Sacrum cancer

lumani1
lumani1 Member Posts: 3
in Rare and Other Cancers #1

  Hi! MY name is Mike.

   My daughter have a cancer of sacrum area. Doctors suggest resection of infected area (left side). After surgery will be faced different level of unfortunate consequences. Bowel and rectum can become out of control, might be walking problems, possibly paralysing and rest life in wheelchair, - etc.  At January 2018 we are planning partial resection of sacrum bone with S1,S2, S3, S4 nerves and existing tumor. During surgery, according the doctor, might be required resection part of sacral ala, sacroiliac joint and iliac bone. (Afterwards doctors are planning to use titanium construction for connecting those parts).

  I need to ask, - do some one (or relative) here experienced such tipe of surgery an what is your post surgery experience. Can people walk after that? It's important for me to know that my 19 years old daughter, she will move independently and care for her self. 

                 Thanks in advance

  

   

  

Comments

  • ed uk
    ed uk Member Posts: 3
    edited November 2017 #2
    mpnst

    Hi Mike,

                sorry to hear of your daughters condition - very hard thing for anyone to take especially at such a young age.

    I hope everything is working out as best it can for you both. I am in a similar position myself and hold onto the few positives that life being the most important factor and being young and strong your daughter has a few cards in her favour - I wish you both the very best and would be interested in hearing how things progress for you.

    Over here in the uk they look at taking out the effected areas with clean margins but end up entering through the sacrum and sometimes around the front as well. They then harvest bone from the leg being affected as well as stomach muscles to reuse to rebuild the buttocks/back area from what i understand. Its very intense and needs a raft of specialists to perform these procedures over 3 days of surgery and in intensive care - all with similar outcomes as you mentioned above. I am having a new scan in dec 2017 to then help decide route forward.

    I think it will be difficult to find others with similar mpnst in similar locations as i have been trying without much success -- there was a post or two a few years back but i was unsuccessful in finding out how these people faired.

    Has there been a biopsy and histology to confirm if any radio therapy or chemo would be effected either prior or after surgery as i understand some people have had this treatment?

    wishing you both all the best and please feel free to contact me should you wish

    Ed

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