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Thread: Squamous Cell LC with occult primary

  1. #81
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    I think sometimes seeking a second opinion is a way of being in denial about the reality of one’s cancer. I only say this because when I first got the pathology report back and read “squamous cell carcinoma” and not “lymphoma”, my immediate response (and my husband’s immediate response) was: “seek a second opinion!” We didn’t actually get a second opinion on the pathology report, but I find it interesting that it was our very first response. It was like — please someone, anyone tell us this is not true!!!

    The H&N radiation oncologist did write back (via the nurse of course). She clarified that the pulmonary radiologists did see the nodules. It was just that they judged them benign (and in fact that is what the PET scan showed too). I still feel a little uneasy about them but am accepting their judgment for now.

    The radiation oncologist said that she did have experience treating lymph nodes in the thorax (although she did not say she had a similar case before).

    She said that she is reserving all discussion of treatment and prognosis until after I have (minor) exploratory head and neck surgery under full anesthesia.

    At the moment I am feeling pretty stressed out about this mainly because I feel that it is invasive and probably totally unnecessary in my case. She mentioned having my tonsils removed, etc. OK, I would go through with it if I were a head and neck cancer case. But I am not! My involved lymph nodes are nowhere near my tonsils and mostly not even in my neck. Besides, I am HPV negative and most tonsil cancers are HPV positive. And I already had two ENTs examine them and feel them making me gag and saying that they looked “great!” I don’t even know what else they are planning on doing. My radiation oncologist — the same one who is insisting I have this surgery — told me to my face with conviction just last week that I do not have a head and neck cancer. The head and neck medical oncologist I saw told me the same thing. Also, as I said in my previous post, the tumor board at our really good local hospital all agreed that the primary almost certainly came from below my collar bone. So why to I need the standard head and neck exploratory surgery?

    I am thinking it is because I happen to be treated by people in head and neck and this is just standard workup for head and neck cases, so I will get it too! Basically full-on CYA mode. Because you never know ... maybe there is a .01 percentage chance that a HPV negative tonsil cancer is causing the lymph nodes near my trachea to swell.

    Also, when she was discussing this with me on the phone last night, she sounded even more awkward, hemming and hawing.

  2. #82
    Moderator Senior User IndyLou's Avatar
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    It was like — please someone, anyone tell us this is not true!!!
    That's an interesting take on things...like, "who can I see about getting this diagnosis changed--where's the manager??"

    I will say that I've heard that benign lung nodules are quite common, though thrown in with everything else, I can see why they'd make someone uneasy.

    Exploratory surgery in this case is something that I have no experience with, so I have no opinion on whether or not it's worthwhile. Perhaps another member may have some wisdom they can share. I will say, your RO is not very reassuring, from how you described them.
    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. #83
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    I like that: “Where’s the manager?!?” That’s pretty much what we were thinking. LOL

    At this point I am thinking of seeking a second opinion from another major cancer center if only to give me some psychological leverage— to help me feel like I have a true choice and don’t necessarily have to jump when Moffitt says jump.

    Do you know which cancer centers are the best for H & N?

    I had hoped to use our good local hospital for this kind of psychological leverage, but I am less sure of what is going on with them now. The ENT/surgeon who called me last week (via his nurse, of course) seemed pretty jazzed about my case. But I think that he might have merely projected his excitement the rest of the tumor board, because I have not heard from whom he said I should have heard from and when I called him back, he seemed all head scratchy about it. So, I asked for the name and number of the radiation oncologist, so I could reach out to them. I did and still haven’t heard back. Then I did a little googling and finally realized that the person I was led to believe was a radiation oncologist at our best local hospital (the only one o would trust with cancer care) was actually a nurse practitioner at the second best hospital. The whole thing is so convoluted I don’t know what to make of it and it frankly is not inspiring confidence.


    It is becoming clear to me that even if I have presumptive lung cancer with an occult primary, I will still be treated by head and neck oncologists. I am not sure why this is the case, but I see it happening both at Moffitt and at my local hospital. At both places head and neck oncologists are saying you probably have a lung primary, but we’re going to treat you. I think it might be because the treatments for lung and head and neck are not that different (both use platinum-based chemo and radiation). One of the big differences with lung cancer is that in lung cancer treatment, radiation therapy is more difficult because there is a moving target (tumors/lymph nodes move as patients breathe), but I don’t need an expert to solve this problem for me since my nodes are not actually in my lungs.

  4. #84
    Moderator Senior User IndyLou's Avatar
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    Do you know which cancer centers are the best for H & N?
    I did a search on clinicaltrials.gov, using "SCCHN" and "Completed" as my criteria, just to find locations that have conducted H&N studies. Working in the pharmaceutical industry, I can tell you that we look for sites that are experienced, and have a lot of potential patients. These are some locations I found in the eastern portion of the US (some are no surprise) :


    • University of Pittsburgh
    • Memorial Sloan Kettering (NYC)
    • University of Maryland (Baltimore)
    • University of Texas MD Anderson Cancer Center (Houston)
    • Dana-Farber Cancer Institute (Boston)
    • University of Miami Sylvester Comprehensive Cancer Center
    • The Mayo Clinic (Rochester, MN)
    • Abramson Cancer Center of the University of Pennsylvania (Philadelphia)
    • Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (Baltimore)


    It was interesting--I saw Moffitt among some of the locations, but I wouldn't say they were prominently listed. I know that we've worked with them on a number of trials, but none were ever head & neck. It would still surprise me that with their reputation, they don't have someone on their staff with some H&N experience.

    Again, I was treated by a local hospital, here in Indianapolis. A radiation oncologist was my primary doctor, though a hematologist administered and oversaw the treatment of my cetuximab, and an ENT did surgery to remove my necrotic lymph node. All three doctors were in the same network, and collaborated throughout my treatment and recovery. It's a shame that your RO has not made you feel more assured and informed, but it does sound like they have some trepidation with your diagnosis.

    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. #85
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    Thanks for the info.

    I had the bronchoscopy with FNA biopsy today. I found it more difficult than the endoscopy. I am pretty sure I had a little intraoperative awareness. I remember something stuck in me and wanting to say I am awake, but I couldn’t. But oddly (thankfully) it somehow wasn’t that traumatic, just weird. The memory too is just weird, not traumatic.

    It took me a long time to get over the sedation (not enough, but also too much?) and I walked like a drunkard for a couple of hours afterwards. (I had to hang onto my friend.) Also cough and sore throat. And now I definitely have a fever. They told me to call them if it was over 101, but we don’t have a thermometer in the hotel room, so my friend went out to Walgreens to buy me one. (She is a great friend.)

    Also, I asked the doctor before the exam how likely he thought it was that this new biopsy would give some useful results. He said he would be very surprised if anything useful turned up. So depressing. I feel like they are just ticking this off the list. For them there is no downside to being as thorough as possible, but there definitely is a down-side for me.

  6. #86
    Moderator Senior User IndyLou's Avatar
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    I'm sorry to hear that you aren't feeling upbeat about your procedure, Melisande. Can you remind me again, what were they probing with the FNA--the tumors in your thorax region, or something else? I had an FNA performed on the tumor in my neck...local anesthesia only, and barely effective. Three separate, gouging probes into the side of my neck--I can still feel the pain of that today--six years out. Major swelling afterwards, too.

    It's nice to have a supportive friend through this. She may be really helpful as you progress into your treatments.
    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

  7. #87
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    Yes, there were FNAing one of my two paratracheal lymph nodes. So, yes, one of the ones in my thorax.

    Good news: I met with the surgeon today and she agreed that the exploratory surgery would be overkill. It seems that not everyone on the tumor board thought it was necessary. Apparently, some of my posterior pharyngeal wall lit up a tiny bit on the PET, but the vague lighting up didn’t correspond with any anatomical feature on the CT scan. So I let the surgeon scope my throat one more time. She said that she got a good look at the whole hypopharyngeal region except for one little band. She agreed that the tonsils and base of tongue looked entirely unsuspicious. So, that would mean that I would have to have general anesthesia just so they could look at this little band which they weren’t clear corresponded to anything on the PET and the CT scan. I think if the surgeon really thought it was important she would have pushed back more instead of just caving.

    The bad news: The surgeon carefully reviewed my PET scan and my previous CTs and MRIs and came to the conclusion that I have a potentially problematic hotspot in my left kidney. So now they are going to get the rental specialists involved. Oh joy! More testing!

    From my brief research, it looks highly unlike that the SCC primary is in the kidney. However, I do think it is possible that they have unearthed an entirely different cancer in my kidney. But the spot in the kidney that showed both on the PET and the CT was very small and hasn’t changed in two years. So if it is a second cancer, hopefully it is something I can deal with later.

  8. #88
    Moderator Senior User IndyLou's Avatar
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    I certainly hope this is a case of a false positive on the PET scan. I agree that I don't think renal cancer is an SCC, and it seems odd that you would experience metastases from your kidney to your thorax.

  9. #89
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    Today I had a consultation with a medical oncologist at a local hospital. He participated in the tumor board at which my local ENT presented my case. He was incredibly gung-ho about my case and he spoke with me (and my husband who came along) for over an hour. He, and apparently others on the tumor board, are convinced that I actually have stage IIIb non-small cell lung cancer with occult primary, not a head and neck cancer at all. He outlined a treatment plan that included 6 weeks of chemoradiation (he mainly spoke about the chemo part — I will be seeing the radiation oncologist there tomorrow), a week break, then a year of immunotherapy. His hypothesis is that the long-term immunosuppressive therapy I had a while unleashed the squamous cell carcinoma. He is ordering additional testing on the tissue to see if it has biomarkers suggestive of an immunosuppressive origin.

    Here is my current dilemma: I actually liked what this guy had to say a lot more than what I was hearing at Moffitt. And it’s not that I like the prognosis or treatment plan better — it’s because what he is saying makes sense. So, go with this team, right? Well, everyone local I have spoken with says go to a National Cancer Center, go to Moffitt, don’t go to these local guys, they aren’t real experts, etc.

    But my Moffitt experience has left me scratching my head. I haven’t given up with them yet. But so far they have not made a whole lot of sense to me. The radiation oncologist in the head and neck clinic tells me twice that I probably have lung cancer, and yet they are going ahead and treat me in the head and neck clinic. Maybe this will all begin to make sense when they give me a treatment plan soon. Then there is this surgeon suggesting that I have kidney cancer. It just seemed like such a reach. And there was their pushing of head and neck exploratory surgery, then their backing off when I protested. (But the medical oncologist I saw today wanted to do thoracic exploratory surgery, then caved as soon as I rejected that too.)

    Hopefully we will gradually gain some clarity here.

  10. #90
    Moderator Senior User IndyLou's Avatar
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    I understand your dilemma, Melisande. It DOES sound like your local hospital is at least attempting to make some sense of things. Any thoughts on where you might go from here? I think in the end, you should trust what makes the most sense to you. You have Moffitt nearby, but maybe there's another nationally-known center that might consider what your local cancer center is saying?
    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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