Hi there,

First time posting on this site.

My partner (now wife) was diagnosed with Pseudo Myxoma Peritonei one year ago.  At that time we were in complete shock but the strange symptoms she had been experiencing - including bloating after eating and some changes of the shape of her belly button all suddenly made sense.  Our case was transferred to xxxxxx and we quickly decided to have the full CRS + HIPEC treatment.  This was a tough time for us but at least we clung on to the hope that the surgery would be successful and we would get our lives back.  The surgery seemed to have been a success, the surgeons were condident that the disease had been fully removed and the PMP was diagnosed as being low grade meaning that post operative chemotherapy would not be required.  She showed great determination to get through the recovery process and eventually restarted walking, then running, cycling, swimming and all the things we loved.  

When she was well enough recovered we had a great year, a few lovely holidays and we finally tied the knot after almost 20 years together.  She also decided to do a triathlon to raise money for the PMP survivors website which had been a great help to us.  The only thing was that some symptoms had started to come back - the bloating and the loss of appetite returned and my wife became so worried she moved forward her 1 year scan.  She was also sure she could feel a new lump in her tummy.  Unfortunately, her blood test results did nothing to reduce our concerns as two of the marker numbers were very elevated.

So we went to the 1 year scan worried and yet still what came next was a huge shock.  We were aware that while most 1 year scans result in nothing more than watch and wait, due to her circumstances we had prepared a "worst case" that a further debulking surgery might be necessary.  However, the news was worse.  We were told that yes the PMP had returned but that it was more aggressive than they had suspected and surgery would not be course they would be following immediately and we were moving from a "treatment" plan onto a "managment" plan and she would have to start a course of chemotherapy.

Has anyone ever heard of anything like this?  When we asked whether her cancer had been misdiagnosed as low grade when it was high grade we were told that no it was low grade but it was behaving in a more aggressive way.  He called it pseudo PMP or pseudo pseudo myxoma peritonei.  To say we are worried and confused would be a massive understatement.  We are devastated and don't really know how to take in this change of circumstances.  Even through the darkest times of the diagnosis last year we were full of hope that we could get through this but we are really struggling to find positives right now.