I have squamous cell carcinoma on the right side of my neck. They could not find my primary through the scans and biopsies either. In March I had a 7.5-hour surgery. They found it. It was very small spot on the back of my tongue. They removed it and 27 lymph nodes and 4 were cancerous, my tonsils, and several teeth. I finished radiation the end of May. My Dr. said that it wouldn't just go away.
Hi @jon6063 ,
Do you mind me asking if the 7.5 hour surgery was exploratory? My unknown primary hasn't showed up in 20 months but lots of scans etc. Had neck dissection and tonsillectomy then chemo/radiation. Latest PET shows uptake in mouth, but ENT's oral exam didn't find anything. Was it an ENT that did the surgery?
Surgery 8/12 for a right side tonsil removal, partial back of tongue, & possibly a neck dissection. 8/8 is the Tumor Board Meeting where they will decide for sure. The reasoning is to find the primary and remove it in surgery to possibly avoid radiation & chemo. A lot of ifs and maybes….. Also chance of ENE, the spread of cancer cells in my neck when they did the biopsy and later the removal.
I’m 71 F and awaiting my first oncology appointment. I’ve had CT & PET scans of my enlarged lymph node in my neck. Finally had surgery to remove it and do a second biopsy on it. Positive for metastatic p16+ squamous cell carcinoma, strong pancytokeratin and p40 positivity. All tests have shown a primary lesion is not identified. Only the lymph node lit up in the PET. So far my ENT has said it has to be throat, tonsils, or back of tongue. He also mentioned, as someone else said, there is a possibility that my body has gotten rid of it or it is just cells so small they are not showing up.
My 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.
I am so sorry about your husbands cancer prognosis. My husband has cancer of unknown primary. He too had tonsillectomy and neck dissection. We had been in a fog of uncertainty for most of this year. We went to Rochester MN.Mayo Clinic for one month. Although they didn’t find the primary we have no regrets about going and seeking a second opinion. He had a TORS surgery there. We returned home for suggested treatment. He is now doing radiation and chemotherapy. I hope you find more support for yourself and your husband. My heart goes out to you as I know how hard it is not to know.
My brother has metastatic squamous cell cancer found in his neck lymph node bx, surgery to bx tongue, tonsils, back of throat and area around the mass showed nothing and 5 negative lymph nodes. So back again to remove tonsils (maybe deep in tonsils?) And shave the tongue and back of.throat all turned out negative. PET scan and HPV negative. Next step is chemo and radiation to head and neck. They say it must be in this area. They say it's aggressive. They just can't find it. Anyone have this story that can advise? How will they know the radiation and chemo are working when they can't find any other signs of cancer?
Thanks.
I’m 71 F and awaiting my first oncology appointment. I’ve had CT & PET scans of my enlarged lymph node in my neck. Finally had surgery to remove it and do a second biopsy on it. Positive for metastatic p16+ squamous cell carcinoma, strong pancytokeratin and p40 positivity. All tests have shown a primary lesion is not identified. Only the lymph node lit up in the PET. So far my ENT has said it has to be throat, tonsils, or back of tongue. He also mentioned, as someone else said, there is a possibility that my body has gotten rid of it or it is just cells so small they are not showing up.
I have squamous cell carcinoma on the right side of my neck. They could not find my primary through the scans and biopsies either. In March I had a 7.5-hour surgery. They found it. It was very small spot on the back of my tongue. They removed it and 27 lymph nodes and 4 were cancerous, my tonsils, and several teeth. I finished radiation the end of May. My Dr. said that it wouldn't just go away.
I’m 71 F and awaiting my first oncology appointment. I’ve had CT & PET scans of my enlarged lymph node in my neck. Finally had surgery to remove it and do a second biopsy on it. Positive for metastatic p16+ squamous cell carcinoma, strong pancytokeratin and p40 positivity. All tests have shown a primary lesion is not identified. Only the lymph node lit up in the PET. So far my ENT has said it has to be throat, tonsils, or back of tongue. He also mentioned, as someone else said, there is a possibility that my body has gotten rid of it or it is just cells so small they are not showing up.
My 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.
@pacifcgirl60, there's a lot of information as well as misinformation circulating about ivermectin and its use as a treatment for cancer. It does not clear or cure cancer.
Ivermectin is used to treat river blindness (onchocerciasis), intestinal infection from threadworms (strongyloidiasis), and other kinds of worm infections. Ivermectin is an anthelmintic. It works by interfering with the nerve and muscle functions of worms, by paralyzing and killing them. (https://www.mayoclinic.org/drugs-supplements/ivermectin-oral-route/description/drg-20064397)
Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for cancer.
Ivermectin and other dewormers (anthelmintics) like fenbendazole can cause irreparable liver damage.
- Liver damage from Fenbendazole https://pubmed.ncbi.nlm.nih.gov/38706451/
Important
It is NOT safe to take ivermectin used in veterinary medicine. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.
Here's a clear and well-written article about repurposed drugs being researched for cancer.
It must be so hard to see your husband so sick with the treatments that are meant to treat him. While it is understandable that he has chosen to stop chemo and immunotherapy, you don't want to lose him so soon. We face a similar situation with my dad. I'm sure you have many questions. How are YOU doing? How are you feeling about all the decisions?
My 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.
While that is true most often, my tumor biopsy came back as “unspecified”. It was evaluated by 3 different labs/pathologists. Until the next ca reoccurred, when the tumor was the same makeup, but the cells made more sense in that area, they couldn’t determine the primary. They took a systemic treatment approach; treating the organ & affected area.
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Hi @jon6063 ,
Do you mind me asking if the 7.5 hour surgery was exploratory? My unknown primary hasn't showed up in 20 months but lots of scans etc. Had neck dissection and tonsillectomy then chemo/radiation. Latest PET shows uptake in mouth, but ENT's oral exam didn't find anything. Was it an ENT that did the surgery?
-
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Helpful -
Hug
2 ReactionsSurgery 8/12 for a right side tonsil removal, partial back of tongue, & possibly a neck dissection. 8/8 is the Tumor Board Meeting where they will decide for sure. The reasoning is to find the primary and remove it in surgery to possibly avoid radiation & chemo. A lot of ifs and maybes….. Also chance of ENE, the spread of cancer cells in my neck when they did the biopsy and later the removal.
-
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Helpful -
Hug
3 Reactions@judiroe, how did your oncology appointment go? Do you have a treatment plan?
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3 ReactionsI am so sorry about your husbands cancer prognosis. My husband has cancer of unknown primary. He too had tonsillectomy and neck dissection. We had been in a fog of uncertainty for most of this year. We went to Rochester MN.Mayo Clinic for one month. Although they didn’t find the primary we have no regrets about going and seeking a second opinion. He had a TORS surgery there. We returned home for suggested treatment. He is now doing radiation and chemotherapy. I hope you find more support for yourself and your husband. My heart goes out to you as I know how hard it is not to know.
-
Like -
Helpful -
Hug
5 ReactionsMy brother has metastatic squamous cell cancer found in his neck lymph node bx, surgery to bx tongue, tonsils, back of throat and area around the mass showed nothing and 5 negative lymph nodes. So back again to remove tonsils (maybe deep in tonsils?) And shave the tongue and back of.throat all turned out negative. PET scan and HPV negative. Next step is chemo and radiation to head and neck. They say it must be in this area. They say it's aggressive. They just can't find it. Anyone have this story that can advise? How will they know the radiation and chemo are working when they can't find any other signs of cancer?
Thanks.
-
Like -
Helpful -
Hug
2 ReactionsI have squamous cell carcinoma on the right side of my neck. They could not find my primary through the scans and biopsies either. In March I had a 7.5-hour surgery. They found it. It was very small spot on the back of my tongue. They removed it and 27 lymph nodes and 4 were cancerous, my tonsils, and several teeth. I finished radiation the end of May. My Dr. said that it wouldn't just go away.
-
Like -
Helpful -
Hug
4 ReactionsI’m 71 F and awaiting my first oncology appointment. I’ve had CT & PET scans of my enlarged lymph node in my neck. Finally had surgery to remove it and do a second biopsy on it. Positive for metastatic p16+ squamous cell carcinoma, strong pancytokeratin and p40 positivity. All tests have shown a primary lesion is not identified. Only the lymph node lit up in the PET. So far my ENT has said it has to be throat, tonsils, or back of tongue. He also mentioned, as someone else said, there is a possibility that my body has gotten rid of it or it is just cells so small they are not showing up.
-
Like -
Helpful -
Hug
2 Reactions@pacifcgirl60, there's a lot of information as well as misinformation circulating about ivermectin and its use as a treatment for cancer. It does not clear or cure cancer.
Ivermectin is used to treat river blindness (onchocerciasis), intestinal infection from threadworms (strongyloidiasis), and other kinds of worm infections. Ivermectin is an anthelmintic. It works by interfering with the nerve and muscle functions of worms, by paralyzing and killing them. (https://www.mayoclinic.org/drugs-supplements/ivermectin-oral-route/description/drg-20064397)
Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for cancer.
Ivermectin and other dewormers (anthelmintics) like fenbendazole can cause irreparable liver damage.
- Liver damage from Fenbendazole https://pubmed.ncbi.nlm.nih.gov/38706451/
Important
It is NOT safe to take ivermectin used in veterinary medicine. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.
Here's a clear and well-written article about repurposed drugs being researched for cancer.
- Separating fact from fiction: repurposed drugs in cancer treatment https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment
It must be so hard to see your husband so sick with the treatments that are meant to treat him. While it is understandable that he has chosen to stop chemo and immunotherapy, you don't want to lose him so soon. We face a similar situation with my dad. I'm sure you have many questions. How are YOU doing? How are you feeling about all the decisions?
-
Like -
Helpful -
Hug
5 ReactionsMy 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.
Thanks,
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4 ReactionsThanks for the info. That must be so very frustrating.
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2 Reactions