Thank you. This sort of tumour is dealt with by excision of ‘wide margins’ and I think mine will be done by a plastic surgeon specialising in mohs – now don’t ask me what that means exactly, but apparently layers are removed until there are no cancer cells present anymore. Sometimes radiotherapy and/or chemo is needed as well. There are only five specialist sarcoma centres in the UK and I am extremely fortunate to be quite close to one that’s linked to Christies in Manchester.
These tumours are like something from the depths of oceans inasmuch they have tentacle like features but once they are removed then you are cured. They rarely spread either. They do grow back if the margins aren’t wide enough so – give me wide margins I say. I did say to someone the other day that I felt out on a limb and that wasn’t appropriate either, but then I guess you know me by now.
I have had some great support from Macmillan, Sarcoma.org, Rare Cancers and a Facebook group – in this group we are called ‘unicorns’ because someone said dfsp are rarer than a unicorn which I like. It is very scary but you know what, like a lot of you here, by going on this diet I’d faced up to doing something positive about my health and I have felt empowered so far by online communities, members of one or two re: sarcoma I will be meeting in a couple of support groups.
I’ll call back to see you all and let you know how I’m doing. If by some slim chance you ever come across anyone who has had or has got a dfsp let me know as they are so rare a lot of informing and educating is needed.