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Thread: Head & neck SCC of unknown primary — treatment options

  1. #71
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    1. Biopsy the hard to reach but highly active lymph node, by getting at it internally (through my bronchi, I think). Then they will compare the genetics of the tissue samples taken from the two different lymph nodes. This might help give them a sense of where the primary is/was located.

    2. Give me an endoscopy. I have no symptoms and my esophagus appeared 100% normal 1 1/2 years ago, but esophageal cancer can be asyptomatic and a lot can happen in 18 months.

    3. Bring my case to the tumor board on Wednesday to see if other oncologists might have more insight.

    The medical oncologist informed me that I would not be a candidate for immunotherapy because of my serious history of autoimmune disease (but I had already highly suspected that, so I was not disappointed.)

  2. #72
    Moderator Senior User IndyLou's Avatar
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    This seems like a very puzzling case, indeed, and it seems that they're not quite ready to put a label or a stage on this cancer. I suppose there's no harm in having the endoscopy in #2, above, but it feels like it might not be too revealing. How soon might the biopsy be scheduled?
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  3. #73
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    Hi IndyLou,

    Nothing has been scheduled yet. I think they are waiting till the Wednesday tumor board to proceed.

    I spoke to my new local oncologist today and she seemed totally perplexed by the new, more complicated biopsy that the Moffitt oncologists said they may do. She accused the Moffitt oncologists of “overthinking” things. Wow! I certainly don’t feel that way. I want them to do their utmost to find the primary.

    So I don’t know how much stock I should put in her opinion, but she looked at my CT scan report — the one with the three irregular nodules near the apex of my right lung and said that they seemed like scar tissue to her (not metastases or small primaries as the Moffitt oncologists were saying). Her reasoning was that the nodule that measured .6 x 1.4 cm should have shown up on the PET scan if there were any hypermetabolic activity, but the PET scan report said nothing had been found in the lungs.

    So now we have a mystery (what are these lung nodules?) inside another mystery (unknown primary).

    Would you happen to know the PET scan false negative rate for tumors/nodules around the size of mine — .6 x 1.4 cm?

  4. #74
    Moderator Senior User IndyLou's Avatar
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    Would you happen to know the PET scan false negative rate for tumors/nodules around the size of mine — .6 x 1.4 cm?
    Just did some casual searching, but PET scans seem to be fairly reliable for pulmonary lesions >= 1 cm. Smaller sized ones are more challenging, but I asked this question earlier in this thread. If I recall, your PET didn't reveal anything elsewhere in your body; perhaps it's possible these nodules in your lung are unrelated to the cancer.

    https://jamanetwork.com/journals/jam...article/193567

    I don't know if it matters so much that a primary tumor is found, though I'm sure that may be of more comfort to you. As my radiation oncologist told me, it was entirely possible that the primary tumor "burnt itself out," leaving only the metastases as a remnant.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  5. #75
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    About the primary — from what I have learned thus far, it does not really seem to matter if you have an unknown primary as long as you know if you are dealing with some kind of head and neck cancer. However, if you do not know if it is a head and neck cancer or an esophageal cancer or a lung cancer, it really matters because the treatments for these three are significantly different.

    I do not know the specifics on how they are different, but both the oncologists at Moffitt and the local oncologist I saw today emphasized this.

    This is not to say that the primary is findable. It may have indeed burned itself out. But it is important to know if it burned itself out in the lung, the esophagus or the head and neck area. Apparently, by far most squamous cell carcinomas of unknown primary are head and neck, but in rare circumstances this also happens in other organs too.

    So, long story short, the impetus for the continued search for the primary is coming 100% from the oncologists at this point, not from my need to know.

    Thanks for the info about the PET scan. My mind is slightly more at ease. I also went ahead and emailed the Moffitt oncologist in charge of my case with this same question (OMG, I cant believe you can email doctors there —- she even encouraged me to email her!!!). Hopefully, I will hear back soon.

 

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