Latest news with #RhabdoidTumour
Yahoo
03-08-2025
- Health
- Yahoo
Man, 30, suffered gym pain, then doctors asked where he'd like to die
A 29-year-old man, Alex Able, was planning a future family with his wife, Elle, when doctors diagnosed him with one of the world's rarest forms of cancer. It came just two years after his wedding in 2021, when Alex, now 30, residing in Kent with Elle, 27, and their two cats, Socks and Sage first noticed shoulder pain in September 2023. As a regular gym-goer, the couple put the pain down to that and didn't think much of it, but it persisted and kept him awake at night. Read more: State Pension age rising for people born in these years in 2026 This led Alex to undergo an MRI scan in November 2023, but it came back clear. While it was a relief, by May 2024, the pain had worsened, leading to a subsequent scan revealing a large tumour on his shoulder and near his spinal cord. Surgeons succeeded in removing 90% of the mass, leaving 10% due to its proximity to Alex's spine. The tumour was sent for testing, and within a fortnight, a shocking diagnosis was delivered, reports The Mirror. "Our world came crashing down around us all," said Alex's mother-in-law, Katie Bleach, 44, from Kent, who has been speaking to the press on behalf of her daughter, Elle, and son-in-law, Alex. Alex was diagnosed with a Rhabdoid tumour - a vicious and extremely rare form of cancer that predominantly strikes young children. This particular type of illness is so uncommon that Katie revealed there are believed to be approximately 11 confirmed cases across Europe, with Alex thought to be the first instance in the UK. "They [doctors] explained that Rhabdoid tumours behave like spider webs, fine strands that cling to whatever they can grab. Alex's was dangerously close to his spinal cord, attached to muscles and nerves controlling his arm movement," the devastated parent revealed. Four weeks after his initial surgery, the tumour had grown back to its original size. He underwent intense radiotherapy, every day for six weeks, in an attempt to shrink the mass. "The radiotherapy caused burns and inflammation to his throat, and he struggled to eat or drink. He was losing weight rapidly, but he kept pushing through," Katie said. He then went on to have chemotherapy, and despite the odds, "started to build himself back up". At a halfway scan, small tumours appeared in his lungs, lower back, and shoulder bone, but as chemo continued by the end of December, the secondary tumours in his lung had halved in size and the patch in his lower back bone had gone. The original tumour on his shoulder "remained stable," and Alex and Elle started making plans for their future, including an exciting move from Kent to Shropshire. Alex finished chemo in March 2025 and celebrated his 30th birthday in the same month after a challenging few months. Heartbreakingly, at the end of April, Alex became unwell and experienced strange sensations in his legs and pain in his back. In just a few days, his health deteriorated, and further results revealed that the tumours in his lungs had returned. In addition, there were new growths in his lower back, which impacted his mobility, and two small lesions were in his brain. Katie shared: "Over the coming weeks, difficult decisions were made; they pulled out of their dream home, Wills were drawn up, conversations about his declining mobility and future care were had." Alex underwent radiotherapy to his brain and lower spine, and intense physiotherapy to help him walk again. Chemo also resumed, but the morning after the first of his third chemo cycle, Alex woke up and couldn't feel his legs. He had sudden paralysis from his chest down, and an MRI revealed that two new growths were found in his spine, bringing the total to seven tumours. Katie shared that before his diagnosis, Alex and Elle, who have been together since 2019 and got engaged just nine months later, "loved travelling, eating out, going on adventures, went out with friends a lot and were film buffs". She added: "Their hopes for the future were aligned; they were desperate to move to Shropshire, and both wanted to live in the countryside. "They wanted a more outdoorsy life and were thinking of starting a family. Their adventures were only just beginning." On her daughter's reliance, Katie added: "She's the strongest. and the most courageous girls I know. She's been an absolute tower of strength to Alex, giving him nothing but love and encouragement with a constant belief that they're going to come through the other end." Due to the rarity of Alex's diagnosis and it not commonly being seen in adults, receiving treatment has been challenging. On July 11, Alex and his family were hit with the gut-wrenching news that his cancer was "now uncontrollable" and that his treatment was being terminated. Devastated Katie shared: "Despite what they might think is best for Alex, they aren't delivering any actual care; all they're doing is managing his symptoms." She continued: "He's comfortable and well looked after, but his condition in effect is only just getting worse." On Wednesday, 30 July, Katie said they had "the worst day in the last 18 months". She shared: "It was a horrific day. Alex was really uncomfortable; he had hardly any sleep the day before, and he woke up saying he was done. We all gathered around him thinking, he looks so ill, this is it, we've run out of time. "I think part of his feeling so low is that he's fully aware that his cancer is potentially progressing while he's been lying there. He was starting to lose hope." After Alex said he had had enough, Katie said he was offered to go home or to a hospice. "They essentially asked him where he would like to die," she added. Refusing to give up, the family have been researching alternative treatment routes outside of the NHS for the last three weeks and set up a GoFundMe page to help raise costs to cover Alex's treatment moving forward, including travel and any additional costs. After weeks of research and rejections, Katie connected with a Professor in Germany who, despite being unable to treat Alex personally, provided details of seven treatment options, all currently used in Germany's leading Rhabdoid tumour institute - the University Medical Centre, Augsburg. You can visit Alex's GoFundMe page here. Professor Robin Jones of the Royal Marsden has since been in contact to say that he is willing to take on Alex's case privately. They are now waiting for further details on his transfer and what the treatment plan will look like for Alex. "Alex is absolutely over the moon, and he's raring to go again. He's always been so determined and said he's going to be the one success case and hopefully a pioneer for children with this awful disease," his mother-in-law said. "We've gone from the darkest place to now, there's some light at the end of the tunnel. We're feeling hopeful again. We will never give up on Alex because he's so determined to live."
7NEWS
16-06-2025
- Health
- 7NEWS
Perth girl diagnosed with rare and aggressive cancer knocked back for treatment overseas
A five-year-old Australian girl with a rare and aggressive cancer has had her hopes of treatment in the US dashed. Lenna Housseini was diagnosed with Malignant Rhabdoid Tumour, or MRT, following the discovery of a tumour at the base of her tongue. It was also slightly noticeable on her neck. MRT is so rare it has not been seen in Australia in decades — but it is aggressive too. In three months, Lenna has gone from being a happy and healthy child to having a life-threatening condition. There is only a 40 per cent chance the little girl from Melville in Perth's southern suburbs will survive and if she pulls through, she will struggle to speak. Her parents had their bags packed last week to take her to the United States for cutting edge treatment. Her Perth doctors had recommended her for proton therapy in Florida. But they were knocked back by the federal government's Medical Overseas Treatment Program, which helps Australians with life-threatening medical conditions access treatment overseas when it is not available in Australia. The reasoning? The cancer is so rare, there is not enough evidence the overseas therapy will be successful. Her parents could try and raise $500,000 to send her privately, but it is too late. It would take weeks to reapply, and Lenna simply does not have that long. 'It's too late to complain, it's too late to do anything, it's too late to even have the regret, because we don't have time to have regret, we have to stay positive,' her father Amin Housseini said. What is proton therapy? The proton therapy offered in the US is precise and can pinpoint a tumour and kill only the cancer cells. It is often used in small children and for cancers in the head, spinal cord, and heart, where there are vital organs. The X-ray radiation we have in Australia is more rudimentary. The larger beam kills the cancer, but also the healthy cells around it. It could save Lenna's life, but there is a risk of lifelong disability. The six-centimetre tumour is at the base of her tongue, meaning parts of her jaw and tongue will be affected by the radiation. That will affect her speech. 'Her jaw may not grow in the future, as naturally,' her mother Mahsa Shafiei said. 'It's going to affect her tongue and all the cells in her tongue, and she might not be able to move it.' Is proton therapy planned for Australia? The rejection from the Medical Overseas Treatment Program is heart-wrenching, but it is a decision the body should never have had to make. In 2017, the federal government announced it would build the $500 million Australian Bragg Centre for proton therapy in Adelaide. There's a custom bunker 16 metres underground made to hold the machine, but it is empty. Last year the Health Department and South Australian government tore up the contract of the American company building the machine. They had spent tens of millions in progress payments, but there were funding disputes and little progress. Ultimately the state and federal government lost confidence in the manufacturer's ability to deliver. Federal Health Minister Mark Butler told 7NEWS his government is still committed to bringing proton therapy to Australia. 'A proton therapy unit is a really important part of the suite of cancer treatment options, particularly for kids but over time for adults, here in Australia,' he said. 'The South Australian Government is doing the lead work to see whether another type of unit from another supplier can be sourced.' But those contract negotiations are starting from scratch and means Australian proton therapy is years, if not decades, away. It is time Lenna does not have. Her family is focused on the basics as she goes through radiation here in Perth. 'Eat, drink and smile' Lenna said her goals are for each day. GoFundMe has been launched to help the family with ongoing costs.
