I was diagnosed with metastasis squamous carcinoma of unknown primary, at stage 4. The inguinal lymph modes had large ganglions. After many tests, I had a PER/CT scan. Cancer of the hepatic hilar , and traces in the ganglions were found. Enlarged heart and two other growths found. Final biopsy was requested to see , even though the tumor has nor been found, they could find the source. No operations at this this stage. Just daily radiation therapy for weeks, combined with chemo. What your friend is experiencing sounds scary. It seems after the vaxx more CUP cancer is popping up. Wish yr friend luck.
I have a close friend who was diagnosed with a low grade cancer. Last month they removed a mass from her stomach. They cannot find the source. In late April, she is scheduled for a 14 hour surgery. They are using what she called a new technique that involves a one time, large blast of chemo.
Apparently, they will be looking at all her organs in an attempt to locate the origin. She is very sketchy on details. They mentioned removing part of her stomach and intestines and the possibility of an ostomy bag. Has anyone every heard of this type of procedure? Thank you.
I'm sharing an update on my husband's cancer of unknown primary (CUP). Soon it will be year 8 of my husband being diagnosed with a small tumor in his lung and an 'angry' lymph node near his lung and heart. For two years the cancer stayed pretty much stagnant (no spread) but his health was poor. Looking back I believe that there were several reasons for his ill health - the cancer, an undiagnosed heart condition called SVT which caused fainting spells and has been fixed by an ablation, COPD, benign essential tremor, and pain from a serious accident that damaged his feet in his teens, which still continues to be one of his major sources of pain.
After two years the cancer spread to his hip, his spine (maybe his adrenal glands) and his blood tumor marker tests were 1000% over normal (how is that even possible). He opted for 3 types of radiation over the years - standard radiation, cyberknife and a third highly targeted radiation treatment. He also had 3 rounds of chemo (only 3) with Cisplatin and Keytruda Immonotherapy.
Something here worked! He has been free of active cancer now for just under a year. We continue with PET scans every 3-4 months and blood work. The CEA blood tests he has each quarter will rise significantly when the cancer has come back or is going to come back. For him it shows the circulating cancer in his system. We still don't know the cancer type but since the lymph node that was spreading the cancer has been all but destroyed, the cancer seems to be in remission (of sorts).
We are now focusing on all the other health issues he has and some that were caused or heightened by the treatment. During this 'quiet times' we try to get his body as strong as possible and address symptoms that may not be related to the cancer.
My husband was told he had 'months' to live at best and here he is years later. Due to this being CUP it's very hard to know what worked or what will happen, Each PET Scan is scary for us......but we hope that perhaps the cancer is gone, at least for a long time.
Sheri,
I've been super busy (aren't we all) and apologize for not being more in touch. If we start a conversation on here I think we can accomplish a lot....so please let me know how I can help. I will private message you and you can reply.
Colleen Young, Connect Director | @colleenyoung | Mar 29, 2023
@cindylb and @sheridonaldson, how kind of you to wish to exchange emails. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
Certainly. How would you like to do that? Is there a private chat on here or do you mean by phone or private email? Just let me know what works for you.
Yes, - I have - after finding very big ganglions in both sides of the groin.
6 months later, I have not yet had treatment, and no side effects at all. To date the primary site has not been found. Per-CT scan confirmed that the Ganglion (inguinal lymph modes) and hepatic hilar has a tumor growth. Dont live on USA so options are limited. Will start treatment of Radiation then chemo after the ganglion biopsy has given origin of primary site. If it does not, what then?
I had tumor growth in the inguanal lymph nodes mentioned March 7th. After many many biopsies they never were able to detect the primary source. They were able to understand the type of cancer from the biopsies though. I just finished radiation with chemo (cisplatin) for 6 weeks. They did a scan and there was no cancer detected. I will have a scan every 3 months for the next year or so. So far so good. The treatment wasn't easy but definitely worth it. Feeling pretty good now !!
Yes, - I have - after finding very big ganglions in both sides of the groin.
6 months later, I have not yet had treatment, and no side effects at all. To date the primary site has not been found. Per-CT scan confirmed that the Ganglion (inguinal lymph modes) and hepatic hilar has a tumor growth. Dont live on USA so options are limited. Will start treatment of Radiation then chemo after the ganglion biopsy has given origin of primary site. If it does not, what then?
I too have been diagnosed with unknown primary cancer. My cancer was detected in my lymph nodes in my pelvis. Its squamous cell. I have had over a dozen biopsies of the cervix, vaginal area, along with every scan scope possible with still no source. they removed a lymph node so further pathology cold be done at a specialized lab. Im currently in Chicago being treated at Northwestern Memorial. I finish 6 rounds of Chemo Cispltain with daily radiation of 6 weeks. Next step is to have more scans done to ensure no cancer has spread to other lymph nodes as the radiation was local. This will determine next path. This is what worries me the most, living with the fear that there may be still cancer traveling within my body. Anyone out there experiencing the same.
I'm going on the assumption that previous entry dates that don't show a year have been posted in the current one. I am 65 - Medicare has kicked in - and up until recently in overall good health; no problems, no medications, etc., living in Portland, Oregon.
While shaving last March I noticed a swelling on the right side of my neck which I called to the attention of my PCP on a following unrelated visit. Short story: I was referred to an ORL specialist whom I did not get to see until August; she felt a biopsy was needed to make further diagnosis.
Biopsy results came back in September showing a Squamous Cell Carcinoma of a Lymph node requiring further testing to try identify any primary source. I underwent a laryngoscopy/biopsy (9 points in the tongue/tonsil/throat area, under anesthesia) and a full PET Scan in October.
Yes, weeks and months go by... The tests revealed No Primary source of Cancer so the diagnosis has become: Cancer [of] Unknown Primary or CUP.
The treatment now being suggested is a mix of daily radiation for seven (7) weeks with weekly dosing of chemotherapy (Cisplatin) to reinforce the action of the radiation. I'm sure I do not need to explain the side effects of such a treatment even if I don't know how it will affect me personally.
At this point I'm just asking myself a certain number of questions from quality of life to financial risks. To put it differently I don't want to end up impotent, penniless and looking at endless tests/treatments down the road.
I'm sorry not to be able to offer advice at this time but would greatly appreciate any and all suggestions on avoiding any pitfalls at this time. Should one "shop around" for care centers, insist on second opinions, look into other treatment options? The literature out there can be all over the place, hospital brochures offer rosy outcomes and "Care Teams" don't always communicate very well. I will make sure to communicate my own findings here.
My very best to all, patients, families and friends,
I read and article in AARP about a test called Galleri. It is suppose to have a fairly high rate of detecting what part of the body the DNA scrap found in your blood originated from. I took this test on Monday and they said the results would be available in about two weeks. The article from Cleveland clinic was encouraging. It was $945 out of pocket. I am just a patient and have no gain in telling you about this. I took the test because of troubling symptoms I have had for two years. You have to be over 50 to be eligible. Also, does your radiology provider have access to PROTON RADIATION. I spoke to a retired health physicist that is an expert on ionizing radiation effects on the body and he told me, if all possible, always use PROTON because it does the least amount of collateral damage. I know that Loma linda has it and I think some of the Mayo clinics also. There are new ones coming on line all the time.
Connect
Connect
Like
Helpful
Hug
I was diagnosed with metastasis squamous carcinoma of unknown primary, at stage 4. The inguinal lymph modes had large ganglions. After many tests, I had a PER/CT scan. Cancer of the hepatic hilar , and traces in the ganglions were found. Enlarged heart and two other growths found. Final biopsy was requested to see , even though the tumor has nor been found, they could find the source. No operations at this this stage. Just daily radiation therapy for weeks, combined with chemo. What your friend is experiencing sounds scary. It seems after the vaxx more CUP cancer is popping up. Wish yr friend luck.
I have a close friend who was diagnosed with a low grade cancer. Last month they removed a mass from her stomach. They cannot find the source. In late April, she is scheduled for a 14 hour surgery. They are using what she called a new technique that involves a one time, large blast of chemo.
Apparently, they will be looking at all her organs in an attempt to locate the origin. She is very sketchy on details. They mentioned removing part of her stomach and intestines and the possibility of an ostomy bag. Has anyone every heard of this type of procedure? Thank you.
I'm sharing an update on my husband's cancer of unknown primary (CUP). Soon it will be year 8 of my husband being diagnosed with a small tumor in his lung and an 'angry' lymph node near his lung and heart. For two years the cancer stayed pretty much stagnant (no spread) but his health was poor. Looking back I believe that there were several reasons for his ill health - the cancer, an undiagnosed heart condition called SVT which caused fainting spells and has been fixed by an ablation, COPD, benign essential tremor, and pain from a serious accident that damaged his feet in his teens, which still continues to be one of his major sources of pain.
After two years the cancer spread to his hip, his spine (maybe his adrenal glands) and his blood tumor marker tests were 1000% over normal (how is that even possible). He opted for 3 types of radiation over the years - standard radiation, cyberknife and a third highly targeted radiation treatment. He also had 3 rounds of chemo (only 3) with Cisplatin and Keytruda Immonotherapy.
Something here worked! He has been free of active cancer now for just under a year. We continue with PET scans every 3-4 months and blood work. The CEA blood tests he has each quarter will rise significantly when the cancer has come back or is going to come back. For him it shows the circulating cancer in his system. We still don't know the cancer type but since the lymph node that was spreading the cancer has been all but destroyed, the cancer seems to be in remission (of sorts).
We are now focusing on all the other health issues he has and some that were caused or heightened by the treatment. During this 'quiet times' we try to get his body as strong as possible and address symptoms that may not be related to the cancer.
My husband was told he had 'months' to live at best and here he is years later. Due to this being CUP it's very hard to know what worked or what will happen, Each PET Scan is scary for us......but we hope that perhaps the cancer is gone, at least for a long time.
-
Like -
Helpful -
Hug
5 ReactionsSheri,
I've been super busy (aren't we all) and apologize for not being more in touch. If we start a conversation on here I think we can accomplish a lot....so please let me know how I can help. I will private message you and you can reply.
-
Like -
Helpful -
Hug
1 Reaction@cindylb and @sheridonaldson, how kind of you to wish to exchange emails. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
-
Like -
Helpful -
Hug
1 ReactionHello cindylb, I apologize for not getting back to you sooner.
-
Like -
Helpful -
Hug
1 ReactionI had tumor growth in the inguanal lymph nodes mentioned March 7th. After many many biopsies they never were able to detect the primary source. They were able to understand the type of cancer from the biopsies though. I just finished radiation with chemo (cisplatin) for 6 weeks. They did a scan and there was no cancer detected. I will have a scan every 3 months for the next year or so. So far so good. The treatment wasn't easy but definitely worth it. Feeling pretty good now !!
-
Like -
Helpful -
Hug
5 ReactionsYes, - I have - after finding very big ganglions in both sides of the groin.
6 months later, I have not yet had treatment, and no side effects at all. To date the primary site has not been found. Per-CT scan confirmed that the Ganglion (inguinal lymph modes) and hepatic hilar has a tumor growth. Dont live on USA so options are limited. Will start treatment of Radiation then chemo after the ganglion biopsy has given origin of primary site. If it does not, what then?
-
Like -
Helpful -
Hug
3 ReactionsI too have been diagnosed with unknown primary cancer. My cancer was detected in my lymph nodes in my pelvis. Its squamous cell. I have had over a dozen biopsies of the cervix, vaginal area, along with every scan scope possible with still no source. they removed a lymph node so further pathology cold be done at a specialized lab. Im currently in Chicago being treated at Northwestern Memorial. I finish 6 rounds of Chemo Cispltain with daily radiation of 6 weeks. Next step is to have more scans done to ensure no cancer has spread to other lymph nodes as the radiation was local. This will determine next path. This is what worries me the most, living with the fear that there may be still cancer traveling within my body. Anyone out there experiencing the same.
-
Like -
Helpful -
Hug
1 ReactionI read and article in AARP about a test called Galleri. It is suppose to have a fairly high rate of detecting what part of the body the DNA scrap found in your blood originated from. I took this test on Monday and they said the results would be available in about two weeks. The article from Cleveland clinic was encouraging. It was $945 out of pocket. I am just a patient and have no gain in telling you about this. I took the test because of troubling symptoms I have had for two years. You have to be over 50 to be eligible. Also, does your radiology provider have access to PROTON RADIATION. I spoke to a retired health physicist that is an expert on ionizing radiation effects on the body and he told me, if all possible, always use PROTON because it does the least amount of collateral damage. I know that Loma linda has it and I think some of the Mayo clinics also. There are new ones coming on line all the time.
-
Like -
Helpful -
Hug
1 Reaction