Support awareness and funding

Hi everyone, my name is Sarah. Thank you for taking the time to read my story.

I’m 42 years old and married with a three year old, who requires enhanced care due to having an extremely rare genetic condition, 19 year old twins with additional learning needs and a 25 year old stepdaughter, who gave birth to our beautiful grandson last year.

During my pregnancy, I suffered all the way through with extreme anaemia. The doctor started me on course after course of iron tablets, but my iron levels never came up to normal for me. They just hovered in the lowest acceptable range. This continued after my pregnancy and never got any better. I was constantly feeling cold and extremely tired and just generally unwell but in a very non-specific way. The last four years I would go back-and-forth to the doctors and they would give me more iron tablets and then dismiss things as being hormone related. Eventually last year I started to develop severe pain in my back, hip and groin and was lucky enough to find a GP who listened to me. She did more blood tests and also noticed that my inflammation markers were slightly raised and my haemoglobin levels below normal along with being anaemic. She was concerned by this and how many years it has been going on for so referred me to the rapid diagnostics clinic. They carried out a full body CT scan, which revealed a 7 cm tumour just below my left kidney and a smaller nodule in my left groin. They did a biopsy which came back as inconclusive. So then sent the biopsies to the sarcoma clinic in Singleton in Swansea. Unfortunately, they weren’t able to ascertain anything from them either. My health continued to deteriorate and the pain continued to intensify. Eventually, I was referred to a specialist consultant in the Queen Elizabeth Hospital in Birmingham. They looked at the biopsy results and some of the samples of tumour that were left. But unfortunately there wasn’t enough of the samples left for them to do the necessary tests.

My consultant decided to proceed to remove the tumour anyway. Unfortunately, during my operation they realised that the tumour had also attached itself to my aorta and they had to abandon the operation.

More biopsies were done and they found the tumour to be an extremely rare and nasty, aggressive form of cancer called malignant peripheral nerve sheath tumour, which is a form of retroperitoneal sarcoma . This form of cancer is extremely rare and only makes up one percent of cancers overall. Knowledge and understanding of this tumour is limited to the specialist centres in Birmingham and London.

Another operation was arranged for March which involved two specialist consultants, two vascular surgeons, due to having to have a section of my aorta removed and replaced with an artificial mesh section. Also further scans revealed that the tumour had now completely overtaken my left kidney and was almost at the point of being inoperable due to how quickly it was growing. So two kidney surgeons also had to be involved as my right kidney was attached to the section of a aorta that had to be removed so they had to take that out and re-transplant it further down. I was told the operation was one of the biggest ever attempted in the country because of everything that was involved with it, and there was a 20% chance of me not surviving the operation, and everybody involved didn’t really want to do it, but, it was the only option I had so they were prepared to go ahead with it. And if I didn’t go ahead with the operation due the rate the tumour was growing, I would have approximately six months left to live. This was absolutely devastating and terrifying. I have a family that depend on me very much and the thought of not being here for them was heartbreaking and I couldn’t bare it. The worst part was all of this was completely avoidable, if the healthcare professionals involved since my pregnancy had the understanding and knowledge of this very rare disease.

Thankfully my operation went extremely well and they managed to successfully remove all of my tumour. I had to lose my left kidney. I now have an artificial section of aorta. My other kidney was re-transplanted successfully and though was only working at 7% for awhile is now working at 50% which is the maximum it can reach.

Retroperitoneal sarcoma is a rare cancer that develops in the retroperitoneum, the space behind the abdominal lining. It's a soft tissue sarcoma, which originates in connective tissues like fat, muscle, and nerves. Although retroperitoneal sarcomas are rare they are a significant concern due to their potential for large size and difficulty in complete surgical removal.

Sarcoma UK is national charity that funds vital research, offers support, and campaigns for better treatments for all types of sarcoma. They also aim to increase awareness and education for first line medical professionals so that diagnosis is not missed.

Research, such as that funded by Sarcoma UK, has demonstrated that patients treated at specialist sarcoma centres have significantly better survival outcomes compared to those treated at non-specialist centres. The specialist centres we have in the UK are in Birmingham, where I had my operation, and also in London.

Studies also show that ,specialist sarcoma centres performing high volumes of retroperitoneal surgeries have better survival outcomes than those performing lower volumes. This is why it’s so important to be referred to the specialist centres early on. I am so grateful that they got to me, just in time, but sadly due to the lack of knowledge and awareness many other people aren’t as lucky. I now have the reassurance that I will have annual CT scans to ensure early detection should another tumour develop.

Overall, research in the UK is focused on improving survival and quality of life for patients with retroperitoneal sarcoma through a combination of:

* Ensuring access to specialized sarcoma care.

* Optimizing surgical techniques and high-volume practices.

* Exploring new treatment modalities, including chemotherapy and radiotherapy.

* Developing advanced imaging techniques for treatment planning.

These amazing ladies are running to raise awareness of this awful disease in the hope it helps others in my situation. And ensure that tumours are detected earlier and also to raise money for the vital research and knowledge needed to save more lives.

Please could you donate to support them? Any amount at all would be so gratefully received and it all makes such a huge difference.