Paraganglinoma (Abdomen)

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  • dexster23
    dexster23 Member Posts: 1
    #22
    agueldner said:

    paraganglioma
    My husband had a tumor near his liver and kidney.. they removed it back in june.. they said it was not cancer but my husband satrted feeling so much better. No more night sweats, throwing up, or abdominal pain. 5 weeks post surgery he started getting all the symptoms again. He went back into see the surgeon and they ordered another CT.. within 6 weeks post surgery, he developed another tumor in the same region, this time against the vena cava. This tumor was quadruple the size of the last one. He was referred to San Antonio to a speciaty surgeon and when reviewed past scans, surgery and biopsies on last tumor and scan of current tumor he decided my husband needed to be referred to an oncologist. We met with the oncologist that diagonsed him with paraganglioma and it being cancer.. they have never done any scans of his head nor chest so this next week he is having a full body CT and meeting with a genetic counselor to be tested. He also has to have a MIBG scan.. the doctor told him there was no chemo nor radiation to cure this type of cancer only surgery and it was major. From reading previous post I am more confused then ever.. and scared!! Can someone please give me a little more info on what to expect? We have children as well.. thank you!!

    Paraganglinoma in abdomen
    Hello,

    My mother was diagnosed with stage 4 paraganglinoma in the abdomen and also on her spine. Is seeing Dr. Fitzgerald at UCSF and is scheduled for a major surgery. Just was wondering what other treatments are out there as well as any words of encouragement.Thanks. Hope someone sees this.
  • ValerRose
    ValerRose Member Posts: 6
    #23
    agueldner said:

    paraganglioma
    My husband had a tumor near his liver and kidney.. they removed it back in june.. they said it was not cancer but my husband satrted feeling so much better. No more night sweats, throwing up, or abdominal pain. 5 weeks post surgery he started getting all the symptoms again. He went back into see the surgeon and they ordered another CT.. within 6 weeks post surgery, he developed another tumor in the same region, this time against the vena cava. This tumor was quadruple the size of the last one. He was referred to San Antonio to a speciaty surgeon and when reviewed past scans, surgery and biopsies on last tumor and scan of current tumor he decided my husband needed to be referred to an oncologist. We met with the oncologist that diagonsed him with paraganglioma and it being cancer.. they have never done any scans of his head nor chest so this next week he is having a full body CT and meeting with a genetic counselor to be tested. He also has to have a MIBG scan.. the doctor told him there was no chemo nor radiation to cure this type of cancer only surgery and it was major. From reading previous post I am more confused then ever.. and scared!! Can someone please give me a little more info on what to expect? We have children as well.. thank you!!

    Hi!
    I had a Carotid
    Hi!

    I had a Carotid Paraganglioma removed in February.

    I hope you've found some more information by now. They are very rare tumors and it's even more rare to have recurrences or mets as your husband has.

    There are some great places to get information on the net for this these days. The first place I would recommend is www.pheoparatroopers.org The second I would recommend is a Facebook group that is VERY active--so much so that it makes you feel like you really aren't so "rare" after all. :)

    https://www.facebook.com/groups/pheoparasupportgroup/

    These tumors are tricky and it's so important to have support. You and your husband are NOT alone! I also hope you've found some knowledgeable doctors to operate. I opted to go to the NAtional Institutes of Health in Bethesda, Maryland to see Dr. Karel Pacak--Get this. He's an expert on Pheochromocytoma and Paraganglioma.

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