Negative NavDx Pre Treatment HPV16 Squamous Cell Cervical Lymph Node

Posted by ja963 @ja963, Aug 6 4:04pm

Has anyone had a Negative NavDx Pre Treatment of HPV16 Squamous Cell Cervical Lymph Node.?
As well as unknown primary source?
If you the primary source was "known", feel free to answer.

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Hello . Yes. My husband Joe has CUP. He had a negative NavDX as well. When we went to Mayo they explained that a negative NavDx is not definitive, just a snap shot. CUP puts you into a fog of uncertainty that is very difficult road to navigate. I am not sure where you are in your journey, we are six months in. Joe had 3 surgeries and Joe is halfway through his chemotherapy and radiation. We feel confident in our doctors here in Georgia, thanks to going to Mayo for a second opinion. Wish you as much clarity’s on your journey as it is very challenging.

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Profile picture for maryannecrawford @maryannecrawford

Hello . Yes. My husband Joe has CUP. He had a negative NavDX as well. When we went to Mayo they explained that a negative NavDx is not definitive, just a snap shot. CUP puts you into a fog of uncertainty that is very difficult road to navigate. I am not sure where you are in your journey, we are six months in. Joe had 3 surgeries and Joe is halfway through his chemotherapy and radiation. We feel confident in our doctors here in Georgia, thanks to going to Mayo for a second opinion. Wish you as much clarity’s on your journey as it is very challenging.

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Thank you for the response. Yes, CUP does make things a bit difficult. (Clear as mud)I had TORS and neck dissection in Jan. 2025. Pre treatment: PET/CT, CT, biopsy of lymph node, scopes of all reachable anatomy, and NavDx. No positive findings in oropharynx, but positive findings for Lymph Node on PET/CT, CT and biopsy(pre surgical and post surgical). So right now I am just being “observed” with a pending NavDx test, which is why I am asking about others who have had a negative NavDx from the get go.

My surgeon did not go too much explaining the negative findings, just kind of glad it was negative, and was dealing with all the fun stuff that comes with surgery.

have read a few other posts and without going in to the details, it seems that the HPV can integrate itself into the tumor DNA, and that is why it comes up negative.

I also found this you tube video with Dr. Mihir Patel, surgeon, and he also briefly mentioned that the cancer “transitions” from the oropharynx and into the neck. Sooo, that might be the reason we don’t see the positive NavDx?

Did your docs go in to explaining the negative NavDx finding? Other than it just being not definitive?

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Hello,
The doctors at Mayo Clinic said that NavDX test only give a what they described as a test they didn’t rely on too much for what Joe has. They could tell from the tumor sample that his cancer was aggressive. Both Mayo and AU pushed for chemo and radiation. 2 more weeks left! Best to you. MAC

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I have HPV+ SCC of unknown origin also. PET showed only one lymph node affected. A month ago I had the lymph node removed. Pathology showed no spread beyond the lymph node wall. My NavDX came back negative today. Tomorrow I am having surgery to remove the tonsil and base/rear of tongue on that side removed. The Dr is confident that he will be able to find the primary through pathology while we are in surgery. If he does I may be able to avoid radiation.

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I had back of tongue HPV-26 squamous cell carcinoma with one node involvement. But my NavDX test, at time of diagnosis, was in the thousands, not negative. I don’t know if my experience could be helpful to you but would be glad to share information if it could assist you.
My thoughts and prayers for your successful recovery.

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Profile picture for judiroe @judiroe

I have HPV+ SCC of unknown origin also. PET showed only one lymph node affected. A month ago I had the lymph node removed. Pathology showed no spread beyond the lymph node wall. My NavDX came back negative today. Tomorrow I am having surgery to remove the tonsil and base/rear of tongue on that side removed. The Dr is confident that he will be able to find the primary through pathology while we are in surgery. If he does I may be able to avoid radiation.

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My thoughts and prayers for a successful surgery and recovery! Best wishes

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Profile picture for judiroe @judiroe

I have HPV+ SCC of unknown origin also. PET showed only one lymph node affected. A month ago I had the lymph node removed. Pathology showed no spread beyond the lymph node wall. My NavDX came back negative today. Tomorrow I am having surgery to remove the tonsil and base/rear of tongue on that side removed. The Dr is confident that he will be able to find the primary through pathology while we are in surgery. If he does I may be able to avoid radiation.

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Please let us know how you are doing. Joe has been doing standard 7 weeks radiation with chemotherapy once a week. He has 2 weeks left. Radiation takes 10 minutes, chemotherapy 6 hours. Due to the fact that he had tonsillectomy , neck dissection with tumor removal and TORS they have been able to tailor radiator to a very small area. It has gone much better than expected. He gets chemo brain/ fog for a few days , he is tired but didn’t lose his sense of taste until this week. We can see the end. Hope this helps.MAC andJAC

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Profile picture for 4dogsrental @4dogsrental

I had back of tongue HPV-26 squamous cell carcinoma with one node involvement. But my NavDX test, at time of diagnosis, was in the thousands, not negative. I don’t know if my experience could be helpful to you but would be glad to share information if it could assist you.
My thoughts and prayers for your successful recovery.

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Looking for those that had a negative NavDx pre-treatment. But just curious, were there any positive findings (PET/CT, CT or biopsy, endoscopy) in the back of the tongue?
Thank you for thoughts and prayer. Can't get enough of those.

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Profile picture for judiroe @judiroe

I have HPV+ SCC of unknown origin also. PET showed only one lymph node affected. A month ago I had the lymph node removed. Pathology showed no spread beyond the lymph node wall. My NavDX came back negative today. Tomorrow I am having surgery to remove the tonsil and base/rear of tongue on that side removed. The Dr is confident that he will be able to find the primary through pathology while we are in surgery. If he does I may be able to avoid radiation.

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Sounds like a similar situation to mine. I just had both dissection and TORS done at the same time. When they did the PET scan (or any other tests) where they any positive finding of your tonsil or back of the tongue?

For me the only positive finding was that my right tonsil "lit up" a little more on the right than the left, but from what the radiologist interpreted and my readings online, that is not clinically significant. Negative CT scan for tonsil and tongue, and when I was scooped during surgery, no positive findings.

The biopsy of my right tonsil from surgery "negative for infiltrative carcinoma" and "Actinomyces" (sort of an inflammation)

So still unknown origin. Would be interesting to see what they find during your surgery.

Eating will be "difficult", just have to be creative on what you can eat, and yes, pain meds are helpful prior to eating. It does get better, at least for me it did.

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Profile picture for ja963 @ja963

Sounds like a similar situation to mine. I just had both dissection and TORS done at the same time. When they did the PET scan (or any other tests) where they any positive finding of your tonsil or back of the tongue?

For me the only positive finding was that my right tonsil "lit up" a little more on the right than the left, but from what the radiologist interpreted and my readings online, that is not clinically significant. Negative CT scan for tonsil and tongue, and when I was scooped during surgery, no positive findings.

The biopsy of my right tonsil from surgery "negative for infiltrative carcinoma" and "Actinomyces" (sort of an inflammation)

So still unknown origin. Would be interesting to see what they find during your surgery.

Eating will be "difficult", just have to be creative on what you can eat, and yes, pain meds are helpful prior to eating. It does get better, at least for me it did.

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Yes we are similar. My Dr decided to be less aggressive today. He only took the tonsil and a did base of tongue biopsies. Did not use TORS. These new biopsy results will guide us when we get results in 5 or so days…We may find a few cells to call a primary or never find a primary.

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