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Thread: Husband has Neck Cancer

  1. #11
    Moderator Senior User IndyLou's Avatar
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    Hi, Lydia-

    I'm sorry to hear about your situation and your husband's cancer. I too, had a cancer of unknown primary, though my secondary tumor was in a lymph node in my orpharyngeal area. I also underwent 35 days of IMRT radiation, and a weekly dose of cetuximab. The treatment worked fantastically, though I admit the radiation was harsh.

    I won't sugar-coat it, there will be discomfort, but the discomfort can be managed. Believe it or not, they have made strides in cancer research--the radiation they apply is much more precise, and in many cases, they can avoid a lot of permanent damage to salivary glands and other organs. Although I initially experienced some dry mouth and difficulty swallowing, my taste and eating ability improved over time. Almost 5 years out from my initial diagnosis, my eating ability and mouth/swallow functions are probably close to 95% of what they were. It's a slightly new "normal," but it's tolerable.

    There are many other suggestions I can make. If you like, please give me a little more background about your husband and his cancer. Is he generally healthy, does he know what caused his cancer? What is his specific treatment plan? Have his doctors or medical team suggested a feeding tube? How about pain management?

    Please let me know if you have any further questions or concerns.
    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

  2. #12
    Administrator Top User lisa1962's Avatar
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    Hello lydia777,

    Sorry to hear of your husbands complicated diagnosis. I just wanted to let you know that I have merged your other thread within the Worried Forum to this thread. It helps our members communicate better if all the information is in one place and seeing what lead up to the diagnosis.

    While I have no real knowledge to offer regarding head and neck specific cancers, I can say I do have a friend who just recently finished up radiation for tongue cancer. It was not easy for him and at times painful but he was able to get through it and finally able to enjoy things without having the constant pain or burning..

    Lisa

  3. #13
    Newbie Regular User
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    Hi po18guy - Perspective and taking things one at a time is very important and super easy to forget.

    Hi IndyLou - He is generally healthy otherwise. As for the cancer, we still don't know what caused it. The only facts we know are that it's squamous cell carcinoma and his tonsils, adenoids, and nasopharynx came back from biopsy w/o any malignancy. He has a potential teeny tiny tumor on his tongue base (Dr. felt it during surgery, lit on PET, and saw it when he scoped in the office) and a salivary gland or lymph node at the front under his jaw that lit on the PET. They won't know which it is until they get in there. He only knew anything was off bc of the large mass on his lymph node and he was fatigued for quite a long time. The specific treatment depends on whether they find the point of origin after this next surgery, but so far sounds like 6-7 weeks of radiation. No chemo at this point, not ruled out but not as likely based on what they know at this point. The lymph node biopsy came back negative for HPV, however, they also say that biopsy was such a small sample that it's not ruled out yet as a cause. His last blood test the level that tests for Epstein Barr was off the charts and is something they haven't brought up, but on our list of questions to ask if it has anything to do with anything.

    As he's only 45, radiologist mentioned a feeding tube as his choice as long as he can keep his weight up, also depends on the exact radiation regimen we end up with. We've been told anything from only the left side and low dose to the other extreme of both sides, voice box, and inside his mouth. Nothing specific about pain management, but in addition to the radiation treatments he meets with the radiologist once a week specifically to talk through and manage the side effects. They also have a nutritionist he'll be seeing and a specialist in swallowing physical therapy if that becomes necessary.

    Hi Lisa - Thank you for clarifying, I was confused on what happened with the threads! Thank you for your words of support and glad your friend got through it.

    It is reassuring to hear from others who came out the other side. I'm reeling a bit from some TMI and information overload from the radiology appt I went to with him, but his determination to beat this and not let it get him down is also comforting to me.

  4. #14
    Super Moderator Top User po18guy's Avatar
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    Very odd that a skin cancer would show up without an obvious source. Absolutely anything is possible in this realm, but just how this came to pass is very mysterious. Perhaps an all-over exam by a dermatologist would be in order?

  5. #15
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    Probably couldn't hurt. We were surprised too, but the ENT shared that squamous cells are also in soft mucousal tissue like the tongue, esophagus, lungs, tonsils, etc. It's certainly been an education on top of everything else.

  6. #16
    Moderator Senior User IndyLou's Avatar
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    The lymph node biopsy came back negative for HPV, however, they also say that biopsy was such a small sample that it's not ruled out yet as a cause. His last blood test the level that tests for Epstein Barr was off the charts and is something they haven't brought up, but on our list of questions to ask if it has anything to do with anything.
    Lydia--may I ask, is your husband a heavy smoker or drinker? If not, I would further explore a biopsy to determine if HPV is the culprit. Your husband is actually at the prime age for HPV-based cancers to show up. I was 47 when I was diagnosed with that same thing.

    I would strongly recommend to discuss the feeding tube option with your doctor. While every patient is different, radiation can temporarily wreck the inside of the mouth and throat. It's just a very harsh treatment on this part of the body. It became so bad for me, it was impossible to eat when the symptoms (mucositis, dysphagia, stomatitis) were their worst. Even after the symptoms and pain subside somewhat, eating was not at all pleasurable. Nothing tastes good; everything has to be washed down with water; it becomes difficult, even tiresome to chew food. I lost 14% of my body weight, even after my treatments had completed.

    Nutrition definitely becomes a battle for the HNSCC patient, and it's a bit of a Catch-22. Your body needs energy to fight pain and heal itself from the treatments; you must take in calories to produce that energy, but it's painful/difficult/challenging to eat and take in those calories. While you can avoid the pain and challenge by not eating, it'll take longer to heal. The feeding tube isn't a silver bullet, but it does allow one to take in a reasonable number of calories.

    I should also add, the HPV+ SCC diagnoses generally have a better outcome than HPV- SCC. The cancer seems to respond well to radiation, and there are a number of targeted therapies that work very well; e.g., cetuximab, pembrolizamab, nivolumab, etc. when used in conjunction with radiation.

    The journey ahead will be challenging, for both your husband, and you, as his caregiver. But, it can be managed with a good outcome. You both are doing the right things, and you're on a good path. Stay the course.

    I wish you well.
    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

  7. #17
    Newbie New User
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    Lydia, Stage 3 Squamous Cell Carcinoma here with a tumor on the right Larynx. Also brand new to the forum. I'm in Week 4 of 7 of radiation and chemo. Probably very similar to what your husband is going thru right now. Hang in there and keep him eating and getting hydration!
    www.learnedmylesson.wordpress.com

  8. #18
    Moderator Senior User IndyLou's Avatar
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    Hello, dabard--welcome to the "club" that no one really wants to join. I'm sorry that you've become a member, but you have every reason to feel optimistic about your prognosis. Please feel free to start a separate question thread if you have any questions, concerns or thoughts about your cancer.

    Best wishes.
    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

  9. #19
    Newbie Regular User
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    Hi Everyone - Wanted to share a quick update that he had the neck dissection surgery and left tongue base removal last week and he is recovering well! Half his tongue and ear and side of neck is still very numb but his Dr said eventually it will all come back as it is all localized trauma from the surgery. He thankfully did not need to remove or sever any major nerves or muscles so no mobility issues other than his neck will be noticeably stiffer long term. Very fortunate in that and he said everything came out cleanly. Dr feels that he got everything larger than microscopic and should only need some clean up radiation to be safe. We'll see if the biopsy results agree with that! And still hoping they'll turn up the primary.

  10. #20
    Moderator Senior User IndyLou's Avatar
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    That's fantastic news, Lydia, to hear that your husband's surgery went well!

    A couple of points--it's possible that they may NOT find a primary tumor. It's possible that, to use my oncologist's term, the primary lesion may have burned itself out. If they performed a CT scan or PET scan and didn't find another active tumor, I wouldn't lose sleep over it.

    Second, the side of the face and neck where the dissection occurred will remain moderately numb for several weeks, perhaps longer. Even though they didn't "cut" or remove any nerves, the trauma of jostling them during the surgery is the cause. After the moderate numbness dissipates, your husband may feel a general numbness in the area for a while...perhaps even years. I don't mean to alarm you or him, it's not debilitating, but the numbness is noticeable.

    I wish him a speedy recovery...be well!
    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

 

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