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Anyone have cancer with unknown primary?
Cancer | Last Active: Apr 29 2:11pm | Replies (187)Comment receiving replies
@maryannecrawford ,
I have CUP.
I had a lump in my neck ( lymph node). CT scan , guided ultrasound with fine needle aspiration. Conclusion at that time was it was the secondary site. PET scan showed tonsils with uptake. I had them removed and then learned tonsils were false for cancer. PET result was false positive. After recovery I then had a neck dissection to remove golf ball sized cancer tumour from my neck.
Pathology on the tumour still did not show what the primary was.
30 rounds of radiation on my neck, and 3 rounds of chemo (day0, 15,30) during the radiation.
I sent my tissue for second opinion. They suspect primary site is/was small cell lungcancer. I then had 4 more rounds of chemo every 3 weeks for 3 days. (12 days).
I found the recovery for tonsils harder than the neck dissection.
I don't regret getting a second opinion. A year later and it's still unknown primary but the histology type (neuroendocrine) is determined and I was additionally treated for their area they suspect it was primary.
Replies to "@maryannecrawford , I have CUP. I had a lump in my neck ( lymph node). CT..."
Hello @mbkcanada
I see that the tissue pathology indicated neuroendocrine. As a mentor of the Neuroendocrine Tumors (NETs) group, I would like to invite you to post in the NETs support group. Here is a link to that discussion group, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here you will meet others who were originally diagnosed with an unknown primary, including @firepowr.
I see that you are considering a second opinion at Mayo Clinic. This is a good way to proceed. Mayo Clinic has NET specialists at all three locations. Here is a link with information that will help you obtain an appointment, http://mayocl.in/1mtmR63
I look forward to hearing from you again. Will you continue to post with updates?
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Dear MBK, Thanks you so for sharing your experience. It sounds so similar to Joe. The tonsillectomy was very painful. He has dissection -removal on April 28. After that we will do the same as you have done and get a second opinion. In the meantime , we took some time for ourselves and are camping in the Appalachian mountains in Georgia. We thought it best to get out and get ourselves set for what’s to come. I hope your journey will continue to be towards better health. I sincerely appreciate your helpful insights. MAC