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.

Welcome to the group

Cassie78
Posted by

Hi Everyone

it seems our unique group is growing. A warm welcome to all the newcomers. Wish you didn’t have to be here but as you are, I’m here to talk if you need it. 

I was diagnosed with low grade pmp Feb 2018 after three months of testing. Had crs and hipec in May 2018 at Basingstoke. Spent a month in hospital recovering before home to recuperate. 

Im now 10months on and back at work on reduced hours still (phased return). 

Best wishes to you all

Cassie 

Cassie xx
The brave may not live forever but the cautious do not live at all. 
Claremumof3
Posted by

Hi Cassie, I was diagnosed with pmp at the start of March I’m currently waiting for an appointment for basingstoke.. I was in for day surgery when they doctor found a mucus cyst on my bladder bk in nov.. up until the start of March I heard nothing and then this to say I’m still processing this is an understatement.. how long usually do you wait for an appointment for basingstoke? 

Regards

clare 

Cassie78
Posted by

Hi Clare

Welcome to the group, although it’s not where we’d choose to be, I hope you can find some support here. 

Initially, I had to wait for about two months before being told my proper diagnosis.  I was originally told ovarian cancer and chemo but after a biopsy and many pathology retests I was told it was pmp. Once I had my diagnosis of pmp (early feb2018) I was referred to Basingstoke. It took about about two months to meet Brendan Moran, one of the specialists. 

They had asked for a number of tests/ scans to be sent to them before they gave me an appointment. These included:

1. A colonoscopy 

2. Scans images, I’d had a ct and pet scan whilst they were trying to diagnose me so that was already done

3. Blood test for tumour markers etc, again already done

4. Biopsy slides

They were willing to take me on and offered me the cytoreductive surgery and hipec  I went in on the 13th May and had my operation on the 15th May. 

I did chase my oncologist and called the specialist nurses at Basingstoke to see how they were getting on with my referral just to make sure everything that needed to be sent had got there. 

I got a great deal of support and information from the pseudomyxoma survivor website. If you haven’t found it yet, do have a search for it. 

Hopefully you’ll here from Basingstoke soon. Please keep in touch and let me know if there is anything else I can do to support you.

I wish you the very best. 

Cassie xx

Cassie xx
The brave may not live forever but the cautious do not live at all. 
Claremumof3
Posted by

Hi Cassie, thank you for replying, I’ve received my app through for basingstoke . May I ask how long you where on your first app? I’m just trying to time it to book flight home that   Evening.. 

thanks 

clare xx

Cassie78
Posted by

Hi Clare

I was there about a couple of hours or so with the waiting and the appointment, the blood test and a quick chat with the specialist nurse Sian.

Fingers crossed for a good outcome from your appointment. 

Take care

Cassie

Cassie xx
The brave may not live forever but the cautious do not live at all.