giant central cell granuloma (Gccg)

kyleolsen
kyleolsen Member Posts: 1
in Head and Neck Cancer #1

Before I start, to all with this burden, my blessings to you and your families. 

My 21 yr old daughter has GCCG.  Was prescribed by oncologist at seattle cancer  treatment center for DENOSUMAB treatment. Has been taking for 8 months. Tumor has ceased growing, bone growth evident in jaw, a miracle. But my daughter believes that only way away from tumor is surgery (jaw removal replaced with fibula) to  right mandible. What we are searching for is an absolute truthful analysis of this surgery by those that have experienced it  If they would have had another less invasive option would they have taken it and complications involved with surgery. Again my heart goes out to all that carry this burden.  Signed, a father at his wits end. 

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Welcome to the H&N Group

    Welcome to the group, but also sorry you need to be here. Mine was laryngeal cancer in my larynx SCC stage 3. I don't know that much about his type of cancer or that treatment but it seams to get good results. You can let your daughter know that surgery is not the only way to treat this, radiation with chemo is often used to shrink and kill the tumor. Every one is not treated with the exact way because we are all different. For me my only way was surgery do to my lungs. If my lungs would have not been damaged, they would have gone with radiation and chemo, and it might have saved my larynx and I kept my vocial cords. Just not in the cards for me.  Surgery is usually the last resort.

    There are others that can explain it better as they wen't through this. Will keep your family in my thoughts and prayers.

    Bill

  • corleone
    corleone Member Posts: 312 Member
    #3
    Hi

    First of all, CGCG is a benign condition of the jaws, so I am not sure you will get a good feedback on this forum, where all of us had a very different kind of treatment for malignant conditions (radiation and/or chemo, and/or surgery). Also take whatever I am saying with a grain of salt, I have no experience with this condition whatsoever, I had to “google” to find this.

    Agreed that surgical curettage is the treatment of choice for CGCG. For aggressive lesions, en bloc resection is the treatment of choice.

    The problem is that even though radical resection is effective modality for aggressive lesions, it leads to functional disturbances.

    It seems she already received top notch treatment with Denosumab, targeted therapy which profoundly reduce bone turnover for a sustained period. Another alternative (similar mechanism of action) is osteoprotegerin, but I am not in a position to tell which one is more effective or with less side effects.

    There are also other “classical” medical treatments (intralesional corticosteroids, calcitonin injections, and interferon-alpha therapy).

     

    I would say continue the medication that showed evident response, and if – at some point - will no longer be effective, then go with the surgery. But the best is just go with whatever the treating physician recommends, provided they are experienced with this type of disease.

  • Barbaraek
    Barbaraek Member Posts: 626
    #4
    I am not familiar with this condition

    but I wish you and your daughter health and healing. If you are unsure about your treatment options, it's always wise to seek out a second opinion.

    Barbara

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #5
    My husband had fibula free

    My husband had fibula free flap surgery in February 2015 due to osteosarcoma of the mandible.  The surgery was no cake walk, and he had complications initially because of damage from radiation prior to surgery.  His had to be revised two days after the first surgery with no complications after that.  This is major, major surgery.  It involves a tracheostomy and a feeding tube (feeding tube was for several several weeks.)  You are looking at a minimum surgery time fo 12-14 hours.  I would not consider this surgery unless it is the only option.  No cake walk.

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