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.
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.
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.
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.
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 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?
Hello, my husband was recently diagnosed with head and neck cancer with an unknown primary as the PET scan didn’t show anything definitive. He has swollen lymph nodes on one side of his neck, but no other symptoms. After consultations with the oncologist and radiation oncologist they talked about a plan of radiation paired with chemo (Cisplatin) and sounded pretty confident about that plan being successful. Then after they did a PET scan, they changed direction and sent him back to the ENT who said they decided to do surgery to remove the enlarged lymph nodes, possibly the tonsils and while they are in there, take samples to biopsy from all the high risk areas - tonsils, back of throat, and base of tongue with the hope of finding the source so they can better target the radiation. He also used the term neck dissection which when googled sounds pretty serious/scary. The surgery is tomorrow and we are pretty scared since so much is unknown. I can’t help wondering if we should have gotten a second opinion, but since things have moved so quickly, I didn’t think delaying the surgery would be a good idea. Anyone else have knowledge of the procedure to remove the lymph nodes in the neck? What was the recovery like?
Hello, my husband was recently diagnosed with head and neck cancer with an unknown primary as the PET scan didn’t show anything definitive. He has swollen lymph nodes on one side of his neck, but no other symptoms. After consultations with the oncologist and radiation oncologist they talked about a plan of radiation paired with chemo (Cisplatin) and sounded pretty confident about that plan being successful. Then after they did a PET scan, they changed direction and sent him back to the ENT who said they decided to do surgery to remove the enlarged lymph nodes, possibly the tonsils and while they are in there, take samples to biopsy from all the high risk areas - tonsils, back of throat, and base of tongue with the hope of finding the source so they can better target the radiation. He also used the term neck dissection which when googled sounds pretty serious/scary. The surgery is tomorrow and we are pretty scared since so much is unknown. I can’t help wondering if we should have gotten a second opinion, but since things have moved so quickly, I didn’t think delaying the surgery would be a good idea. Anyone else have knowledge of the procedure to remove the lymph nodes in the neck? What was the recovery like?
I have had the surgeries your husband is going to have, but not all at once. Lymph node biopsy was positive for SCC. Then removal of that lymph node in July was HPV+ and no spread to surrounding tissue. In August removed my tonsil & base of tongue biopsy. Both negative. Then last week the neck dissection to see if any other lymph nodes show microscopic cancer cells. The neck dissection has not been a bad recovery at all. Just a bit of a stiff neck & swelling . Now the tonsillectomy was a whole different story. Ouch! Days 5-8 after surgery were terrible. My Dr is only working on my right side. They said it doesn’t jump sides & recovery would be easier. I am 71F so age is a factor for splitting up the surgeries. Also we thought each one would produce the primary. Nothing yet though. If the neck dissection comes back negative, I move to a watch status. No radiation therapy for now.
Hello, my husband was recently diagnosed with head and neck cancer with an unknown primary as the PET scan didn’t show anything definitive. He has swollen lymph nodes on one side of his neck, but no other symptoms. After consultations with the oncologist and radiation oncologist they talked about a plan of radiation paired with chemo (Cisplatin) and sounded pretty confident about that plan being successful. Then after they did a PET scan, they changed direction and sent him back to the ENT who said they decided to do surgery to remove the enlarged lymph nodes, possibly the tonsils and while they are in there, take samples to biopsy from all the high risk areas - tonsils, back of throat, and base of tongue with the hope of finding the source so they can better target the radiation. He also used the term neck dissection which when googled sounds pretty serious/scary. The surgery is tomorrow and we are pretty scared since so much is unknown. I can’t help wondering if we should have gotten a second opinion, but since things have moved so quickly, I didn’t think delaying the surgery would be a good idea. Anyone else have knowledge of the procedure to remove the lymph nodes in the neck? What was the recovery like?
Hello @lgettys and welcome to Mayo Connect. I see that @judiroe, has shared a lot of her experiences with you already. I hope that your husband's surgery goes well. Is the surgery today?
In your post, you mentioned, " I can’t help wondering if we should have gotten a second opinion..." Please be aware that even after this initial surgery, you can still seek a second opinion regarding follow-up procedures and treatment plans. I have had three surgeries for a rare form of cancer (not the same as your husband's), and my first two surgeries were done at a local hospital with an oncologist. When I reached the point where I needed a third surgery, I drove a distance to a university medical school for another opinion on the type of surgery needed. For me, it was a good decision, and my hospital stay and recovery time were lessened.
If you decide, down the road, that you would like another opinion, I recommend that it be at a well-known cancer center, with a doctor who is highly experienced in this type of cancer treatment. Mayo Clinic has three locations and would be a good place for a second opinion (here is a link with information about appointments http://mayocl.in/1mtmR63.) If an appointment at Mayo is not an option, for any reason, then another research-oriented medical center would be a good option.
I understand that the beginning of a cancer journey is confusing as well as frightening and I appreciate you reaching out for information and support. You will find a lot of encouragment and support on Connect. Will you post again with any questions or concerns, and let me know how your husband is doing post-surgery?
I had a similar diagnosis several years ago and had a “biopsy” done at an AMC with a strong head and cancer program. My biopsy turned into a 6 hour surgery and they did a neck dissection removing more than 30 lymph nodes and my sub-mandibular gland which was the primary cancer site. They followed this up with aggressive chemo and radiation. It was not easy, but I got through it all. I have since had constant surveillance and have done much better than predicted.
I would be pleased to discuss this with you, but not sure about the protocol for making contact. I have learned a great deal and can be helpful. Let me know if this is desirable and I can try to figure out how to connect.
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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.
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7 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.
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Helpful -
Hug
4 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.
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6 Reactions@judiroe, how did your oncology appointment go? Do you have a treatment plan?
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3 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.
-
Like -
Helpful -
Hug
4 ReactionsHi @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?
-
Like -
Helpful -
Hug
2 ReactionsHello, my husband was recently diagnosed with head and neck cancer with an unknown primary as the PET scan didn’t show anything definitive. He has swollen lymph nodes on one side of his neck, but no other symptoms. After consultations with the oncologist and radiation oncologist they talked about a plan of radiation paired with chemo (Cisplatin) and sounded pretty confident about that plan being successful. Then after they did a PET scan, they changed direction and sent him back to the ENT who said they decided to do surgery to remove the enlarged lymph nodes, possibly the tonsils and while they are in there, take samples to biopsy from all the high risk areas - tonsils, back of throat, and base of tongue with the hope of finding the source so they can better target the radiation. He also used the term neck dissection which when googled sounds pretty serious/scary. The surgery is tomorrow and we are pretty scared since so much is unknown. I can’t help wondering if we should have gotten a second opinion, but since things have moved so quickly, I didn’t think delaying the surgery would be a good idea. Anyone else have knowledge of the procedure to remove the lymph nodes in the neck? What was the recovery like?
-
Like -
Helpful -
Hug
2 ReactionsI have had the surgeries your husband is going to have, but not all at once. Lymph node biopsy was positive for SCC. Then removal of that lymph node in July was HPV+ and no spread to surrounding tissue. In August removed my tonsil & base of tongue biopsy. Both negative. Then last week the neck dissection to see if any other lymph nodes show microscopic cancer cells. The neck dissection has not been a bad recovery at all. Just a bit of a stiff neck & swelling . Now the tonsillectomy was a whole different story. Ouch! Days 5-8 after surgery were terrible. My Dr is only working on my right side. They said it doesn’t jump sides & recovery would be easier. I am 71F so age is a factor for splitting up the surgeries. Also we thought each one would produce the primary. Nothing yet though. If the neck dissection comes back negative, I move to a watch status. No radiation therapy for now.
-
Like -
Helpful -
Hug
3 ReactionsHello @lgettys and welcome to Mayo Connect. I see that @judiroe, has shared a lot of her experiences with you already. I hope that your husband's surgery goes well. Is the surgery today?
In your post, you mentioned, " I can’t help wondering if we should have gotten a second opinion..." Please be aware that even after this initial surgery, you can still seek a second opinion regarding follow-up procedures and treatment plans. I have had three surgeries for a rare form of cancer (not the same as your husband's), and my first two surgeries were done at a local hospital with an oncologist. When I reached the point where I needed a third surgery, I drove a distance to a university medical school for another opinion on the type of surgery needed. For me, it was a good decision, and my hospital stay and recovery time were lessened.
If you decide, down the road, that you would like another opinion, I recommend that it be at a well-known cancer center, with a doctor who is highly experienced in this type of cancer treatment. Mayo Clinic has three locations and would be a good place for a second opinion (here is a link with information about appointments http://mayocl.in/1mtmR63.) If an appointment at Mayo is not an option, for any reason, then another research-oriented medical center would be a good option.
On Mayo Connect, there is a support group for Head and Neck Cancer that might be helpful to you. Here is the link to those discussions: https://connect.mayoclinic.org/group/head-neck-cancer/
I understand that the beginning of a cancer journey is confusing as well as frightening and I appreciate you reaching out for information and support. You will find a lot of encouragment and support on Connect. Will you post again with any questions or concerns, and let me know how your husband is doing post-surgery?
-
Like -
Helpful -
Hug
3 ReactionsI had a similar diagnosis several years ago and had a “biopsy” done at an AMC with a strong head and cancer program. My biopsy turned into a 6 hour surgery and they did a neck dissection removing more than 30 lymph nodes and my sub-mandibular gland which was the primary cancer site. They followed this up with aggressive chemo and radiation. It was not easy, but I got through it all. I have since had constant surveillance and have done much better than predicted.
I would be pleased to discuss this with you, but not sure about the protocol for making contact. I have learned a great deal and can be helpful. Let me know if this is desirable and I can try to figure out how to connect.
-
Like -
Helpful -
Hug
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