is the hardest of all.  My first appointment is the first week of jan   I really appreciate you getting in touch x

Hi Sue

Welcome to the group!

I had my diagnosis of LAMN back in May 2020 following a hysterectomy and removal of my appendix.  It is very good news that yours is LAMN1 snd in tact.  
Mine had erupted and the mucus caused a 20cm ovarian tumour. All removed now thankfully but I now have PMP. I am also under Basingstoke who are brilliant! My latest CT scan showed some of the mucus has disappeared and what is left has reduced. Another CT scan in April. 
I know how you feel! When I first heard that I had LAMN I was so shocked! I went to sleep crying and woke up each morning crying, and hard many dark thoughts. But now I am fit and well, and hoping to go back to work soon. I got through it by trying to take one day at a time, and I made myself do one nice thing a day. 
best wishes 

Karen

Hi Sue

I too have just been diagnosed with this and can completely understand how you feel with many questions I’m now finding I have.

I had surgery 4 weeks ago to remove my appendix after numerous grumbling appendix problems. My appendix appeared swollen in a CT scan I had 18 months ago where they were looking for kidney stones. I had a colonoscopy at the end of November which showed my appendix was still swollen, and in the words of my consultant, looked weird!

I was quickly booked in for surgery a week and a half later. My surgery became complicated as my appendix was stuck to part of my small intestine so I had to have that part removed, plus 14 lymph nodes and a big section of my large intestine also. I had a fantastic surgeon and will always be very grateful to him.

My diagnosis came between Christmas and new year and I too have been referred to Basingstoke hospital.

My consultant told me that this is a rare form of cancer, which certainly seems to be the case as the information I have found about it is pretty limited! 

I can’t offer any advice or information to you as I am new to this, like you. However, I wanted you to know that you are not alone xx

Hi Marjie

You ll be in good hand at Basingstoke. What an end to a terrible year! I wish you the very best for your appointment in Basingstoke. 
Stay positive. I try to do at least one nice thing each day which has helped me

xx

Hi Kaz Jax 

Thanks so much for your reply, that’s really reassuring to hear about Basingstoke.

Thats a really good idea about doing something nice each day. I think it’s easy to get so consumed in your thoughts that you forget to focus on the nice things, I know I have at times! Xx

I got my diagnosis in April.  I had a perforated appendix causing tumours on my ovaries.  I had my HIPEC and surgery in September 2020.  You will be in good hands.  I am under The Christie hospital and after 7 days went home.  It is daunting but stay positive and focus on getting home.  I am having my CT scan next month, but feeling good and back at work (well from home).  You will get through it.  Don’t worry about time your team will know what they are doing.  Hope all goes well.