Hi there Annie, welcome to the forum but sorry for the reason you find yourself here. I don't know anything about your issue but wanted to let you know that we do read the posts and respond when we can. My cancers are bladder and lung ongoing, and colon that for now, has not recurred. My response to your post will bump you to the first page again, so hopefully, someone will reply who can relate. This is a friendly and caring forum where everyone is dealing with cancer in some way, either we have it ourselves, or caring for a loved one with it. I hope someone who knows something about your issues will respond soon. If you want further information, you can post in the section, "Ask the Nurses" or call them Mon. to Fri. during business hours. They may be able to shed some light on this for you.

Good luck with it and come back on the forum when you can and let us know how you get along with it. By sharing your experience, you can perhaps help someone else who may be having the same issues as you.

Take care.

Lorraine

Hi anniejane,

I hope you don’t mind, Lucy asked me to post something on your thread.  I’m afraid the only information I can find is in the medical literature and, as I’m sure you’ve found, some of these are difficult to read and understand.  Unfortunately this is often the case with rare cancers.  PEComa is rare and I think primary bone PEComa is particularly rare.    

My understanding is that some PEComas are not cancerous (benign) and some are cancerous (malignant).  ‘Perivascular epithelioid’ (PEComa) refers to the type and appearance of the cell affected.  The cells resemble epithelium, the tissue that covers the outside and inside of the body.   ‘Perivascular’ refers to the tissue surrounding blood vessels.  

Most of the literature refer to case studies describing the diagnosis and treatment of just one patient.  These tumours can develop in any part of the body and I’m not sure that reading articles about PEComas in other parts of the body are necessarily going to be relevant.

When someone is diagnosed with a rare cancer, the best source of information is usually their consultant.

I know you would like to hear from other people who have undergone a Massive Proximial Tibial Replacement.  This type of operation may also be carried out for people with a type of cancer called sarcoma.  So it may help to look at the information about rehabilitation following this operation on the Sarcoma UK website here.  Sarcoma UK also have on line support groups and so you may come across people who have had this surgery there. Just click here.

You may be interested to know of a couple of organisations that provide support and information for people with rare cancers.  Look on our website here.

I wish I could give you more information but I hope this helps.

Take care,

Helen

Thanks for the help.