Hello everyone. I'm so glad to be posting to this forum which was such a great reference when I was diagnosed with stage Ib seminoma in June 2014. I can't imagine how much time and effort it saved me finding answers to the questions I had regarding what, at that time seemed like a scary and mysterious condition even though I came to find that my case was routine and very treatable. As it turns out that experience was valuable preparation for where I am now with recurrent seminoma with distant metastasis.
With my first bout in 2014 I decided to be treated by a local oncologist after a very kind response from Dr. Einhorn and a consult at Columbia. After the right orchiectomy I was treated with 1 dose of carboplatin with hopes to put it all behind me. Follow up CT scans and bloodwork were clear.
When my tests were done for this recent recurrence I sent an email to Dr. Einhorn again and he said "this is a very unusual case."
I have metastasis to the left clavicular lymph nodes and left pelvic lymph node. A large metastasis in a right aortocaval node (the PET report says 5x5cm but I can easily palpate it and it feels like it's at least 10cm long). A cyst on the left kidney. A 1.6 cm metastasis on the right adrenal. Metastasis in the subcarinal and paraesophageal region with a 1.8 cm met. Abnormal metabolic activity in the hila. A possible lesion and necrosis of the posterior right lobe of the liver.
Strangely(?) tumor markers are normal. In 2014 I had elevated HCG but not now.
Because I presented right before Christmas (and due to everything else that's happening) things have moved slowly, but I had a port put in this past Wed. and I'll be seeing a testicular and kidney cancer expert at Sloan Kettering Memorial next week, so hopefully treatment is not far off now. I have no idea what it will be but I suspect it will not be easy. Looking forward to hearing from others and sharing as this unfolds. Thank you all!
Brendan
With my first bout in 2014 I decided to be treated by a local oncologist after a very kind response from Dr. Einhorn and a consult at Columbia. After the right orchiectomy I was treated with 1 dose of carboplatin with hopes to put it all behind me. Follow up CT scans and bloodwork were clear.
When my tests were done for this recent recurrence I sent an email to Dr. Einhorn again and he said "this is a very unusual case."
I have metastasis to the left clavicular lymph nodes and left pelvic lymph node. A large metastasis in a right aortocaval node (the PET report says 5x5cm but I can easily palpate it and it feels like it's at least 10cm long). A cyst on the left kidney. A 1.6 cm metastasis on the right adrenal. Metastasis in the subcarinal and paraesophageal region with a 1.8 cm met. Abnormal metabolic activity in the hila. A possible lesion and necrosis of the posterior right lobe of the liver.
Strangely(?) tumor markers are normal. In 2014 I had elevated HCG but not now.
Because I presented right before Christmas (and due to everything else that's happening) things have moved slowly, but I had a port put in this past Wed. and I'll be seeing a testicular and kidney cancer expert at Sloan Kettering Memorial next week, so hopefully treatment is not far off now. I have no idea what it will be but I suspect it will not be easy. Looking forward to hearing from others and sharing as this unfolds. Thank you all!
Brendan
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