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    User: orchestra

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    Wow! Sounds eerily similar to me. I had urothelial carcinoma in my renal pelvis (stage III)) Had the kidney removed, and the DR only had me go in every 6 months for checks! Well, at the 12 month check it was all over! In my lymph nodes, other renal pelvis, around my adrenal gland, and growing into my diaphragm. I was just given 12 months with chemo. They want to start me on cisplatin and gemciabine. I am trying to be positive, but was not ready for that diagnosis! I have a 17 yr old daughter and am a single Mom

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      orchestra

      We are sooooo similar! I had urothelial carcinoma in BOTH ureters and both renal pelvis! My surgeon at UCLA said my chances of bilateral cancer of ureters was one in two million! This is NOT the kind of notoriety I wanted! One kidney was saved from surgery, both ureters replaced w/small intestine. I had extensive metastasis six months after surgery. I was given 24 months to live......with chemo. I was treated with carboplatin and gemzar...both good drugs. I was accepted in a clinical trial for Sutent (biologic for renal cell carcinoma). I am still on the drug 4 years later! There are no guarantees but at this point, I've been in remission for 4 years! After completion of your chemo, you might want to ask your Dr. about Sutent. He/she can also contact Dr. Steve Wong at Clark Urology, UCLA (Los Angeles). Since we are both Lynch (I've also had uterine , colon cancers ), perhaps Sutent would help you. It is worth asking about. My Drs. still don't know why I went into remission. I know how hard it is to stay positive, especially after a prognosis such as ours but there is always hope....I am living proof of that! You go girl!!!! My prayers are with you!

      Orchestra

      over 3 years ago
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    cchambers shared an experience

    Procedure or Surgery (Mohs surgery): Muir Torre syndrome (part of HNPCC). sebaceous carcinoma (many) Even two in my inner ear canal.

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    Procedure or Surgery (Surgery): had a nephroureterectomy

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    cchambers shared an experience

    Oh No (Money): I am unsure how to pay for my cancer surgery and all the follow-up visits required. I have been diagnosed with lynch/muir torre syndrome. Lynch specialist says it is the 3rd worst case she has seen.

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    • gizzyluv's Avatar
      gizzyluv

      My husband didn't have insurance when he was diagnosed, so he got in touch with the Social Security Department & they were so supportive & helpful. He is now getting a monthly check which at least pays our house payment. They also helped him get TennCare, (which is Medicaid in the state of Tennessee) & it pays for all of his cancer treatments. Good luck!

      almost 4 years ago
    • cchambers' Avatar
      cchambers

      Thank you for your comment. I am currently on social security for multiple sclerosis. Not worried about money as much as my 12 months to live (with chemo) diagnosis for the metastatic cancer. I could use some financial breaks, and may file for bankrupcy. Right now everything is going through my mind. I have only told my parents about the 12 months. I am so worried about my daughter (17)

      over 3 years ago