Stage 4A but primary site not found?

dragonfly2
dragonfly2 Member Posts: 13
edited March 2014 in Head and Neck Cancer #1
My husband had head and neck cancer stage 4a, but the doctors could not find exactly where the cancer started. We were at one of the best Chicago hospitals with excellent doctors, whom we have much faith in. Husband was diagnosed based on the lymph node involvement in his neck. Two of the three nodes in the neck were malignant. He has squamous cell carcinoma somewhere in his head and neck. The doctors took several exploratory biopsies of the area and could not find the primary source of his cancer. Brain cancer and lymphoma (etc) was all ruled out. I still find this uncomfortable and I was wondering if anyone else had this experience.

I read several of the discussions and everyone seems to know the source of their cancer. The doctors successfully treated my husband for 7 months of chemo and radiation to the general area. They said he would receive the same treatment plus one extra chemo than if they knew where the primary source was. He was part of a study group. It has been 8 months out of treatment and he is cancer free. Thank God. I witnessed how difficult this treatment was first hand and have read many discussion boards. I am grateful for how well he handled the side effects of treatment. He somehow avoided a feeding tube, but he lost 50 lbs. Thank heaven he was a bit overweight to begin with.

I would like to hear from anyone that has had any experience similar with stage 4a H&N squamous cell carcinoma cancer, or from anyone whose doctors never found the primary source of their H&N cancer. This scares me. In the meantime, I will be praying for everyone on the discussion boards. It really helps... 'the power of prayer.' And you have helped me just knowing we are not alone. Thanks.

Comments

  • ljoy
    ljoy Member Posts: 94
    #2
    Primary
    My ENT doctor was unable to find my primary from a lympth node removed in the right side of my neck. They took me back to surgery and scoped my mouth, throat and even looked into my esophegus and lungs but found nothing. They told me the same thing that the treatment would be about the same even if they did not find the primary.

    I was not comfortable with that and asked for a referral to the M.D. Anderson Cancer Center in Houston, Texas. After two days of evaluation and further CT Scan, they were pretty sure it was in my tonsils. They scheduled me for surgery the following week and found the cancer in my right tonsil. It did allow the IMRT radiation to be more specific in that area during treatment.

    I'm now three years post treatment and cancer free. In fact I had my annual PET Scan yesterday.

    Gald your husband is doing okay and pray he stays cancer free.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #3
    Primary site
    Dragonfly2. In my limited knowledge of these things I have to agree with lJoy. It amazes me that you known the primary site was not found and have beeen carrying that load. You are an amazing woman and your husband is lucky you are looking out for him. In a perfect world nothing might happen. Or the cancer can be cured when it finally shows itself. But I know the world is not perfect and by the time my cancer was found I had lost the feeling in half my face. It is rather funny when my kids find food stuck to my face and my dog sure likes licking me for some reason. The point is cancer is not just the issue here. Long term damage that can be avoided is also an issue. If you have the resources I would look into more tests. If nothing else it will ease your mind a bit. If your husband is happy with things the way they are then remind him "this is not just about you". Sometimes we forget that and our families suffer. I'll be praying for you as I always pray for all cancer patients and those close friends I have lost to cancer. Slickwilly
  • dragonfly2
    dragonfly2 Member Posts: 13
    #4
    ljoy said:

    Primary
    My ENT doctor was unable to find my primary from a lympth node removed in the right side of my neck. They took me back to surgery and scoped my mouth, throat and even looked into my esophegus and lungs but found nothing. They told me the same thing that the treatment would be about the same even if they did not find the primary.

    I was not comfortable with that and asked for a referral to the M.D. Anderson Cancer Center in Houston, Texas. After two days of evaluation and further CT Scan, they were pretty sure it was in my tonsils. They scheduled me for surgery the following week and found the cancer in my right tonsil. It did allow the IMRT radiation to be more specific in that area during treatment.

    I'm now three years post treatment and cancer free. In fact I had my annual PET Scan yesterday.

    Gald your husband is doing okay and pray he stays cancer free.

    Primary
    Hi ljoy,

    Thank you for your response. I makes me feel better knowing you are 3 years cancer free. Ironically, the doctors took out my husbands right tonsil too because it was the only thing that looked suspicious. The biopsy was negative, but they still thought it did't look right. This was my husband's second bout with cancer, but each incidence was unrelated with the first time being 10 yrs ago (sarcoma of the inner thigh). However, his first oncologist (Dr. Merrill Kies) left Northwestern and went to MD Anderson. I happened to look him up online and found out that he has specialized in Head and Neck Cancer. Do you know him? He was excellent. If I knew he specialized in this area we would have maybe travelled there for his opinion,. Anyway, thanks for your response. Best wishes on your continued health.
  • dragonfly2
    dragonfly2 Member Posts: 13
    #5
    slickwilly said:

    Primary site
    Dragonfly2. In my limited knowledge of these things I have to agree with lJoy. It amazes me that you known the primary site was not found and have beeen carrying that load. You are an amazing woman and your husband is lucky you are looking out for him. In a perfect world nothing might happen. Or the cancer can be cured when it finally shows itself. But I know the world is not perfect and by the time my cancer was found I had lost the feeling in half my face. It is rather funny when my kids find food stuck to my face and my dog sure likes licking me for some reason. The point is cancer is not just the issue here. Long term damage that can be avoided is also an issue. If you have the resources I would look into more tests. If nothing else it will ease your mind a bit. If your husband is happy with things the way they are then remind him "this is not just about you". Sometimes we forget that and our families suffer. I'll be praying for you as I always pray for all cancer patients and those close friends I have lost to cancer. Slickwilly

    Primary Site
    Hi Slick, Thanks for the response. You too are amazing. You have good insight. You are so right that cancer is not only about the patient, but it is about others as well. Thanks for recognizing that. I sometimes think some patients forgets that their disease afects the whole family. Especially when they have half a brain to understand the potential of the disease. I guess we have to remember the threat and potential of cancer without forgetting the power of pray and the wonderful doctors and scientists that make advances in the field of medicine. I'll be praying for you as well.
  • ljoy
    ljoy Member Posts: 94
    #6
    M.D. Anderson Doctor
    I had Doctor Diaz. The head and neck department is very large. One of my local doctors knew him and made my appointment with him.
  • heschie
    heschie Member Posts: 37
    #7
    primary
    My husbands also was not found he gets 6 weeks of rad. 5 days a week and chemo 1x week for 6 weeks. He gets radiation from just under his eyes to just above his heart and from ear to ear for just that reason

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