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Anyone have cancer with unknown primary?

Posted by rita8898 @rita8898, May 20, 2019

Anyone suffering from cancer with unknown primary?

Interested in more discussions like this? Go to the Cancer Support Group.

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wasserja | @wasserja | Sep 17, 2025

In doing some research, it appears that we are not allowed to share personal contact information. Depending on the outcome of the surgery, I suggest pursuing this further at an academic medical center or cancer institute with a strong head and neck program.

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 17, 2025
In reply to @wasserja "In doing some research, it appears that we are not allowed to share personal contact information...." + (show)
Profile picture for wasserja @wasserja

In doing some research, it appears that we are not allowed to share personal contact information. Depending on the outcome of the surgery, I suggest pursuing this further at an academic medical center or cancer institute with a strong head and neck program.

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@wasserja

That is an excellent suggestion to pursue a consultation at an academic medical center or cancer institute with a strong head/neck program. How did you go about finding such a medical center?

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lizfuller | @lizfuller | Sep 17, 2025
In reply to @lgettys "Hello, my husband was recently diagnosed with head and neck cancer with an unknown primary as..." + (show)
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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?

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hi, my initial diagnosis was unknown primary. they thought it metastisized from somewhere (that they couldn't find) to my neck. I had vocal cord paralysis and needed a thyroidectomy and partial neck dissection of lymph nodes on the right side. recovery from the surgery was not difficult. after healing from the surgery I had targeted radiation on my neck. by the end of the radiation my skin had broken, swallowing became difficult and took some time to heal. eventually some small nodes showed up in my lungs and they felt this was where the cancer originated and targeted the chemo/immunotherapy treatment accordingly. tumors returned in my neck and my airway narrowed and I needed a trachestomy.

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katgob | @katgob | Sep 18, 2025

Talking to each other can be done with the direct message at the top with the envelope. I feel like I read that question above.

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wasserja | @wasserja | Sep 18, 2025
In reply to @hopeful33250 "@wasserja That is an excellent suggestion to pursue a consultation at an academic medical center or..." + (show)
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@wasserja

That is an excellent suggestion to pursue a consultation at an academic medical center or cancer institute with a strong head/neck program. How did you go about finding such a medical center?

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Where in the country do you live?
I was recommended to several sites with expertise in head and neck cancer programs including Duke Cancer Institute, Dana Farber Cancer Institute, the University of Chicago and MD Anderson. You can also do a google search on best head and neck cancer programs.

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judiroe | @judiroe | Sep 18, 2025
In reply to @colleenyoung "@judiroe, how did your oncology appointment go? Do you have a treatment plan?" + (show)
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@judiroe, how did your oncology appointment go? Do you have a treatment plan?

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9/18 I have now had my tonsil removed, base of tongue biopsy, & neck dissection. All are clear of cancer cells. With no primary ever found, I will be watched. No radiation at this time.

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2025
In reply to @judiroe "9/18 I have now had my tonsil removed, base of tongue biopsy, & neck dissection. All..." + (show)
Profile picture for judiroe @judiroe

9/18 I have now had my tonsil removed, base of tongue biopsy, & neck dissection. All are clear of cancer cells. With no primary ever found, I will be watched. No radiation at this time.

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I appreciate your update, @judiroe. That is good news that no cancer cells were found. How long a recovery do you expect from this surgery?

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judiroe | @judiroe | Sep 19, 2025
In reply to @hopeful33250 "I appreciate your update, @judiroe. That is good news that no cancer cells were found. How..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

I appreciate your update, @judiroe. That is good news that no cancer cells were found. How long a recovery do you expect from this surgery?

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I’m doing fine after the neck dissection. I went in today and needed a needle aspiration as my neck filled with fluid. I read that the numbness may last 6 months or longer. Otherwise doing great. I have an Oct 23rd follow up and then a CT scan in December.

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 19, 2025
In reply to @wasserja "Where in the country do you live? I was recommended to several sites with expertise in..." + (show)
Profile picture for wasserja @wasserja

Where in the country do you live?
I was recommended to several sites with expertise in head and neck cancer programs including Duke Cancer Institute, Dana Farber Cancer Institute, the University of Chicago and MD Anderson. You can also do a google search on best head and neck cancer programs.

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I do not have a head/neck cancer, @wasserja. My cancer has been located in a different area. I do go to a university medical school in my area for treatment and follow up.

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wasserja | @wasserja | Sep 19, 2025

Sorry with the confusion over who I was responding to.

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