Glomus Jugulare Tumor / Malignant / Glomus Tumor / Carotid

egge
egge Member Posts: 20
edited March 2014 in Head and Neck Cancer #1
My husband a very handsome police seargent (35 years old) was diagnosed with this kind of tumor on his left ear. He just had surgery on June 11, 04 in Rochester MN. It had spread to a couple of lymph nodes on his left side. He is leaving to go back to Mayo Clinic on Aug 1 to start radiation. I will love to compare notes and hear possitive feedback. This is a scary time in our lifes that I would have never imagine, but we try dealing with it on a daily basis. We are a young family from North Dakota, we have 2 girls, a 3 year old and a 2 month old. My baby was borned 2 weeks before daddy's surgery. I am overwhelm with emotions and trying to find some positive stories and some info. Thank you and God bless you and your families!

Comments

  • TereB
    TereB Member Posts: 286 Member
    #2
    Hi egge, I just replied to your message in the Rare Cancers Board. I have the same thing as your husband and I have been dealing with this for 17 years. Go check my message in the Rare Cancers. God Bless,
    Tere
  • TereB
    TereB Member Posts: 286 Member
    #3
    Hi egge, I just replied to your message in the Rare Cancers Board. Please go there anad see my reply. God Bless,
    Tere
  • barosebud
    barosebud Member Posts: 12
    #4
    Hello,
    I read your story about your husband's tumor. My husband, a veterinarian(47 years old) had (we thought...benign)a carotid body tumor(glomus jugulare) removed 13 years ago. He has since been diagnosed (two years ago) with a glomus vagale tumor that was malignant and had spread throughout his body(spine, bone, liver). I know your emotions and understand your concern. My husband is doing wonderfully. Have hope that your husband will recover and do well too.
    Email us at jbhjt@mindspring.com and I will give you two some information that you may want to share with his doctor about a great treatment study that my husband participated in last year. His latest scans show major shrinkage of tumors, with his blood work returning to normal levels.
    We live near the Cincinnati, Ohio area and were lucky to get in with an oncologist who knew of this study and had other patients undergoing the same treatment. We have two children 17 and 20. It's a scary time, I know, but there is much to be hopeful for. His tumor is rare, but it is also slow growing.
    Expect a miracle!

    Sincerely,
    Beth Talmadge
  • egge
    egge Member Posts: 20
    #5
    barosebud said:

    Hello,
    I read your story about your husband's tumor. My husband, a veterinarian(47 years old) had (we thought...benign)a carotid body tumor(glomus jugulare) removed 13 years ago. He has since been diagnosed (two years ago) with a glomus vagale tumor that was malignant and had spread throughout his body(spine, bone, liver). I know your emotions and understand your concern. My husband is doing wonderfully. Have hope that your husband will recover and do well too.
    Email us at jbhjt@mindspring.com and I will give you two some information that you may want to share with his doctor about a great treatment study that my husband participated in last year. His latest scans show major shrinkage of tumors, with his blood work returning to normal levels.
    We live near the Cincinnati, Ohio area and were lucky to get in with an oncologist who knew of this study and had other patients undergoing the same treatment. We have two children 17 and 20. It's a scary time, I know, but there is much to be hopeful for. His tumor is rare, but it is also slow growing.
    Expect a miracle!

    Sincerely,
    Beth Talmadge

    Thank you for responding and for your encouraging words. We are pretty new at this and are trying to stay calm and possitive. My husband in fact is doing great, he is recovering and he is a very possitive, easy going kid of guy. I, on the other hand am the "Stress Out one" I will email you shortly. Thanks again, Jessica Egge
  • egge
    egge Member Posts: 20
    #6
    TereB said:

    Hi egge, I just replied to your message in the Rare Cancers Board. Please go there anad see my reply. God Bless,
    Tere

    Thanks Tere for your response. I will email you to compare notes.
    Jessica Egge

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