Cancer of unknown primary! what treatmens and how successful are they?
oncology handed down a verdict of stage four cancer. they know its cancer and where it is , but not what kind or where it started. The cancer so far doesn't seem to be in the organs but wide spread in soft tissue. Radiation treatments start this week and it will take two weeks for genetic testing to find out what kind it is. How can they determine that it is all the same type and if it will respond to treatment the same way.
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.
@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?
@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
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.
Hello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
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?
@maryannecrawford, getting a cancer diagnosis upends one's world. Hearing the diagnosis of cancer of unknown primary (CUP) adds to the anxiety. I hope that you've received a laymen's version of the diagnosis in the meantime.
Have you learned anything further? DId you submit a request for a second opinion at Mayo Clinic? How are YOU doing?
Hello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
Im not familiar with that particular cancer.
For consideration you might be interested in watching Dr. Thomas Seyfrieds interviews online. He's a professor at Boston College.
His belief is that cancer is metabolic and not necessarily genetic.
A good layman's book is Keto for Cancer By Miriam-Kalamian.
Its an excellent read and a different approach for treatment.
Dr Thomas Seyfried had written the forward to the book.
My sister read Chris Beats Cancer. She was following the food and keto kind of changes. She ended up with her ovarian cancer returning as she did not complete the conventional treatments and went the food and additives path. It is said on this site that everything is based on your own body. I carry a genetic mutation and 2 of my 4 siblings also carry it. Not sure if the other two were tested.
In K-12, i would love to see the students learn about food, additions, vitamins in food and separate. Like taking care of my skin when i was young. I did not. I sunned in California. My skin cancers started when i was 36.
We are all continuing to learn.
Connect
Connect
Like
Helpful
Hug
Cancer of unknown primary! what treatmens and how successful are they?
oncology handed down a verdict of stage four cancer. they know its cancer and where it is , but not what kind or where it started. The cancer so far doesn't seem to be in the organs but wide spread in soft tissue. Radiation treatments start this week and it will take two weeks for genetic testing to find out what kind it is. How can they determine that it is all the same type and if it will respond to treatment the same way.
-
Like -
Helpful -
Hug
2 ReactionsI 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
4 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?
-
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
4 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
3 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
4 ReactionsYes thank you for the link!!
-
Like -
Helpful -
Hug
3 ReactionsHello @maryannecrawford
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?
-
Like -
Helpful -
Hug
3 ReactionsHello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
-
Like -
Helpful -
Hug
1 ReactionMy sister read Chris Beats Cancer. She was following the food and keto kind of changes. She ended up with her ovarian cancer returning as she did not complete the conventional treatments and went the food and additives path. It is said on this site that everything is based on your own body. I carry a genetic mutation and 2 of my 4 siblings also carry it. Not sure if the other two were tested.
In K-12, i would love to see the students learn about food, additions, vitamins in food and separate. Like taking care of my skin when i was young. I did not. I sunned in California. My skin cancers started when i was 36.
We are all continuing to learn.