ANYONE HERE WITH STAGE II SCC of tongue and node??

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Linda C.
Linda C. Member Posts: 107 Member

What type of treatment did you receive?

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    kind of

    Linda,

    I was stage IVa,  scc, bot, 1 lymph node, hpv+ (surgery, rads & erbitux).

    So, I guess you could say I was Stage II + II SCC of tongue and node.

    Matt

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    edited May 2017 #3
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    Treatment

    Linda, 

    I read both of your posts and it appears you are very concerned on the amount of treatment you will be receiving. That was a concern of mine when I found out by accident that I had cancer. I had Base of Tongue cancer. I did elect Surgery as I was given several options and I wanted the cancer out of me totally. 

    The Surgeon felt he removed all the cancer, he and the Radiation Oncologist figured I only needed Radiation to clean up any stray cells in the area as I had a PET scan prior and it didn't show anything out of the norm. I inquired about adding Chemo and they said that they would hold that as a Back-up in the event that I had reoccurance. I can say that has not happened and my surgery was in 2004. I actually just came home now from getting my yearly scope and all is clear once again. 

    Originally, I told the Surgeon to hit me with everything you have even the kitchen sink if need be, I only wanted to do this once. They said it wouldn't be necessary and they were right. At the time I was Stage 3, but after surgery I was Stage 4 because of the size of the tumor and additional involved Lymphnodes found in the Radical Neck Dissection. 

    My Best to You and Everyone Here

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited May 2017 #4
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    MarineE5 said:

    Treatment

    Linda, 

    I read both of your posts and it appears you are very concerned on the amount of treatment you will be receiving. That was a concern of mine when I found out by accident that I had cancer. I had Base of Tongue cancer. I did elect Surgery as I was given several options and I wanted the cancer out of me totally. 

    The Surgeon felt he removed all the cancer, he and the Radiation Oncologist figured I only needed Radiation to clean up any stray cells in the area as I had a PET scan prior and it didn't show anything out of the norm. I inquired about adding Chemo and they said that they would hold that as a Back-up in the event that I had reoccurance. I can say that has not happened and my surgery was in 2004. I actually just came home now from getting my yearly scope and all is clear once again. 

    Originally, I told the Surgeon to hit me with everything you have even the kitchen sink if need be, I only wanted to do this once. They said it wouldn't be necessary and they were right. At the time I was Stage 3, but after surgery I was Stage 4 because of the size of the tumor and additional involved Lymphnodes found in the Radical Neck Dissection. 

    My Best to You and Everyone Here

    Thank you for the comment.  I

    Thank you for the comment.  I'm still not comfortable with my treatment plan but I will go ahead with it.  So glad for your clear scan.

     

  • Andy13460
    Andy13460 Member Posts: 115
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    Near Stage III

    Hi Linda

    T2:N1:M0 SCC HPV16+ base of tonge.   No surgery, 3 Chemo's Cisplatin day 1,22 & 43.  35 IMRT radiation dose 70Gy.   No feeding tubes or ports.

    Im 7 rads in food tastes slightly different, saliva still I had no side effects from my first Chemo just a bit tired the next day (emend anti sickness works for me). walking every day for 4 miles or more, drinking as much water as possible. Got into the habbit of constantly chewing sugar free gum.

  • Linda C.
    Linda C. Member Posts: 107 Member
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    Andy13460 said:

    Near Stage III

    Hi Linda

    T2:N1:M0 SCC HPV16+ base of tonge.   No surgery, 3 Chemo's Cisplatin day 1,22 & 43.  35 IMRT radiation dose 70Gy.   No feeding tubes or ports.

    Im 7 rads in food tastes slightly different, saliva still I had no side effects from my first Chemo just a bit tired the next day (emend anti sickness works for me). walking every day for 4 miles or more, drinking as much water as possible. Got into the habbit of constantly chewing sugar free gum.

    Hi Andy,  

    Hi Andy,  

    T1: N1:Mo SCC HPV+ base of tongue, metastisis to lymph node, Stage III.  We sure do have a similar diagnosis.  I just don't see why I am not going to be receiving Chemo.  Something tells me that this is a mistake.  Good luck to you with your treatment. 

  • Andy13460
    Andy13460 Member Posts: 115
    edited May 2017 #7
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    From what I was reading on MedScape Stage I-II  surgery if possible or radiation on its own. 

    Stage III-IV Chemo radiation

    Radiation looks to be 66 - 74 GY for both stages

    Head and neck cancer has been one of the “stars” of CRT , in that its use has significantly increased the cure rate of the disease. In treating locally advanced tumours, CRT has improved survival compared with radiation therapy alone.

    I would be asking the doctors to explain the reasons for the treatment choice, the HPV+ is a big plus on the prognosis.

    Good look with it when you start  I'm Just waiting for symptoms to appear but i wont complain if they are a long time in coming.

    Head and neck cancer has been one of the “stars” of CRT , in that its use has significantly increased the cure rate of the disease. In treating locally advanced tumors, CRT has improved survival compared with radiation therapy alone. - See more at: http://www.curetoday.com/publications/cure/2013/spring2013/combining-radiation-and-chemotherapy-may-improve-outcomes?p=2#sthash.luK0DnCB.dpuf

    Head and neck cancer has been one of the “stars” of CRT , in that its use has significantly increased the cure rate of the disease. In treating locally advanced tumors, CRT has improved survival compared with radiation therapy alone. - See more at: http://www.curetoday.com/publications/cure/2013/spring2013/combining-radiation-and-chemotherapy-may-improve-outcomes?p=2#sthash.ADYhl0zp.dpuf
  • Engelsa
    Engelsa Member Posts: 50
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    Explanation or Second Opinion

    Linda,

    You deserve an explanation as to why they are not choosing CRT. If you are uncomfortable with this team please seek a second opinion. I find the very best treatment options are provided Head & Neck Teams. You truly must have confidence in the team treating this condition. You do have time to seek a second opinion. 

    Sara

     

  • Linda C.
    Linda C. Member Posts: 107 Member
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    Hi Sara,

    Hi Sara,

    The Radiation Oncologist explained that he is following the NCCN Guidelines for Cancer of the Oropharynx.  He even gave me a two page copy of the guidelines because he knew how I felt about receiving Chemo and Radiation.  Because my primary is inoperable the guidelines say Radiation Therapy only.  He went on to explain that if this treatment didn't work I would not receive Radiation again but it would be surgery.  That means I would loose my whole tongue as well as lymph node.  MD Anderson Hospital also follows the NCCN Guidelines.   If all hospitals follow these guidelines then I just as soon stay here.

  • Engelsa
    Engelsa Member Posts: 50
    edited May 2017 #10
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    Ok

    Linda

    I am in complete support of your decision. I know how important it is for the patient to be comfortable with their treatment team. This is about you and what you need. I am glad to know you have confidence in this team and the treatment plan.

    I wish you the very best in your journey to recovery and health.

    Sara

  • Classick49
    Classick49 Member Posts: 3
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    Linda C. said:

    Hi Sara,

    Hi Sara,

    The Radiation Oncologist explained that he is following the NCCN Guidelines for Cancer of the Oropharynx.  He even gave me a two page copy of the guidelines because he knew how I felt about receiving Chemo and Radiation.  Because my primary is inoperable the guidelines say Radiation Therapy only.  He went on to explain that if this treatment didn't work I would not receive Radiation again but it would be surgery.  That means I would loose my whole tongue as well as lymph node.  MD Anderson Hospital also follows the NCCN Guidelines.   If all hospitals follow these guidelines then I just as soon stay here.

    Hi sorry to hear of your

    Hi sorry to hear of your challenge. My husband had a huge part of his tongue removed in 2008. It was replaced with muscle from his forearm for the tissue and muscle texture is the same. It was stave 4 salivary gland. All in all, his surgery was 11 hrs. His reconstruction was 4 then skin graph 2hrs. Took him a year to get back to 80% of self meaning, his voice was affected and had to see speech therapist for a while. He still had to undergo two rounds of chemo to catch anything that was hidden in the cells.

    What was disturbing was... We were not properly prepared for the post surgery. The truth would have been nice to been told. So I caution you to tell them to give it to you straight. His ortolaryngologist was top in her field at Emory University hospital. We are grateful for the results. I wish you the best. I pray for your continued strength and endurance.

     

    Tj

  • Linda C.
    Linda C. Member Posts: 107 Member
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    Engelsa said:

    Ok

    Linda

    I am in complete support of your decision. I know how important it is for the patient to be comfortable with their treatment team. This is about you and what you need. I am glad to know you have confidence in this team and the treatment plan.

    I wish you the very best in your journey to recovery and health.

    Sara

    Thank you.

    Thank you.

  • Linda C.
    Linda C. Member Posts: 107 Member
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    Hi sorry to hear of your

    Hi sorry to hear of your challenge. My husband had a huge part of his tongue removed in 2008. It was replaced with muscle from his forearm for the tissue and muscle texture is the same. It was stave 4 salivary gland. All in all, his surgery was 11 hrs. His reconstruction was 4 then skin graph 2hrs. Took him a year to get back to 80% of self meaning, his voice was affected and had to see speech therapist for a while. He still had to undergo two rounds of chemo to catch anything that was hidden in the cells.

    What was disturbing was... We were not properly prepared for the post surgery. The truth would have been nice to been told. So I caution you to tell them to give it to you straight. His ortolaryngologist was top in her field at Emory University hospital. We are grateful for the results. I wish you the best. I pray for your continued strength and endurance.

     

    Tj

    I was told by my ENT doctor

    I was told by my ENT doctor that there would be not way to remove the ulcer on the base of my tongue and get one inch clear margins on all sides.  Therefore, I would lose my whole tongue.  Wishing you and your husband continued good health.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
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    Linda C. said:

    Hi Sara,

    Hi Sara,

    The Radiation Oncologist explained that he is following the NCCN Guidelines for Cancer of the Oropharynx.  He even gave me a two page copy of the guidelines because he knew how I felt about receiving Chemo and Radiation.  Because my primary is inoperable the guidelines say Radiation Therapy only.  He went on to explain that if this treatment didn't work I would not receive Radiation again but it would be surgery.  That means I would loose my whole tongue as well as lymph node.  MD Anderson Hospital also follows the NCCN Guidelines.   If all hospitals follow these guidelines then I just as soon stay here.

    More info

    Hi Linda.  The NCCN guidelines do state definitive RT for a T0-1, N0-1 disease...followed by surgery.  This would appear to be the generally accepted route.  I received care at the University of Iowa Hospitals NCI comprehensive cancer center (happen to work here too) and my team followed the NCCN guidelines and discussed it at tumor board.  If all your docs are in agreement it sound like you are in good hands.  HPV+ responds great to RT alone!