Hello, My husband was diagnosed with Angio Sarcoma on his scalp at the end of December 2025. It had taken 4 months to get him to this point as he was initially send down the dermatology route and they didn't know what it was on sight. When we found out what type of cancer it was we researched it and found that it was a rare and aggressive form of cancer that is highly likely to spread. We assumed that things would mover very quickly, and at first it did - in January he had a PET scan and appointment with a head and neck plastics consultant. At the appointment we were told that the PET scan hadn't shown anything else of concern (great!) and the conversation between the attending junior (?) doctor and consultant seemed to be saying that an operation to remove it was urgent and should be done within 4 weeks and that an MRI had to be done first. The MRI was a week later, followed by a pre-op. We prepared for an appointment to come through at any time, expecting it to happen by end Feb, but nothing arrived by the week before so I called. I only had a number for dermatology so called them - they looked and said no date for an op on the system, but that it was marked 'urgent' and so to expect one any time and that it had to be done within 4 weeks of the appointment (28/01) so definitely by the end of the following week. In the meantime we can actually see the tumours forming and spreading down my husbands forehead. Still nothing by the Friday, so I found the Head & Neck number online and called them. Told that the consultant and his secretary were on holiday until the Tues of the next week but that they could see a date of 19th March for the operation - another month away! Everything we have read about this form of cancer states that it must be dealt with swiftly due to it's aggressive nature so I rang the consultant and spoke to his secretary when they returned from leave - they confirmed the date and we told them that we had expected it within 4 weeks and about the fact that we can actually see it spreading. She said she would pass that on to the consultant. We have still heard nothing - not even an official confirmation of the op date. If he does have to wait until 19/03 it will have been 11 weeks since diagnosis and over 4 weeks from the pre-op. There appears to be no sense of urgency and even less information. We are both having sleep problems - I wake up at 4am thinking about it and feeling angry and upset. I even sent an email to our PALS at about 5am yesterday morning, hoping they can give us some info! Of course at the base of all this is the fear that a) this delay could see the disease spreading to another organ or site within his body; b) the further down his face it travels will mean that he is likely to be more disfigured by the operation; and c) that ultimately the delay will mean he is more likely to die. Sorry for the rant!
Hi mrpip
I am Steve, another of the community champions and my experience of cancer is via my wife who has Leiomyosarcoma.
Janice's cancer was diagnosed late though fortunatly the primary had been removed when she had an emergency hysterectomy - a long story in its own right. She ended up having two different types of chemotherapy and fortunatly the second managed to render her cancer stable. She has been in that happy state for over 10 years now and we are down to an annual check up with the oncology team that mostly just involves a chest x-ray.
Totally get your worry about a lack of communication from the hospital. We have used PALS in the past and I have found them quite helpful. Indeed one time I was talking to my GP about my own health and he said he would write to the hospital but felt they would ignore him the same as they seemed to be ignoring me - PALS to the rescue for that.
As for ranting on here - absolutly no worries - though sometimes for a specially good rant we have a special space The Room just remember to slam the door on the way out!
Fingers crossed you hear something soon.
<<hugs>>
Steve
