I was first diagnosed with a likely sarcoma in my abdomen in January 2021. After two months of feeling increasingly ill and several telephone consultations with a GP, I got a face to face appointment and the GP told me to immediately go to the local A&E as I looked so terrible and my spleen seemed to be enlarged. I had never heard of a sarcoma and when told, assumed it was better than an enlarged spleen. The A&E doctor quickly put me straight!

Matthew's liposarcoma story

I had never heard of a sarcoma and when told, assumed it was better than an enlarged spleen. The A&E doctor quickly put me straight!

The following two months were awful as investigations proceeded while I remained very ill and covid was rife, at what seemed a very slow speed and with uncertainty about my prognosis other than it was bad. One good thing is that finances were (and remain) not an issue because of my employer’s sick pay scheme. Eventually, I was told by the specialist team I had been referred to that I had a very large dedifferentiated liposarcoma, nothing could be done for me (the sarcoma was too large and I was too ill for surgery or chemotherapy), and I would die within 3 to 6 months.

This prognosis was far worse than I had expected. I was stunned that I had the bad luck to suffer from a rare cancer, for which there is no cure other than surgery in some cases

I was stunned that I had the bad luck to suffer from a rare cancer, for which there is no cure other than surgery in some cases

I guess that being rare, liposarcomas haven’t had the same level of research as the common cancers so treatment options are not as advanced. It was shattering to think that I would die at barely 54 years old having previously enjoyed an active life with no significant health issues. I was also desperately worried about how my death would affect my three children (one of whom has learning disabilities) and how my wife would cope after my death. The overriding thought, however, was disbelief – my diagnosis was what happened to other people, not me. I had become a member of an exclusive club that I did not want to join.


I asked for a second opinion and another hospital decided they could operate to remove the sarcoma and this was done at the end of May 2021. I am told that the sarcoma weighed approx. 12.5kg and the surgeon also removed my spleen, a kidney, and parts of my pancreas and colon. Notwithstanding the success of the surgery, I was told there was a very good chance that the liposarcoma would return.


Recovery was tough but no complications arose and periodic PET scans identified no recurrence until January 2023. The advice is that further surgery is not possible and chemotherapy will buy me time if it reduces the size of the tumour.


I was devastated at the news but feel better able to face up to it than two years ago. This may be because I avoided dying once when it seemed a nailed on certainty so it could happen again! It may though be more to do with having spent the previous 18 months spending time preparing myself practically and emotionally for what lies ahead. Or simply reflects that I currently feel reasonably well. Although I am currently ok with my situation it is a struggle not being able to make plans for anything but the immediate future.


I tried chemotherapy with one drug but that failed to have any benefit so I am now on another and wait to see what, if anything, this achieves. The affect of chemotherapy is not nice but not as bad as I feared. What I did not appreciate though, is that having chemotherapy is not the only battle – the body has to be able to cope with it; twice so far I have had treatment delayed because blood results have not been within required limits. After building up to chemotherapy, it is tough to be told that treatment is delayed.

I decided after my re-diagnosis to focus on three things – fighting the cancer, enjoying life, and preparing for the worst. Part of fighting cancer has been to investigate what clinical trials there are for dedifferentiated liposarcomas – I have every faith in the oncology team caring for me but want to explore this subject for myself and appreciate that the team has to operate within what is possible in the NHS. This is what lead me to RareCan. My selfish hope is that through clinical trials it facilitates, RareCan finds a cure or improved treatment for dedifferentiated liposarcomas in time to help me. More realistically, if the opportunity arises, I would like to try and play a small part in research to these ends to help people diagnosed with dedifferentiated liposarcomas in the future. At a practical level, it would be great to be able to communicate with others in the same boat as me to be able to share experiences and knowledge.

if the opportunity arises, I would like to try and play a small part in research to these ends to help people diagnosed with dedifferentiated liposarcomas in the future.

I have been told by oncologists that having a liposarcoma is simply bad luck and not a result of anything I have done. However, I try to take the positives out of my situation – I have met many amazing people who have cared for me in the NHS, I have been able to prepare myself for what comes to us all, and I am spending time doing things that I enjoy. Long may that continue!