Low Grade Myofibrolastic Sarcoma

My husband has finally received his diagnosis after waiting since the 10th January for biopsy results. He has a low grade Myofibromastic Sarcoma that is growing in his mouth and has started to invade his upper jaw bone. We have an appointment on Friday 10th March with a Professor in the Department of Maxillofacial Surgery and Stomatology to discuss treatment options. From research it looks like the only way of completely removing this sarcoma is surgery but, as it has invaded his bone, that is going to involve removal of part of the jaw and hard palate followed by reconstruction. He is 75 and I'm not sure he will be able to cope with this. Has anyone else either been through this or been offered an alternative to surgery (chemo or targeted therapy) and, if so what can we expect?

I know this is a rare type of cancer and there isn't a great deal of information. Our son who is a veterinary doctor has been able to expand on what little information there is and translate the medical notes into plain English but it would be good to hear from anyone with first hand experience.

Thanks

  • I'm sorry to hear your husband has been diagnosed with myofibrolastic sarcoma LucindaS.

    This must have been tough news to receive but I'm glad treatment options are available and I hope all goes well at your appointment tomorrow.

    If you have any questions playing on your mind after you've spoken with the Professor or feel it may help to just talk things through with someone, do give our cancer nurses a call on 0808 800 4040. Their phone lines are usually open Monday - Friday between 9a.m - 5p.m and they'll do all they can to help.

    Hopefully some of our members who have contented with this diagnosis will share their experiences and advice with you soon as well but if you'd like to seek out further information and advice, it may be worth getting in touch with Sarcoma UK and/or The Mouth Foundation.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thank you for your reply Steph and for the links. I will have a look.