Transitional Cell Carcinoma in my tear ducts

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jimmysprinkle
jimmysprinkle Member Posts: 2
in Head and Neck Cancer #1

Just wondering if anyone else has been diagnosed with Transitional Cell Carcinoma of their eye? I went blind briefly in my right eye in February of 2016, radiologist missed the obvious tumor on MRI review, so it was another 9 months of growth until my right eye started to bulge out. A CT scan showed a mass the size of a grape, but it wasn't diagnosed as cancer until after I had a Dacriocystorhiniplasty and biopsy revealed TSC. I'm told this is a very rare cancer with less than 70 cases in the last 20 years. Now the doctors want to open up my face and remove a lot of bone from the eye socket/orbit and nose bone, then reconstruct with titanium parts. They say possible radiation afterwards depending on post-op PET. Anybody out there have a similiar diagnosis? I've got no one to bounce anything off of, so I'm kinda at the mercy of medical experts, and they don't have a lot of previous experience with this crap. Thanks for reading regardless. 

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  • Grandmax4
    Grandmax4 Member Posts: 723
    #2
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    so sorry to hear this

    I, myself, have no experience with this cancer. I just wanted to urge you to go for a second opinion, a large Cancer center would be best . I cant really make a judgement on what they want to do, but, it sounds radical. My cancer was on my epiglottis, 5years, 4 months out, living without an epiglottis and doing wonderful. It was a rare cancer also.I wish you only the best, and I hope you will remain on this board, someone, has no doubt heard of this.

  • jimmysprinkle
    jimmysprinkle Member Posts: 2
    edited March 2017 #3
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    hey thanks

    I've got an appointment tomorrow with one of the surgeons that will be doing the cut/paste. Hopefully we can get a date set up and we can discuss the healing process etc. I hate waking up from surgeries with a surprise, so for now I'm focusing on the aftercare part. All the literature I can find online about Transitional Cell Carcinoma in the Lacrimal Ducts says that early detection is key, and getting a wide margin important. I will up after my appointment but with so few cases I guess Im just kind of posting for therapy. Peace

  • EsGirl
    EsGirl Member Posts: 5
    #4
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    jimmysprinkle said:

    hey thanks

    I've got an appointment tomorrow with one of the surgeons that will be doing the cut/paste. Hopefully we can get a date set up and we can discuss the healing process etc. I hate waking up from surgeries with a surprise, so for now I'm focusing on the aftercare part. All the literature I can find online about Transitional Cell Carcinoma in the Lacrimal Ducts says that early detection is key, and getting a wide margin important. I will up after my appointment but with so few cases I guess Im just kind of posting for therapy. Peace

    Hi Jimmy!

    Hi Jimmy!

    My hubby also has cancer in his lacrimal sac/gland. How are you doing? Side effects from treatment are currently kicking his butt. 
    Eric just finished radiation/chemo 3 weeks ago. Any advice or tips you have would be great. We hope this finds you well and would love to hear back from you.

    Danika

     

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #5
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    EsGirl,

    I'm glad to hear your husband completed his treatment, and I hope it turns out to be totally successful!

    I had some of the treatment you describe, although our Cancers differed a bit.

    The after-effects of Radation and Chemo can certainly be a challenge, but I've been finished for 8 months, and I continue to get stronger each day!

    One of the best things I did, was get back into the gym, and it has helped me a lot. Your husband may get frustrated at times, but trust me - he will get back to being himself in time!

    My best thoughts and prayers are being sent your way...

    mg

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #6
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    EsGirl,

    If you start a new thread, you may find more people who can advise you, and provide support. There are very good and helpful people on here!

    mg

  • EsGirl
    EsGirl Member Posts: 5
    edited February 2020 #7
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    motorcycleguy said:

    EsGirl,

    If you start a new thread, you may find more people who can advise you, and provide support. There are very good and helpful people on here!

    mg

    I'll let Eric know what you

    I'll let Eric know what you suggested. I think it is sound advice and could help. Thanks so much mg!

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