The primary has never been found. I was treated 2017-2019 with surgery, radiation, and immunotherapy. I have been scanned and tested on a regular basis. The last 3 years I have just had annual test because I had no active cancer. This spring(2024) my brain MRI showed 2 new spots. Those were treated with radiation. Biopsy and surgery were not an option. I also had 2 basil skin cancers and those were treated. I now have cancer in lymph node below esophagus. A biopsy was taken but still unknown cancer. The node is in a location that is not safe for radiation or surgery so no treatment at this time.
Good morning, @kr60cup I just noticed that you’ve been a member for almost 6 years but this is your first time with a reply! So let me officially welcome you to the forum!
You were diagnosed with cancer of unknown primary 7 years ago this month. I’m curious to know if the primary source ever discovered? Have you been treated and now in remission?
Good morning everyone,
It is time for an update. I am still on maintenance chemo although at my last CT scan, there was very slight growth in some of my...well, growths. Still feeling pretty good physically, but emotionally, I am sad because my sweetheart, who was doing well, unexpectedly died this past weekend. I was very fortunate to have spent time with him the day before and to have been close by (his nursing home was 90 minutes from where I live because although he was mentally still cognizant, he no longer could perform any of his ADLs, and there were no facilities that could take care of him in my community). I am very lucky that: 1) we met 12 years ago; and 2) had the time and adventures together that we had! Quality over quantity...
Thanks for reading this far. Remember, cancer is tough but we are tougher.
Sheri
@sheridonaldson, I'm so sorry to hear of the unexpected loss of your sweetheart. I know these first days after loss are busy and one moves by putting one foot in front of the other. I hope that you have many around you, supporting you and sharing the tasks that have to be done. When and if you need to connect with others, please know that there is also this support group:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/
Thank you @lizfuller for sharing this. It is very helpful.
Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?
Best of luck with your upcoming systemic treatment.
my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done and eventually sent my samples to an external lab that does advance "point of origin" testing. Early indications from mutations and variants found in the testing led us to believe it could have originated in the GI tract or the lungs. PET and CT scans at first showed no cancer anywhere but my neck. So I went through colonoscopy, several endoscopies, traditional as well as a video capsule to make sure we checked the small intestine. I think I was getting CTs and PETs every 2-4 months with 6 weeks being the shortest. eventually a few nodes surfaced in my lungs, and the point of origin testing came back with 97% certainty that this was the primary. it has recurred in my neck after having surgery and radiation last year. I start systemic treatment in July.
Thank you @lizfuller for sharing this. It is very helpful.
Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?
Best of luck with your upcoming systemic treatment.
Good morning everyone,
It is time for an update. I am still on maintenance chemo although at my last CT scan, there was very slight growth in some of my...well, growths. Still feeling pretty good physically, but emotionally, I am sad because my sweetheart, who was doing well, unexpectedly died this past weekend. I was very fortunate to have spent time with him the day before and to have been close by (his nursing home was 90 minutes from where I live because although he was mentally still cognizant, he no longer could perform any of his ADLs, and there were no facilities that could take care of him in my community). I am very lucky that: 1) we met 12 years ago; and 2) had the time and adventures together that we had! Quality over quantity...
Thanks for reading this far. Remember, cancer is tough but we are tougher.
Sheri
I appreciate you sharing your story of finding the point of origin of your cancer. It sounds like your doctor was very dedicated to the task of finding this unknown primary.
What type of symptoms led to this search? How long was it before the testing found the lung cancer?
I lost my voice, there were nodes on my thyroid and vocal nerve, so biopsies and ultrasounds and then CT/PET and surgery was about 6 months, then colonoscopy and endoscopy at about 8 months after 1st biopsy, radiation and then post radiation scans id say about a year from the 1st signs of the neck cancer when I presented with a few small nodes in lungs and then had a bronchoscopy to get a lung biopsy which at that point the oncologist went to town testing it, sent to Tempus.
my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done and eventually sent my samples to an external lab that does advance "point of origin" testing. Early indications from mutations and variants found in the testing led us to believe it could have originated in the GI tract or the lungs. PET and CT scans at first showed no cancer anywhere but my neck. So I went through colonoscopy, several endoscopies, traditional as well as a video capsule to make sure we checked the small intestine. I think I was getting CTs and PETs every 2-4 months with 6 weeks being the shortest. eventually a few nodes surfaced in my lungs, and the point of origin testing came back with 97% certainty that this was the primary. it has recurred in my neck after having surgery and radiation last year. I start systemic treatment in July.
I appreciate you sharing your story of finding the point of origin of your cancer. It sounds like your doctor was very dedicated to the task of finding this unknown primary.
What type of symptoms led to this search? How long was it before the testing found the lung cancer?
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Good morning @kr60cup! Thank you so much for sharing. I was diagnosed in May 2022 and this gives me a lot of hope.
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2 ReactionsThe primary has never been found. I was treated 2017-2019 with surgery, radiation, and immunotherapy. I have been scanned and tested on a regular basis. The last 3 years I have just had annual test because I had no active cancer. This spring(2024) my brain MRI showed 2 new spots. Those were treated with radiation. Biopsy and surgery were not an option. I also had 2 basil skin cancers and those were treated. I now have cancer in lymph node below esophagus. A biopsy was taken but still unknown cancer. The node is in a location that is not safe for radiation or surgery so no treatment at this time.
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Helpful -
Hug
5 ReactionsGood morning, @kr60cup I just noticed that you’ve been a member for almost 6 years but this is your first time with a reply! So let me officially welcome you to the forum!
You were diagnosed with cancer of unknown primary 7 years ago this month. I’m curious to know if the primary source ever discovered? Have you been treated and now in remission?
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Hug
2 ReactionsYes, I was diagnosed in July of 2017 with CUP.
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1 Reaction@sheridonaldson, I'm so sorry to hear of the unexpected loss of your sweetheart. I know these first days after loss are busy and one moves by putting one foot in front of the other. I hope that you have many around you, supporting you and sharing the tasks that have to be done. When and if you need to connect with others, please know that there is also this support group:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/
Sending you a virtual hug.
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5 Reactionsyes. good luck with your hunt.
Thank you @lizfuller for sharing this. It is very helpful.
Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?
Best of luck with your upcoming systemic treatment.
-
Like -
Helpful -
Hug
1 ReactionGood morning everyone,
It is time for an update. I am still on maintenance chemo although at my last CT scan, there was very slight growth in some of my...well, growths. Still feeling pretty good physically, but emotionally, I am sad because my sweetheart, who was doing well, unexpectedly died this past weekend. I was very fortunate to have spent time with him the day before and to have been close by (his nursing home was 90 minutes from where I live because although he was mentally still cognizant, he no longer could perform any of his ADLs, and there were no facilities that could take care of him in my community). I am very lucky that: 1) we met 12 years ago; and 2) had the time and adventures together that we had! Quality over quantity...
Thanks for reading this far. Remember, cancer is tough but we are tougher.
Sheri
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Like -
Helpful -
Hug
5 ReactionsI lost my voice, there were nodes on my thyroid and vocal nerve, so biopsies and ultrasounds and then CT/PET and surgery was about 6 months, then colonoscopy and endoscopy at about 8 months after 1st biopsy, radiation and then post radiation scans id say about a year from the 1st signs of the neck cancer when I presented with a few small nodes in lungs and then had a bronchoscopy to get a lung biopsy which at that point the oncologist went to town testing it, sent to Tempus.
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Like -
Helpful -
Hug
2 ReactionsHello @lizfuller and welcome to Mayo Connect.
I appreciate you sharing your story of finding the point of origin of your cancer. It sounds like your doctor was very dedicated to the task of finding this unknown primary.
What type of symptoms led to this search? How long was it before the testing found the lung cancer?