When Sara was diagnosed, she was told that her tumour wouldn’t respond to chemotherapy or radiotherapy and doctors couldn’t operate because the mass of the sarcoma was too big.
Following support from the Sarcoma team, she’s now under the care of the Gastrointestinal and Nutrition Team (GIANT) for the gastrointestinal effects of her treatment.
“In 2012, soon after I got married, I developed a urine infection. I found that swallowing even a grain of rice would hurt, and my weight plummeted. I had an ultrasound and they found a mass the size of an apple in the retroperitoneal area – in front of my spine, behind the lung – wrapped around the aorta and the bulk of it was pressing against my stomach. I was referred to the Sarcoma team at The Royal Marsden where I had another scan."
Receiving a diagnosis of lymphangiomatosis
"I remember sitting in the outpatient’s department, with my sister and husband, and they told us that I had a really rare form of sarcoma known as lymphangiomatosis. They basically said there's no cure for it and there's nothing that they can do. I was told they couldn’t operate because it was too big, and that I wouldn’t respond to chemotherapy or radiation."
"We discussed children, and they didn’t think it was a good idea because the hormones can make the mass grow. It seemed very unlikely I would have children, because to be honest nobody thought I would survive. I was completely shocked. My husband, who's usually very composed, was in floods of tears. I came home and it was like - how do we tell our family? Part of it felt like it was happening to somebody else."
Taking a pregnancy test
"A couple of days later, before I started a drug that the team had recommended, I did a pregnancy test. It was positive. I felt such extremes of emotion. It should be the point where you start your life, and now, I didn’t know if I was even going to live. My husband and I decided that we would continue with the pregnancy and the Sarcoma team were so supportive and just amazing. I felt that if I don't make it then my baby might make it and there would be a part of me left in in this world."
"I couldn't celebrate. I just took each day at a time, and by the grace of God, my child was absolutely perfect. As soon as I had my baby, the pain was back. It got to the stage where I was house bound. My husband was too scared to leave me alone at some stages."
Pain management at The Royal Marsden
"I was referred to Doctor Williams at the pain clinic, he’s an anaesthetist and such an asset to The Royal Marsden. I owe my life to him. He referred me for holistic treatment too and I benefited from acupuncture, psychotherapy and a mindfulness course."
"The level of care at The Royal Marsden was simply outstanding, I wasn’t treated as just another patient or another number - I was a human being that was going through the most horrendous time. The nurses felt like family, it felt like having another sister or having another brother just to be by your side, to hold you while you try to cope with such a difficult situation."
"The decision was made in 2016 for me to undergo a celiac plexus block. That’s when the Gastrointestinal and Nutrition Team (GIANT) became involved because the procedure was done endoscopically. There were no stitches or anything like that. The procedure had an amazing impact on me as after that point, I have been literally pain free. I haven't touched a painkiller in over maybe a year."
The Gastrointestinal and Nutrition Team (GIANT)
Sara is looked after by GIANT, which has received funding from The Royal Marsden Cancer Charity. GIANT helps patients manage the significant gastrointestinal consequences of cancer treatment, enabling them to continue with their treatment and improving their quality of life.
"On the one hand it was such a relief not to be in pain anymore, but the side effect was malabsorption. I dropped down to 40kg, as my body just wasn't taking in food. After hearing of my symptoms, Professor Kohoutova (from GIANT) immediately knew what I needed. She put me on injections called Octreotide, Creon and Colesevelam which made a significant difference to my overall health. She is my angel as she was just fantastic. She also referred me to the dietitian Catherine Fleuret who is simply incredible. Through both of their support I was able to put weight back on again."
I can't put into words to describe how amazing the gastroenterologist team are.
"I can't put into words to describe how amazing the gastroenterologist team are. I would not be here without them. They have gone above and beyond for me."
"It’s taken me 10 years to get to this point and to be honest, at the beginning they didn’t think I’d make it to 10 years. I have made it and that is purely because of all the support and the level of care that I've got from The Royal Marsden.”
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