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Thread: Squamous Cell LC with occult primary

  1. #61
    Moderator Top User IndyLou's Avatar
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    Melisande-

    As you go through your final treatment plan with your oncologist, I would ask them about nutrition throughout your treatment. With the majority of your tumors lower in the thorax, it's possible they won't apply radiation to your upper throat and palate areas. I think those areas are the worst when it comes to eating. Often times, these cancers can originate in the tonsils, then "burn out" as they metastasize elsewhere. In any case, what I'm trying to say is that it may be easier for you to eat (and take any supplements) with your treatment. Of course, you'll have to have that conversation with your oncologist first.

    If you both agree that nutrition could be an issue, you should then ask if they have a dietitian available, and discuss your concerns with them.

    Again, you are obviously quite the planner and thinker of a lot of different topics, but I would address the most important, first. The biggest question is how are they treating the cancer tumors you know you have? Surgery? Radiation? Chemo or targeted therapy? A combination of some of the above?

    Once you know that, then you can ask all those other questions you have. One day at a time.
    Age 54 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

  2. #62
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    Thanks, IndyLou!

    Yes, I am a planner. My husband used to call me his little cruise director, until I told him to knock it off. LOL. Sometimes it works out really well for me and I wind up averting disasters; sometimes I just waste time and energy.

    OK, I have appointments with both chemo and radiation oncologists at Moffitt this coming Friday.

    I am trying to think of questions I should ask when presented with the as-of-yet unknown treatment plans. Is it usually the case that you are presented with a treatment plan, given some time to think it over, then given a second appointment to discuss your reactions and questions? Or will this be it? Do I need all my potential questions ready for this meeting?

    For the past day or so, I have been mostly concerned about what the radiologist will present. I am concerned that since I have a HNSCC with unknown primary there will be a push to have a relatively broad radiation field. We don’t know where the primary is hiding, so let’s just radiate all tissue where it might be hiding (oh yes, and all the lymph nodes too).

    Apparently, there is no medical consensus as to the correct way to treat NHSCC of unknown primary. Some radiologists prefer this more radical approach. Others prefer a more limited approach. Apparently, there are no good, high quality studies that show the superiority of one approach over the other. If my radiologist turns out to be the “let’s radiate it all” type, would it be even worth it to argue with them and try to ask for a narrower field? If so, what arguments can I make? I am assuming they already know that there is no solid science backing up either option and it is just a matter of “in our experience at this clinic ...” If they say, well we have seen that it just works better to have a broad radiation field in cases like yours, I would want to ask well, what were their actual results? Do they keep track of their success rate? What constitutes success anyway? What is the actual goal of the radiation? To eliminate every last bit of malignancy? (Hoping this is it.)

    Do they keep track of their patients’ side effects? If so, do they have any long term follow up? What are the best and worst results that you have had? What is par for the course? Do you ever recommend anything different to someone who has HNSCC of unknown primary? Why?

    What techniques do you use to mitigate side effects? How about dosage? Is this standard? If not, on what does it depend? Is there any kind of monitoring that goes on while the treatments are in progress?

    What happens if there is a hurricane and Tampa is a disaster area (we are approaching peak hurricane season). Will treatments continue?

    How are the machines maintained and calibrated. Why shouldn’t I worry about a potential overdose?

    How bad do side effects have to get before you stop treatment early? Does this ever happen?

    I actually haven’t started doing the heavy duty research yet (doing my feeble best to have a little fun first), so there are probably some obvious questions I have missed. And they might be?

    Also, what to ask about the chemo? Should go back to thinking about this too.

  3. #63
    Moderator Top User IndyLou's Avatar
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    Apparently, there is no medical consensus as to the correct way to treat NHSCC of unknown primary. Some radiologists prefer this more radical approach. Others prefer a more limited approach. Apparently, there are no good, high quality studies that show the superiority of one approach over the other. If my radiologist turns out to be the “let’s radiate it all” type, would it be even worth it to argue with them and try to ask for a narrower field? If so, what arguments can I make? I am assuming they already know that there is no solid science backing up either option and it is just a matter of “in our experience at this clinic ...” If they say, well we have seen that it just works better to have a broad radiation field in cases like yours, I would want to ask well, what were their actual results? Do they keep track of their success rate? What constitutes success anyway? What is the actual goal of the radiation? To eliminate every last bit of malignancy? (Hoping this is it.)
    I believe there very well IS a medical consensus on how to treat CUP for HNSCC. There are established protocols, and it will be up to your primary oncologist to share their approach.

    In my case, I had a tumor in a lymph node, so it had metastasized from its primary location. When radiation was administered, the tumor itself received a very precise IMRT beam, but a region from the back of my throat, all the way south of my voice box was irradiated. It sounds crude, but the goal of the radiation is to eradicate any stray cancer cells that aren't killed with chemo or targeted treatment. There's no playing around, trying to miss this spot or avoid that one--you get one chance for treatment with radiation in this area--meaning this area won't be able to receive radiation again. I would advise against "arguing" or talking the radiation oncologist down from their approach...I would bet that whomever you're working with at (was it Moffitt?) has a pretty good idea and experience with treating this cancer.

    I'm almost certain that oncologists keep track of their success rate and results are entered in the SEER database. All the NCI doctors contribute to the overall body of knowledge, and all glean benefits from doing this.

    During your treatments, your oncologist, possibly a hematologist, and certainly nurses will monitor your progress weekly. The hematologist will especially be interested in your CBCs, and you'll need to be cleared to receive the next round of chemo or targeted therapy. The entire team will try to manage anything especially uncomfortable. for the first year, you'll have regular appointments as follow-ups, probably no less than on a monthly basis. I met with my ENT and my radiation oncologist in an alternating fashion, and the ENT would periodically do an endoscopy. Eventually, it appeared their work overlapped, so I cancelled the ENT visits after a while.

    One way you might approach the handling of your side effects is to ask the oncologist what you should expect. With your primary tumors lower in your thorax, effects from radiation may not be as bad. I don't know though, that's a question for your doctor. Once they describe what those side effects might be, THEN you can ask them how they might approach managing them. There's no sense in worrying about a side effect if the chances are small you might encounter it.

    As for disaster preparedness, I'm almost certain that Moffitt will have thought of how they handle hurricanes. From a facility standpoint, they're probably indestructible, with plenty of Unlimited Power Supplies. As to the calibration of the machines, I really think this is beyond the interest of most patients. These are sophisticated pieces of electro-mechanical wizardry, and they're maintained on a regular basis. You're certainly free to ask the oncologist, but I think your general concern has manifested into anxiety.

    As I mentioned, your oncologist and their staff will monitor you on a daily and weekly basis. You will have ample opportunity to express your aches, pains, discomforts, etc., and they will continue to monitor your blood and other vital signs.

    In my opinion, you still need to hear the full treatment plan, and discuss how/what chemo or targeted therapy will be used. If chemo or targeted therapy will be used, one question will be whether or not to install a port. There are a number of ways to do this, and there are some advantages to each. Personally, I chose NOT to have a port installed; I was having a feeding tube installed, and I simply didn't want that many "things" installed. It was a squeamish vanity.

    In hindsight, I had one regret with not having a port. On about the third week of chemo, I had begun to get a little dehydrated. When I arrived for my weekly infusion day, they took a blood sample, and prepped me for my infusion. Well, being dehydrated (from eating and drinking less), it was very hard for them to find a suitable vein in my arm. I ended up going through some very painful contortions that day with various nurses, as they attempted to install the IV. I was miserable.

    As for the specific chemo or targeted therapy, I would simply ask them why they're choosing a traditional chemo (carboplatin or cisplatin) over a newer targeted therapy or immunotherapy. Maybe they have a good answer. From there, you can talk about what to expect, and how to manage it.

    Continue to press on about nutrition, as the diet is very important. You might also discuss pain, and whether or not you should expect any with your treatment. My inner throat, mouth and gums became raw and inflamed during my treatment. I needed opioid medication to take the pain spike away. You might also ask about pain management, especially if you think you might not be able to tolerate some treatments.
    Age 54 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

  4. #64
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    Thanks for that long post. I totally get the “squeamish vanity” about having too many things installed. Totally get it.

    I wound up speaking with my nurse navigator for about 1/2 hour today. I’m getting spoiled. I’m not used to all this attention. I was the one who finally had to go.

    She told me that I was getting ahead of myself with my worrying and that they have not yet given up the search for my primary.

    Unfortunately, I am currently in the hospital for an entirely new, unrelated health problem — a weird heart arrhythmia that came on this afternoon and eventually became symptomatic. I thought it was afib (I have had one documented episode). But it was not a fib. It was an unspecified sinus arrhythmia. My heart would beat really slowly and forcefully at, say, 45 BPM, then jump suddenly up to 110 BPM, then jump to 70 bpm, then back to 50 BPM with random irregularities mixed in. At each speed switch there would be a longish pause and this is when I would have the brown out/feeling faint episodes. Lots of head scratching here, but will be seeing a cardiologist tomorrow. I told them I need to be out of here by Thursday to get to my Moffitt appointments on Friday morning.

    Tonight I am officially hating my body. I do my best to take care of it and what happens? It insists on breaking down in weird ways. It’s like I am stuck in a life-long group project with a slacker who will simply not do his work and I have no way of firing him.

  5. #65
    Moderator Top User IndyLou's Avatar
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    She told me that I was getting ahead of myself with my worrying...
    As a moderator in this forum, I sometimes don't say things as directly as I should...many nurses don't have that problem!

    I'm sorry to hear of your latest health episode--as if you don't have enough things to focus on in your life! I hope you get through this without difficulty. Please let me know if you think of any other questions in the meantime.
    Age 54 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

  6. #66
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    Well, I am back out of the hospital. It turns out that it didn’t actually start as afib briefly before turning into the weird sinus arrhythmia. Which is a real relief. I don’t actually have a new heart problem. (I knew I had afib.) My cardiologist wanted me to try a slightly different from of a medication I had been taking and apparently this new form doesn’t work quite as well (and/or I am letting myself be triggered by stress.) So, I am just going back to the old meds. Still, now I have cardio work up to compete too on an outpatient basis.

    Also when I was in the hospital, they did a chest X-ray and it showed abnormalities in the upper lobes on both sides. My pulmonologist told me it was “scar tissue” before saying that it is difficult to read an X-ray (so how does he know it was scarring?) and they needed to do a CT of my chest. But, ha ha!, I told him— I had just had a CT scan of my chest the previous day to rule out a lung primary. So now we are all waiting on those results. I will know this afternoon when I swing by the imaging place to pick up the report and images so I can hand deliver to Moffitt.

    The Moffitt oncologist told me he’d be shocked if they found the primary in my lungs after the negative PET/CT scan since squamous cell lung primaries are almost always large.

    However, if it is not that, I wonder what it could be. The pulmonologist was asking if I smoked (never) had a lung infection (not that I know of). I told him what the Moffitt oncologist said and he replied that any cancer can have an atypical form.

    Also, I have to say that my lymph node involvement does seem to point to something in the thorax rather than the H & N.

    At this point, I’m not even feeling stressed over this, just curious. So, there are still various options as to exactly what I have. But they all look like different flavors of bad. Just embracing the suckiness.

    Also, please don’t move me to another forum just yet. Please let my poor convoluted thread hang out in H & N unless I get another definitive diagnosis. It is tired of being moved around.

  7. #67
    Moderator Top User IndyLou's Avatar
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    I have no plans to move you, Melisande. You're welcome to hang out in H&N as long as you like!
    Age 54 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

  8. #68
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    I got the CT scan report back. Long story short it seems highly likely that I have 3 metastases to the lung. Either that or, in spite of never having smoked or had a serious chest infection, I just happen to have three areas of scarring in the area of my lungs closest to my involved lymph nodes (the right apex).

    I am assuming these are mets are not primary tumors because they are small (6mm, 6mm, and 6mmx14mm). I am thinking a lung primary would be a lot larger (this is what the oncologist at Moffitt said).

    The primary is still unknown.

    I am pretty sure there will be a tension between what I want (maximize the integral of health over time), vs, what the oncologists will probably want — go for the 5 year survival statistic. How to best manage this potential conflict?

    Also I was dismayed to learn that my health care professionals have not been forthcoming with me. No one told me that the CT scan of my chest was being done specifically to look for mets, not a primary lung tumor. When I mentioned the unlikeliness of finding the primary, they simply said nothing instead of disabusing me. Aaaarrrrrgggh! How am I to proceed when I can’t count on honesty from my team? When they traffic in vague promises and tactful silences.

    What to do?

  9. #69
    Moderator Top User IndyLou's Avatar
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    Melisande-

    I'm sorry to hear of your latest news--you previously had a PET scan--did that show any activity in the lungs? From the procedures you've described, it seems like your medical team is still assessing what your diagnosis is and now they're trying to stage it. Is it a head & neck cancer that's metastasized into the lungs, or a lung cancer that metastasized into your thorax? Either way, it seems like they might still have some work to do here...when do you next meet with your oncologist to discuss?

    Also, I find it curious that you're already anticipating the worst between you and the oncologist. You're going to become a self-fulfilling prophecy at this rate! Personally, I feel that because you're always thinking three steps ahead, you're missing out on what's being done in the present. There's no reason for you and your oncologist to NOT be on the same page. I'd advise that you take a deep breath, and simply ask them to take stock of what they know so far. Once you've done that, wait for their answer.

    Following their assessment, ask what they're recommending for treatment, and why. I don't think they're going to misrepresent anything, or opt for "statistics" over your well-being. One step at a time, one piece of data at a time. Once you understand them and what they're thinking, then you can pose some questions of your own.

    A diagnosis of cancer can be a humbling thing. Life doesn't always go according to our plans or wishes.
    Age 54 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

  10. #70
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    IndyLou,

    The meeting went much better than I expected, at least when it came to the relationship between myself and the head and neck medical and radiation oncologists. They gave me a thorough exam of my mouth, base of tongue, tonsils, nasopharynx, oropharynx, hypopharynx, larynx —- in short everywhere in my head and neck region and found nothing even slightly suspicious. Because of this and the fact that my lymph nodes were so low, they said that they highly doubted I had a head and neck tumor.

    The problem, however, is that neither of them had a good idea of what I actually did have. They said that if it was squamous cell lung cancer, it seemed like a very unusual case. They agreed with me that the “irregular nodules in the right apex” were almost certainly not scar tissue, but didn’t know if they were primary tumors or metastases. Unfortunately, they said that that was the most difficult area of the lung to biopsy. In fact, we could probably just forget about a biopsy there.

    They are planning on doing three things:

 

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