@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.
You and your husband certainly have a lot on your plate right now. The decisions on where to go for treatment is one of the most important decisions when dealing with cancer. You are wise to consider a second opinion at Mayo Clinic.
It is not always necessary to have a referral in order to get an appointment at Mayo. Here is a link with information about scheduling an appointment. http://mayocl.in/1mtmR63. When you call, you can get more information about the wait time for an appointment as well as the cost, and other questions that you might have.
Will you post again and let me know how you and your husband are doing?
Thanks you so much for the kind words and the link. We have a the removal in a week. I think then we will go to Mayo Clinic for second opinion. Thanks again. MAC
@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.
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
@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.
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?
I went to emergency in November 2023 and did the biopsy in December. And then was diagnosed with CUP in December 2023. Although they tried ultrasound, MRI and PET scan after, no primary can be found still and they told me no pint to find that. I did the chemo and immunotherapy right away. After 16 chemos, I was on immunotherapy for around 6 months. Now they asked me to start new chemo again because the lymph nodes are getting bigger again. The swollen lymph nodes are several areas. This is very frustrating since no targeted medicine could be taken and stage 4 is not curable too. I would like to hear more suggestions if you know of anybody having similar situations.
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Yes thank you for the link!!
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2 Reactions@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.
-
Like -
Helpful -
Hug
2 ReactionsThanks you so much for the kind words and the link. We have a the removal in a week. I think then we will go to Mayo Clinic for second opinion. Thanks again. MAC
-
Like -
Helpful -
Hug
1 ReactionDear 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
-
Like -
Helpful -
Hug
3 ReactionsHello @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?
I went to emergency in November 2023 and did the biopsy in December. And then was diagnosed with CUP in December 2023. Although they tried ultrasound, MRI and PET scan after, no primary can be found still and they told me no pint to find that. I did the chemo and immunotherapy right away. After 16 chemos, I was on immunotherapy for around 6 months. Now they asked me to start new chemo again because the lymph nodes are getting bigger again. The swollen lymph nodes are several areas. This is very frustrating since no targeted medicine could be taken and stage 4 is not curable too. I would like to hear more suggestions if you know of anybody having similar situations.
-
Like -
Helpful -
Hug
2 Reactions