complications need advise

irishlass258
irishlass258 Member Posts: 16
in Head and Neck Cancer #1

My husband was diagnosed with base of tongue cancer. We live in NE Pennsylvania about 2 hours from Philly. The pathology report stated that it was "large cell undifferentiated carcinoma markers, with neurendocrine features. Positive for epithelial markers,MOC-31, chromogranin, synaptphysin". Our oncologist suspects that this is a mistake as this type of cancer is very rare in this area. As a result, we are now going to Sloan-Kettering for a second look at out records. 

Has this happened to anyone here? Our oncologist has several ideas of how to treat depending if it is this type of cancer or if it is SCC, the more common form.

He believes that it is T2, N1 stage 3. His concern is the treatment plan will differ depending on what this cancer is. I really don't know what those numbers mean. 

He was first diagnosed in November, right after Thanksgiving. Holidays have delayed visits with doctors because of holiday schedules. We are going tomorrow to Sloan and hope to get some answers.

My husband is anxious to start treatment. He feels that the longer the daly the more problems, because he feels this is growing and starting to become uncomfortable for him. 

Would appreciate any insights on this matter.

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
    No Suggestions at the moment

    Irishlass,

    I don't have any suggestions at the moment, mainly because you and your husband will be seeing someone tomorrow. I just wanted to mention, 11 years ago, I had Base of Tongue cancer SCC and went to the University of Pennsylvania. 

    I hope that you get firm answers tomorrow

    My Best to You Both and Everyone Here

  • wmc
    wmc Member Posts: 1,804
    #3
    Second Opinion may be very helpful....

    We have several persons that were not SCC but it was always in the nasil cavity, and was still different then this. I have read it does show up in Head and Neck, but very uncommon. Now depending what Sloan says, you might even go for three opions.

    We'll keep you both in my thoughts and prayers.

     image

    Bill.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #4
    I understand your husbands thinking

    I live just over an hour north of Philly and once I was diagnosed in Reading they sent me to Philly. I had a biopsy on a Monday, Surgery planning Wednesday, and the surgery Friday all the same week, one week before Christmas 2009. The Hospital at the University of Pennsylvania is the best. I even drove down there for 30 radiation treatments because they gave me better odds. I am now heading back down today for treatment with a new bout with cancer unrelated to the first. While the docs up here scratch their heads the HUB doctors react. In a few weeks I should be a two time survivor.

    Just my $.03 (inflation)

     

    Life is good

          Jeff

  • irishlass258
    irishlass258 Member Posts: 16
    #5
    Appointment at Sloan-Kettering

     We had our appointment at Sloan Kettering yesterday. It confirms the original diagnosis of  large cell neuroendocrine carcinoma of the base of tongue. 

    This type of cancer at the base of tongue is extremely rare, about 1%!! It is also very aggressive and fast growing.   According to the Doctor, it also seems to react well to treatment. However, it also is likely to reoccur so careful montoring must be done.  Because it is so rare, there are no clinical trials.In addition since we already have an oncologist and radiologist at home.

    She called our local oncologist and discussed appropriate treatment. 

    We will meet with our local doctor on Friday and he will explain what he wants to do. We are very confident with this doctor. We are glad we went for the second opinion and are glad that they feel that we will get the right treatment at home. . 

    We know that we will have a uphill struggle, but we must put our faith in our doctors and God to get us through. Thank you so much for all your support, it means a great deal to me to know that there is support and advise available here. I am sure that I will continue to come here for advise and help throughout ourjourney.

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
    irishlass258 said:

    Appointment at Sloan-Kettering

     We had our appointment at Sloan Kettering yesterday. It confirms the original diagnosis of  large cell neuroendocrine carcinoma of the base of tongue. 

    This type of cancer at the base of tongue is extremely rare, about 1%!! It is also very aggressive and fast growing.   According to the Doctor, it also seems to react well to treatment. However, it also is likely to reoccur so careful montoring must be done.  Because it is so rare, there are no clinical trials.In addition since we already have an oncologist and radiologist at home.

    She called our local oncologist and discussed appropriate treatment. 

    We will meet with our local doctor on Friday and he will explain what he wants to do. We are very confident with this doctor. We are glad we went for the second opinion and are glad that they feel that we will get the right treatment at home. . 

    We know that we will have a uphill struggle, but we must put our faith in our doctors and God to get us through. Thank you so much for all your support, it means a great deal to me to know that there is support and advise available here. I am sure that I will continue to come here for advise and help throughout ourjourney.

     

    3rd opinion

    irishlass258,

    Treatments work every day.

    Good luck,

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    #7
    irishlass258 said:

    Appointment at Sloan-Kettering

     We had our appointment at Sloan Kettering yesterday. It confirms the original diagnosis of  large cell neuroendocrine carcinoma of the base of tongue. 

    This type of cancer at the base of tongue is extremely rare, about 1%!! It is also very aggressive and fast growing.   According to the Doctor, it also seems to react well to treatment. However, it also is likely to reoccur so careful montoring must be done.  Because it is so rare, there are no clinical trials.In addition since we already have an oncologist and radiologist at home.

    She called our local oncologist and discussed appropriate treatment. 

    We will meet with our local doctor on Friday and he will explain what he wants to do. We are very confident with this doctor. We are glad we went for the second opinion and are glad that they feel that we will get the right treatment at home. . 

    We know that we will have a uphill struggle, but we must put our faith in our doctors and God to get us through. Thank you so much for all your support, it means a great deal to me to know that there is support and advise available here. I am sure that I will continue to come here for advise and help throughout ourjourney.

     

    Don't let statistics frighten you or get in the way. Each case is unique, so even if the cancer is very rare, it doesn't mean you won't beat it. I'm glad you consulted with the docs at MSKCC - they are top notch...but it's even better you can do your treatments at your hospital close to home. I don't know how we would have managed away from home.

    Please keep us in the loop and visit whenever you need - we'll be pulling for you!

    Barbara

  • swopoe
    swopoe Member Posts: 492
    #8
    irishlass258 said:

    Appointment at Sloan-Kettering

     We had our appointment at Sloan Kettering yesterday. It confirms the original diagnosis of  large cell neuroendocrine carcinoma of the base of tongue. 

    This type of cancer at the base of tongue is extremely rare, about 1%!! It is also very aggressive and fast growing.   According to the Doctor, it also seems to react well to treatment. However, it also is likely to reoccur so careful montoring must be done.  Because it is so rare, there are no clinical trials.In addition since we already have an oncologist and radiologist at home.

    She called our local oncologist and discussed appropriate treatment. 

    We will meet with our local doctor on Friday and he will explain what he wants to do. We are very confident with this doctor. We are glad we went for the second opinion and are glad that they feel that we will get the right treatment at home. . 

    We know that we will have a uphill struggle, but we must put our faith in our doctors and God to get us through. Thank you so much for all your support, it means a great deal to me to know that there is support and advise available here. I am sure that I will continue to come here for advise and help throughout ourjourney.

     

    Being confident in your

    Being confident in your doctor and team is so important. You will be in my prayers and thoughts as you start on this journey. I wish you all the best.

  • MrsBD
    MrsBD Member Posts: 615 Member
    #9
    Welcome

    Welcome to your home away from home. The people on this site gave me great advice and support and I know they'll do the same for you. We've been through the shock of a cancer diagnosis and know what you are experiencing. Having confidence in your doctors is important, and getting a second opinion like you did can reinforce that confidence. You can rest assured now that your husband is getting good treatment at your local center. We'll be here for you with support and prayers.

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
     

     

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    irishlass258 said:

    Appointment at Sloan-Kettering

     We had our appointment at Sloan Kettering yesterday. It confirms the original diagnosis of  large cell neuroendocrine carcinoma of the base of tongue. 

    This type of cancer at the base of tongue is extremely rare, about 1%!! It is also very aggressive and fast growing.   According to the Doctor, it also seems to react well to treatment. However, it also is likely to reoccur so careful montoring must be done.  Because it is so rare, there are no clinical trials.In addition since we already have an oncologist and radiologist at home.

    She called our local oncologist and discussed appropriate treatment. 

    We will meet with our local doctor on Friday and he will explain what he wants to do. We are very confident with this doctor. We are glad we went for the second opinion and are glad that they feel that we will get the right treatment at home. . 

    We know that we will have a uphill struggle, but we must put our faith in our doctors and God to get us through. Thank you so much for all your support, it means a great deal to me to know that there is support and advise available here. I am sure that I will continue to come here for advise and help throughout ourjourney.

     

     

     

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