Hi All,
Hello everyone! My husband aged 67 was diagnosed with Angio Sarcoma on his scalp 30/12/2025. We had never heard of it but the first online search made us both terrified of what we were facing. It had taken nearly 4 months from the first GP contact to that point as he went via Dermatology first. Since then he had a PET scan then finally an appointment with a Head and Neck Plastics consultant at the end of January, who said it was a 'horrible disease' and highly likely to return. They said it should be dealt with quickly and seemed to be saying the op would be within 4 weeks. He was given no treatment plan and told little else other than a discription of what the operation would entail. He had an MRI 2 weeks later and a pre-op appt a week after that, but still no op date. I called and was told that there was a date on the system of 19th March - this will be 11 weeks after diagnosis, and we can see it spreading down his forehead at an alarming rate. We are both very scared and frustrated - worrying that the delay is showing a lack of urgency and understanding of this disease. Is this timeline normal?
Hi mrpip welcome to the group, but sorry you find yourself here. My sarcoma is a different type to your husbands, but like yourself, I would be worrying if I was told 4 weeks but that has turned into 11. Has anyone seen your husband since the pre op appointment? Do you have an assigned nurse you could contact, or the number for the oncologist secretary. I think you need to be voicing your concerns that this is visibly growing. If you cannot contact any one from the hospital medical team then I would suggest you contact your husbands GP who will be able to email them directly.
It may well be that this is the earliest appointment with the surgeon, but I would be fighting to get this earlier. Sometimes it is who can shout the loudest unfortunately, it shouldn’t be like that, but as stretched as our NHS is sometimes we need to address the urgency.
Also please do not google search any more. The internet is full of very bad outdated information, and is full of the worst case scenarios. It will not do either of you any good. Try and get the information you need from here, and sarcoma uk.
I would be getting on the phone tomorrow, please let us know how you get on.
