My sarcoma journey – a story of personal transformation

>The Egyptian national had responded well to nine months of chemotherapy and radiotherapy in 2022, so this latest recurrence of the aggressive cancerous lesion known as alveolar rhabdomyosarcoma was a huge blow. "The first week was the hardest"," she says. "When I realised the cancer was back, I couldn’t sleep or eat, I was so anxious. But then I kicked into survival mode and focused on finding the best medical treatment. But it's an ongoing battle. Sometimes I really do feel I'm at war, literally fighting for my life."

Extensive support network

Salma says it was the love and support of her large, close-knit family, along with her deepening faith, that helped get her back on her feet, and ready for round two. And, for this internationally recognised climate researcher, that meant putting her excellent research skills into finding the very best medical care and treatment options on the planet.

"When you know your life is in your hands, it really motivates you", says Salma. "At times I had no idea where my energy was coming from and how I was able to just keep going. It felt like it was coming from somewhere beyond, somewhere much bigger than me."

Salma spent some weeks searching for the right specialist in her native Egypt and across Europe, before a friend of hers – an oncologist based at UCL – recommended Nicholas Kalavrezos, a highly experienced consultant maxillofacial head and neck reconstructive surgeon with a special interest in head and neck sarcomas. As clinical lead of a world-class multidisciplinary team based in London, Mr Kalavrezos was not only ideally qualified to perform the complex surgery Salma needed, but he could also oversee the transition to her ongoing oncology treatment.

Salma’s latest treatment journey meant putting aside a highly inspiring and successful career as a climate scientist, researcher and international speaker. On June 13, 2023, just one week before the regular check-up that would alert her doctors that the disease had returned, Salma made a historic address to the United Nations Security Council on the impact of climate change on peace and security in the Arab region. The following month she flew to London to begin her new treatment programme at one of city’s leading private hospitals, The Harley Street Clinic.

The treatment begins

Salma had two initial meetings with Mr Kalavrezos, where he explained the urgent need for surgery, and fully prepared Salma and her parents for what she was about to undergo. Days later, Salma had a 12-hour surgical procedure to remove the sarcoma and totally reconstruct the right side of her face, with muscular, nerve and vascular tissue from her upper back.

Continuity of care

The complexity of this kind of intervention needed the full support and dedication of the surgical team, the intensive care unit and the highly trained nurses at The Harley Street Clinic. It would also need good communication with Salma’s oncology team at every stage of her treatment.

"Treating people well means offering real communication and consistency of care between clinicians," says Mr Kalavrezos. "That is my ethos. We all work very hard to ensure the outcomes provided by the surgical team are the very best possible for the patient. And that means ensuring the treatment is delivered by multidisciplinary experts who fully collaborate and care for the patient as one team – all the way through the treatment pathway."

With continued support in the days following her surgery from staff across The Harley Street Clinic, Salma says she was helped to regain her confidence and face the world again. "The intensive care team and ward nurses all worked very hard to help get me sitting up, moving and eventually walking up and down the corridor as early as possible. It really helped my early confidence and recovery and meant I felt ready to be discharged quite soon," she says.

Returning patients to mobility soon after surgery is a key predictor of long-term recovery. But Salma says the teams went beyond good medical care and really went out of their way to help her to recover a sense of wellness. "It was also the little things they did that made me feel so cared for, like helping me have my daily shower, and feel refreshed," she says, "or like coming in every day and smiling, engaging me in conversation and encouraging me by saying 'you look great, you're doing great'."

"These little interactions all really matter. So, even though I couldn’t have family staying overnight with me in the hospital, it wasn’t an issue at all. I felt the nurses were there at all times for me, whenever I needed anything."

Making progress

Eight weeks on, Salma is continuing to recover well from the surgery. "I'm feeling good and my consultant is really happy with my progress," she says. "Mr Kalavrezos was fantastic. It was absolutely the right decision to come to London for this surgery. He was specialised not only in the type of tumour I have – a sarcoma – but in facial surgery. I don’t think I would have found someone so uniquely qualified anywhere else." She has decided to extend her stay to receive the next part of her treatment in London.

As a patient of HCA Healthcare UK, Salma is on the UK’s only private pathway to receive advanced proton beam therapy in London in the next few weeks. This highly targeted form of radiotherapy is the new gold standard for rare cancers such as sarcomas.

Incredibly, Salma's newly reconstructed facial features and contours look remarkably similar to her pre-surgery photos. Mr Kalavrezos' expertise in aesthetic facial re-animation has given Salma back her uniqueness, her natural beauty and glow. Yet, as her consultant points out, the reconstruction is about replacing volume, rather than function. While the cheeks can be rebuilt, what can’t be restored so easily are the subtle movements and sensations she had before.

"I can’t blink so well," Salma says, "so my eye waters a lot. Also, some of the symptoms I was left with following my first treatment have grown a little worse: it’s really hard to open the right side of my mouth, and I can’t chew so well on that side as I lost some sensation and motor control, so eating is so much slower. But I'm still working on adapting to the changes, and to how my face feels and moves. And I'm preparing mentally and spiritually for what's next."

Looking ahead

So what has this whole experience meant for Salma? How has she managed to cope with such a huge health challenge? Salma puts it down to two things – her sense of faith and connection with God, and the incredible support of her family, particularly her mum. "A cancer treatment and recovery journey is very transformational,” she says. “There is so much adrenaline because you feel you hold your life in your hands. But I also needed to trust in something bigger than myself, bigger than the treatment, the doctors and even the support of my family. I needed to find a sense of faith that I am capable of passing through this hardship and that I would recover – not just physically but also psychologically."

Salma says she’s looking forward to getting back to being healthy and simply appreciating the small things in life more. "As a cancer patient, with all the uncertainty and the risks, a normal day is an incredible day, an amazing day! Just going to work, having dinner with family… it really makes you appreciate the ordinary things in a bigger way."

"Two years ago, I was 28 and everything was going great. I was just going to work and coming home, like everyone else. Then I got my first cancer diagnosis and my world turned upside down. This experience has made me aware of so much. I’ve seen incredible kindness and support from many people, and I’ve come to feel greater faith in myself and in God. The journey changes you. I’ve come out of it braver, stronger and better prepared to face life."

Sarcoma

Known as the 'lonely cancer'1, sarcomas are very rare with, on average, around 150-200 cases in the UK each year. With a huge number of subtypes, treatments will vary for each patient and usually involve a combination of surgery, chemotherapy and radiotherapy.

Mr Kalavrezos explains: "The treatment for head and neck cancers is very complex and requires a combined treatment approach, especially where the initial treatment hasn’t worked," he says. "In this case, we were able to offer Salma the very best treatment for her condition – a combination of chemotherapy and advanced proton beam therapy, following urgent surgery to remove the tumour and reconstruct the tissue."