Metastasising Fibrous Histiocytoma

FormerMember
FormerMember
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Hi All,

New to the site.

My son has been diagnosed with Metastasising Fibrous Histiocytoma. We know it is a very rare form of Cancer and he has had major surgery to remove what they can, however they could not remove all of the 'disease'. Currently there is no known treatment or cure. The last pieces of research or any information was on 16 cases (worldwide) in 2013!

I am here to find anyone else who may have been diagnosed with the same or related to anyone with such a diagnosis.

Grateful for any and all information.

Thanks

  • Hi  and welcome to the Online Community although I am so sorry to hear about your son's Metastasising Fibrous Histiocytoma diagnosis. This is such a challenging and stressful time for all the family but I do hope you find the community a safe place to get support and ask your questions.

    I did a quick subject such of the posts on the Community and did not find any mention - so yes it is rare,

    The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services and when it comes to the practical challenges of supporting someone on their cancer journey you may benefit from joining our supportive Carers only and Supporting someone with incurable cancer groups. These are safe places to talk to others who are supporting family and friends and their cancer journey.

    If you'd like to connect in with a group click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

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    Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.

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    All the very best.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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