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Thread: Squamous Cell LC with occult primary

  1. #91
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    Hi again IndyLou,

    I think we are just going to choose between our local place and Moffitt at this point. It’s already been 2 1/2 months since I first felt the lump and it is going to take them at least another three weeks before I can start treatment. While I don’t think it is an emergency, I am not sure how much longer I should put off treatment. I did get a call back from the Sloan-Kettering group who wrote about stage III lung cancer with occult primary and said that they would see me. But I am not sure how much good it would do me at this point to fly all the way to NY for a consultation. I have read about the treatment these patients got and it doesn’t seem that different than what they are proposing here as a first line treatment. I mean there are only so many ways you can slice chemoradiation. If I want immunotherapy, it will be later anyway, not a first-line treatment.

    We do have one thing settled though— my diagnosis. I now officially have stage IIIb squamous cell lung cancer with occult primary. Everyone agrees. It is a rare presentation of lung cancer (there are only about 100 documented cases in the medical literature.) The good news is that the prognosis is much better than for stage IIIb NSCLC lung cancer with known primary— about 40% survival at 5 years (instead of 5% — the survival rate for stage IIIb NSCLC lung with known primary.) Also, the radiotherapy doesn’t have that much morbidity associated with it.

    Also, although I have a very unusual lung cancer, it will be treated like a H & N cancer of unknown origin, except that they won’t be irradiating any mucosal tissue— only the involved and neighboring lymph nodes.

    BTW, Moffitt is planning on 66-70 Gy as a radiation dosage. Is this bit aggressive ? Or does it sound normal?

  2. #92
    Administrator Top User lisa1962's Avatar
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    Hello Melisande

    Originally as a member than a moderator on our LC forum, now an Admin, i have been following your course thus far and want to offer to have your thread moved to our LC forum as you now have a definitive diagnosis. While your diagnosis differs slightly from others, it is still LC and the chemo agents used should be the same, thus reason for offering to move your thread.

    I can move it for you but will wait for your response.

    Lisa

  3. #93
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    Hi Lisa,

    Sure you can move the thread.

    Actually one of the remaining questions I have to resolve is getting the right chemo. I also have questions about immunotherapy (Imflinzi).

    The main issue I have now is that I would like to be treated at Moffitt (since it is a major cancer center), but I do not know exactly what kind of chemo they are going to offer me. They wanted me to go ahead with the making of the head/chest mold for the radiation before I had even had a chance to clarify this. I actually feel comfortable with a head and neck radiation oncologist treating me, but I am feeling unsure about the medical oncologist. I will be meeting with him Monday and hopefully getting the clarity I need to move forward. But I already know that he is a head and neck oncologist and do not know how much experience he has with chemo for lung cancer.

    The local medical oncologist I spoke with (this is actually my third local medical oncologist and the first one I really like — I am not seeing the first two anymore) told me that the chemo for head and neck and for lung are different. For example, taxol is used in lung, but not head and neck. I have no idea if this is actually true. It is just what he told me.

    Also, I am getting two different takes on the immunotherapy. The locals guys want me to have slightly less chemoradiation therapy (six weeks instead of seven with a smaller radiation field) then start on the immunotherapy right away before we even know how successful the chemoradiation has been. At Moffitt, they want me to have the full seven weeks of chemoradiation (still do not know the agents that will be involved) and radiate not just the involved nodes but also the nodes in between plus above and below. Then they want to hold off on the immunotherapy until after my 3 month CT scan if I do not indeed have NED.

    There is also a question as to whether or not to radiate two tiny nodules (6mm and 7mm) in the right upper lobe of my lung. The local guys want to radiate these nodules as a precaution (the nodules did not light up on the PET scan but it may have been because they were too small). At Moffitt, they said they will monitor these spots but only radiate them if they seem to be growing.

    I actually like the overall Moffitt plan better, but am kind of concerned about the chemo.

  4. #94
    Administrator Top User lisa1962's Avatar
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    I have moved your thread as per your authorization melisande. I did give it a new title so not to be confusing to our members.

    I am traveling at the moment but will get back to you on helping with questions, etc once I am near my computer and not typing on a cellphone.

    Our members here are extremely knowledgeable so check back for responses.

    Lisa

  5. #95
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    I saw my head and neck medical oncologist at Moffitt yesterday. He reiterated that I have an unusual case and that there were no protocols or standard of care in place. Also, no research on best outcomes. That said, he still recommended that I be seen by a thoracic oncologist at Moffitt. He said that their thoracic department was one of the best and that it is possible they have a little more expertise that could inform a treatment plan.

    So I have a new patient appointment with a thoracic medical oncologist set up for a week and a half from now.

    I really believe this is the right thing to do. But still I feel weary and anxious. I felt my lump in June and here is it September and I am starting all over (with a new patient appointment). It is so tiring. Also, I really feel like I need to get going with treatment ASAP.

    I asked the head and neck radiation oncologist if I could at least have the simulation (to set up the radiation) done while I am waiting for this other appointment. I was told that I will have to wait at least two weeks after the simulation to begin treatment.

  6. #96
    Moderator Senior User IndyLou's Avatar
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    Melisande-

    I'm sure it seems like a long journey already, but it looks like you're making some breakthroughs. You now have a diagnosis, and you can consider treatment options. Things will start to move a little more quickly now...you (and your doctors) had to rule out a lot before you could settle on what the tests were saying. It makes some sense now, at the apprehension some of your doctors had when they couldn't settle on a specific type of cancer.

    It sounds like your radiation will be very focused, and I wouldn't be too concerned about the dose. I think my radiation was in the 65-66 Gy range. I think the good news is that the location of your tumors will allow them to focus on the tumor, and not hit organs or tissue that will cause long-term damage.

    Best wishes, and I hope to hear of your progress.
    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. #97
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    Thanks IndyLou,

    I do have some good news. They are going to proceed with the simulation (for the radiation therapy) even before I have my appointment with the thoracic oncologist. So it looks like I may not be losing that much time. It also looks as if my radiation oncologist is going to be in the head and neck department and my medical oncologist is going to be in thoracic oncology. But maybe they will have me change radiation oncologists too?

    Also, I did omit a piece of good news from my last post. I had been liking the head & neck treatment plan more than the lung cancer treatment plan because the former had curative intent and the latter didn’t seem to. However, the head and neck medical oncologist told me he didn’t think that would be the case. He thought even though I was technically stage IIIb NSCLC (since I had a supraclavicular lymph node) the thoracic oncologists would still probably be treating with curative intent in my case since I had no primary tumor in the lungs and this simplified the situation.

    Also, can you or someone explain to me what is involved in a simulation? When I saw my radiation oncologist she started to explain the process to me, but we got side-tracked into other things (uncertainties as to diagnosis and optimal treatment plan) and we never got back to this. I heard something about a body mold and a warm liquid and me lying still for an hour, but that was it. Can someone describe in more detailed what it is like?

  8. #98
    Moderator Senior User IndyLou's Avatar
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    If I understand your question correctly, a simulation for radiation treatment is where they physically prepare you for the administration of radiation therapy. This milestone will mark the beginning of your official "treatment period," though no actual radiation is applied.

    With a simulation, they will take detailed measurements of your body and tumor location, likely using a CT-scan. They may make several temporary tattoos, or they may make a cast that fits over the part of your chest where radiation therapy will be applied. For you, it will likely be a cast of your upper chest (I wouldn't think they will apply the cast to any parts of your face--which is what I had.) That's probably why you'll need to lie there while the fibrous material dries. It only took me about 20 minutes, if I recall correctly. They may also make the marks on the cast, which tells them how to align the radiation beams during treatment.

    The cancer center will keep your cast (but may give it to you after you complete your treatments, if you like), and every time you return for your radiation treatments, they'll lie you down on your table, and clamp you in with your cast. They'll measure again with a CT-scan, and once everything is perfectly aligned, they'll begin the radiation. For me, the alignment portion was the longest; the radiation took exactly 350 seconds. At first, it was a little claustrophobic, having my face and neck covered. Even with perforations in the cast, I found the feeling to be unpleasant. That shouldn't be a problem for you.

    Do they still think a chemotherapy or immunotherapy will be used? Any idea what they're planning to do there? You're definitely making progress now!
    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. #99
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    The head and neck medical oncologist I spoke with said that he would give me Carbotaxol — Carboplatin & Taxol (Paclitaxel). He said it is what they use for NSCLC. (Do they use this combo for head & neck too?) So I am expecting the thoracic oncologist I see to offer the same thing. The question is how many infusions I will have. I think the standard for stage IIIb NSCLC is one weekly infusion for six weeks.

    It’s funny. I thought I was claustrophobic until I had an MRI where I had no problems at all. Then I realized that I actually have cleithrophobia which is the fear of being trapped (actually for me — trapped alone). I don’t think I would have any problem even with the mask because there is basically no way I would actually be trapped there indefinitely. My reasoning is that the machinery is too expensive to have a body stuck there for a long time. Also, I won’t be alone.

  10. #100
    Moderator Senior User IndyLou's Avatar
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    Cisplatin and Taxotere have both been used with H&N cancer treatment; carboplatin may have been used at one time or another. The protocols evolve over time, and with the way immunology drugs have emerged and have been tested in all sorts of cancer types, some of the older chemotherapies have been replaced.

    You have a positive attitude about your treatment; the mask for me during simulation was a breeze. I was not alone for that, but things were different once the treatments started. It wasn't necessarily a feeling of claustrophobic, but the feeling I couldn't move my head...maybe it was a "trapped" feeling as you described it. My favorite mind game during treatment was to pretend I was on a favorite golf course...I imagined I was playing the course, savoring each shot and each step. You may have different thoughts!
    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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