osteopoikilasis

patricia g
patricia g Member Posts: 3

I orginally was told that I had stage 4 lung cancer, a c.t. scan showed that the cancer had spread to my spine, ribs, and all my bones.  I have recently founmd out that I do not have stage 4 but rather stage 3.  What they thought was cancer in mybones, etc. was a rare genetic dease called "osteopoikilasis".  It show up on a scan as it glows and has

uptake just like cancer.  If anyone need information let me know. 

Comments

  • patricia g
    patricia g Member Posts: 3
    It does nothing to you and it

    It does nothing to you and it does not need to be treated.

  • z
    z Member Posts: 1,411 Member
    Patricia

    I am so glad your drs found out that its not stage IV.  It looks like from what you wrote there is no treatment is necessary for the osteopoikilasis.  I hope that you will have treatment to get rid of the stage III cancer.  I wish you well, Lori

  • Carlee
    Carlee Member Posts: 98
    z said:

    Patricia

    I am so glad your drs found out that its not stage IV.  It looks like from what you wrote there is no treatment is necessary for the osteopoikilasis.  I hope that you will have treatment to get rid of the stage III cancer.  I wish you well, Lori

    Very happy that you are not

    Very happy that you are not stage iv.  What treatment are you having?  Good luck to you!