Hi everyone. Just looking to see if anyone has experience of EDS (Elhers Danlos Syndrome) or hypermobility and undergoing treatment for Oesophageal cancer? Mum was diagnosed with cancer back in March, we were told her treatment would be chemo/radiotherapy, then surgery then perhaps immunotherapy however we met the Oncologist last week and were speaking with one of his registrars when he came in the room and said "I've just had another look at your scans and there is something a bit odd, on your PET scan the tumour sits one side of the spine and on the CT scan it sits the other, your oesophagus moves?", I said to him, could this be a result of EDS and he said yes, so I said well I have it but we didn't know where it came from so it must be Mum.
EDS means you have faulty connective tissue so basically everything is very stretchy, when people do party tricks with their body, its often because they have hypermobility or EDS. The problem is though is that it doesn't just affect your joints, it can affect your organs too, my stomach hangs into my pelvis on standing and my bowel has prolapsed, my diaphragm sits lower than it should etc.. all causing a myriad of symptoms and issues. Its usually inherited but as Mum wasn't symptomatic and my dad passed away in 2021 we weren't sure where it came from. It seems Mum also has it as her oesophagus is lax and moves.
They've now said that this poses a problem with doing radiotherapy as obviously they tattoo you up and you have it in the same spot each time, well of course if Mums moves around they cant guarantee its location so they're now saying they might have to do chemo, surgery then chemo but they are going to do a bit more research. They're also concerned about using radiotherapy on someone with a connective tissue disorder. I've been doing a lot of reading and I know of people with EDS who have had radiotherapy with things like breast cancer and it was fine so I'm not too concerned about that side of things but the movement does pose a problem. I'm also scared that the surgeons when they find out might not be so keen to operate as you generally have slower and sometimes more complicated healing with EDS.
I'm just wondering if anyone on here has EDS or hypermobility and still underwent treatment? Mum fractured her hip back in 2021 (after tripping over) and had to have a pin put in her hip and a plate in her leg, it was quite a major surgery but she recovered well without complications so that gives me some reassurance that she'd cope with the cancer surgery.
I just feel we're back in that place of not knowing what is happening, they are starting her on chemotherapy this Friday to at least get things moving as she's been getting more pain now. We were told originally that treatment would be curative and they are still saying that's the aim but with it all up in the air it all feels so uncertain again.
