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Thread: Squamous Cell LC with occult primary

  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.

  6. #76
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    Well, they did the upper GI endoscopy and found nothing. 100% normal. So it’s not esophageal cancer. Maybe this means it’s lung cancer? Hard to know.

    I was suppose to hear back from the Moffitt tumor board this afternoon about a treatment plan and have heard nothing. Trying not to get impatient or depressed

  7. #77
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    I did finally hear back from the Moffitt oncologist.

    Apparently the pulmonologist oncologists took a look at my CT scan of the chest and where my local radiologist found “three irregular nodules” in the apex of my right lung which could have been either metastases, pulmonary primaries, or scar tissue, they found “nothing.” Huh? I asked the HN radiation oncologist I was speaking with if “nothing” meant “nothing suspicious” and she said “no, nothing at all.” How can this be? I can understand if one radiologist doesn’t agree with the interpretation of the other, but to have one radiologist describe the nodules in detail (including size, shape, exact location in the lung) then to have other radiologists say there is simply nothing there? Are they saying the first radiologist was hallucinating? Could they have actually meant nothing suspicious? Could I have gotten a copy of the wrong images given to me by mistake?

    In other news, the same head and neck radiation oncologist who told me last week that she really did not think I had a head and neck cancer told me yesterday that:

    1) the pulmonary radiologists didn’t find anything on the CT-scan (like I said above)
    2) that my lymph nodes strongly suggested a lung primary
    3) that she (not a pulmonary radiation oncologist) could “still” give me a treatment plan

    The treatment plan: Irradiate the involved lymph nodes, other lymph nodes at that level (lowest level of neck and levels in my upper thorax), then irradiate the lymph nodes one level above and one level below that and finally add some adjuvant chemo.

    When she talked about the treatment plan, she sounded awkward and hesitant. She couldn’t tell me anything about the goal of the treatment plan (are we going for a cure or not). She didn’t say anything like: It’s true we can’t find the primary, but we have treated cases like yours before with success.”

    I know that there is a lot of morbidity associated with HN cancers and that one of the reasons people put up with all the morbidity is that HM cancers are highly curable. I am concerned that I am being asked to deal with all the morbidity of a HN cancer without the same hope for a cure (if it is a matter of presumptive lung cancer, then it would be considered stage IIIb and not curable).

  8. #78
    Moderator Senior User IndyLou's Avatar
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    Melisande-

    Yours is a most puzzling case. Did the tumor board at Moffitt meet yesterday, and if so, did they have any recommendations? I am still hanging on the fact that the lung nodules (which I understand can be common), did not show any uptake on the PET scan. That would be consistent with them being "nothing."

    I would have a frank discussion with your oncologist and ask them specifically what the goal of your treatment (radiation + chemo) will be. While I don't often recommend them, this might be a case for a second opinion. While it may be a challenge to track down, I would ask your primary oncologist to also explain the conflicting reports from your radiologists.
    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

  9. #79
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    Yes, my H&N radiation on oncologist called after the tumor board meeting. I think it was at the meeting they decided I was not a case for the pulmonologist and who ever else takes care of lung cancer patients. My impression was that the ball was bounced back into her court (and she wasn’t particularly happy to see it returned).

    I just sent the H&N radiation oncologist a follow-up email in which I asked her again about the CT scan, asked her to tell me whether or not the treatment plan we discussed on the phone had a curative intent and, if so, what “curative” meant. I also asked her to tell me how much experience she had treating patients with involvement in the thorax and whether or not she had treated a similar case before. All fair questions, I think.

    Why do you not recommend that people get second opinions? Is it just that it confuses the issue sometimes and takes too much time?

    I also got a very pleasant surprise phone call today from my local ENT/surgeon whom I only saw once at the end of July right before my biopsy. Apparently, he took the initiative to bring my case before the tumor board of our best local hospital. They have discussed my case, are planning on doing additional testing on my biopsy tissue and had some questions and recommendations for me. I talked to him a while of the phone and he said that the consensus of the local tumor board is that the cancer came from somewhere below my clavicle, not above. He said that the radiation on oncologist there wanted to speak with me and I said sure!

    So, I might already be getting another opinion. In any case, I am feeling more hopeful and less crazy/depressed again.

  10. #80
    Moderator Senior User IndyLou's Avatar
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    Why do you not recommend that people get second opinions? Is it just that it confuses the issue sometimes and takes too much time?
    Yes, exactly. I think if you have a "common" cancer, and you're dealing with a reputable oncologist/cancer center, I think second opinions are more confusing and can be information overload to an already stressed patient. The protocols for many cancers are already largely determined, so once the type of cancer is determined and is staged, treatment is usually straightforward.

    This is my opinion only.

    I do believe your questions to your oncologist were very appropriate...I couldn't state them any better. I hope you get a timely and clear reply.

    What a pleasant surprise to hear from your ENT. I would be very interested to hear what they say. It seems they're more interested in you than the radiation oncologist!

    I hope you hear some good news soon!
    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

 

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