Year ago I noticed an enlarged inguinal lymph node. At the beginning of May, 2020, I had an operation (extirpation of that lymph node) and was diagnosed with neuroendocrine cancer, poorly differentiated, of unknown primary origin . I did PET CT of the whole body (every 6 months), CT of the chest, MRI of the abdomen and small pelvis, every 3 months since then. I had 5 metastasis and 4 of them was surgicaly removed.
Regarding therapy, after diagnosis of NEC-G3 (neuroendocrine cancer, gradus 3), I received 3 cycles of chemotherapy (cisplatin and etoposide) from june to august 2020, but with no success (metastasis enlarged). I went to Sweden, Uppsala, where there is a center for NET, to get second opinion, but they do not give a definitive diagnosis there either (because they do not have reagents to prove Merkel cell carcinoma- MCC), nor do they advise where to go to confirm the diagnosis. Month ago, they discovered me a metastasis in the middle chest, at the level of the 8th thoracic vertebra. I have an X-knife (a type of radiological therapy) for this metastasis, hope it would be successfull.
With the help of dr Astrid Blum, I get in contact with dr Jurgen Becker in Germany and dr Samimi Mahtab in France. I sent my pathology blocks to prof Becker where they confirm diagnosis of MCC. Also, I sent my blood to France where they will perform AMERK test. I want to share with you that I didn't pay anything for those tests, only the cost of transport.
Now, maybe paradoxically, but I am happy to know that I confirmed diagnosis of MCC. I am waiting for my treatment plan, hope that I will get Keytruda soon (it is the only treatment options here in Serbia).
Hope that this post would be useful fro someone who is in similair situation.
Best,
Jasminka
