Hypopharyngeal changed to Base of Tongue

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Misty2011
Misty2011 Member Posts: 15
edited March 2011 in Head and Neck Cancer #1
Hi all,

I posted last week after finding out my Dad had hypopharyngeal cancer. You all were so kind to give me such great information, advice, etc., some even taking time to email me and give me such great information! Thank you all so very much for that! My Dad saw his cancer doctor (oncologist?) on Tuesday. The cancer is actually not on the hypopharynx but on the base of the tongue. What kind of cancer is this exactly? Is it called base of tongue, or is it orthopharynx, or something else? I'm a little unclear on this and my Dad and Stepmom said the doctor only said base of tongue. I like to know exactly so I can research and get as much info as possible. He was originally told the PET scan showed no lymph node involvement and no spread of the cancer which was great news, then the oncologist told him that based on his examination he suspected lymph node involvement. He did say he's had a 90% cure rate with his many patients on this type of cancer. For those of you who have cancer on base of tongue, what do you think of this? It's all so confusing. Dad saw the dentist today, luckily teeth are in good shape, and is getting a flouride tray made. He is having feeding tube put in Monday and starting treatment soon after of 7 weeks radiation M-F with chemo every 3 weeks (total of 3). His cancer Dr. is Dr. Sobol in Decatur, IL. Any info, suggestions, thoughts, etc. would be greatly appreciated! Again God bless all of you!!

Misty

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  • Hal61
    Hal61 Member Posts: 655
    #2
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    BOT
    Hi Misty, lots of people here have experience with this cancer, myself included. I'm a little over a year out of treatment that sounds like your dad's, 35 radiation treatments and three chemo sessions. Base of tongue (BOT) is the location, the most common cancer type being SCC, squamous cell cancer. It's a cancer of the epidermal layer, but the epidermal layer goes all over your body and around your mouth and tongue.

    I had the gastric tube, which I kept for about sex or seven months. The information you'll need will come in stages, starting with mask fitting, freaking over the tightness of it, and through the effects of daily radiation and chemo. Fortunately, one of the people here, Sweetblood, has arranged recent and past discussions on all the issues in a thread that can be searched by using the "Search CSN Content" link at the top right of the page after you log in. Put in "Superthread" and it should come up. These are not just links to sites, but links and collections to threads that will cover a lot of your and your dad's questions. For now it is good to hear that he has a treatment plan, and you have a doctor you trust. The high incidence of lymph involvement in this type of cancer is typical. The treatment will be tough, but most of us here, care givers and patients, have been through it, and your dad can do it to. This cancer is beatable. Best to you, your dad, and your family. Come back whenever you need with questions, and for support.


    Hal
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #3
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    My wife has B.O.T. with 2 lymph nodes involved
    Hi Misty, I can tell you really love your Dad, I was the same way with my wife Connie when she was 1st diagnosed. Connie did induction chemotherapy every 3 weeks like your Dad is going to do followed by radiation for 33 treatments (7 weeks). She finished her 23rd radiation treatment yesterday. She started with chemo and then the radiation. Connie had a dramatic response to chemo and her tumors shrunk after her 1st treatment. She did Cisplatin, Doxetaxel, Cetuximab on first day then she had an infusion pump pumping 5FU into her continuously for next 4 days. She would bring the pump home and it would be disconnected after 96 hours. Actually though after her 2nd treatment she became ill with continuous diahrea and ended up her colon was the problem they call it colonitus. She was in the hospital for 34 days and never did her 3rd treatment. 10 days after she was discharged she started radiation. She is coping ok with the radiation but it is rough and she has a tough month ahead of her. She also has a feeding tube and it's not that bad really, I caught on pretty fast, the biggest problem we have had is finding time to give it to her 3 times a day since we normally don't get home from radiation till 2-4pm. Lots of luck on this and remember everyone is different hopefully your Dad will breeze right through his treatments. All the best, Homer & Connie
  • Misty2011
    Misty2011 Member Posts: 15
    #4
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    connieprice1 said:

    My wife has B.O.T. with 2 lymph nodes involved
    Hi Misty, I can tell you really love your Dad, I was the same way with my wife Connie when she was 1st diagnosed. Connie did induction chemotherapy every 3 weeks like your Dad is going to do followed by radiation for 33 treatments (7 weeks). She finished her 23rd radiation treatment yesterday. She started with chemo and then the radiation. Connie had a dramatic response to chemo and her tumors shrunk after her 1st treatment. She did Cisplatin, Doxetaxel, Cetuximab on first day then she had an infusion pump pumping 5FU into her continuously for next 4 days. She would bring the pump home and it would be disconnected after 96 hours. Actually though after her 2nd treatment she became ill with continuous diahrea and ended up her colon was the problem they call it colonitus. She was in the hospital for 34 days and never did her 3rd treatment. 10 days after she was discharged she started radiation. She is coping ok with the radiation but it is rough and she has a tough month ahead of her. She also has a feeding tube and it's not that bad really, I caught on pretty fast, the biggest problem we have had is finding time to give it to her 3 times a day since we normally don't get home from radiation till 2-4pm. Lots of luck on this and remember everyone is different hopefully your Dad will breeze right through his treatments. All the best, Homer & Connie

    Thanks so much Hal, Homer &
    Thanks so much Hal, Homer & Connie! Thank you both so much for the information and kind responses! Hal I sure hope this cancer is beatable! That is what I'm holding onto, and my Dad as well... he says he'll fight through these rough months if he knows all will be ok in the end. Of course I know there is no guarantee, but at least it's hopeful! God blss you on your continuing journey! Homer, it sure sounds like your wife has had a terribly rough way to go! I sure hope she is able to make it through these next few months much easier. It sure sounds like she has a wonderful partner to help her through! Of course I hope my Dad is able to make it through relatively unscathed (yeah right, lol) but it is good to hear of lots of different scenarious so that if something does happen, you know others have been through it and have come out of it! I will keep Connie in my prayers! And you too!
  • Pam M
    Pam M Member Posts: 2,196
    #5
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    Welcome to the Club - Sorry
    Misty,

    I was diagnosed with Stage four Base of Tongue cancer with two lymph nodes involved in October of 2009. I think "Oropharyngeal" is the word you're looking for (what your father has, and I had). Unlike your dad, we knew from day one that I had lymh node involvement, and two affected nodes showed on my first PET. It is totally possible that the cancer has spread to a lymph node, but has not yet become active enough to show up on a PET scan. It's also totally possible (and I hope this is the case) that your dad's nodes are completely clean. I finished my initial treatment last March 16, then had to have a modified radical neck dissection in December because one of my lymph nodes did not respond completely to the earlier treatment. At this time, all cancer that had shown up on my PET and CT scans is gone. Here's hoping at this time next year, you're telling us that your dad's followup scans are still clean. Like everyone else will say - this treatment is no fun, but is doable. Good luck to you both.
  • Misty2011
    Misty2011 Member Posts: 15
    #6
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    Pam M said:

    Welcome to the Club - Sorry
    Misty,

    I was diagnosed with Stage four Base of Tongue cancer with two lymph nodes involved in October of 2009. I think "Oropharyngeal" is the word you're looking for (what your father has, and I had). Unlike your dad, we knew from day one that I had lymh node involvement, and two affected nodes showed on my first PET. It is totally possible that the cancer has spread to a lymph node, but has not yet become active enough to show up on a PET scan. It's also totally possible (and I hope this is the case) that your dad's nodes are completely clean. I finished my initial treatment last March 16, then had to have a modified radical neck dissection in December because one of my lymph nodes did not respond completely to the earlier treatment. At this time, all cancer that had shown up on my PET and CT scans is gone. Here's hoping at this time next year, you're telling us that your dad's followup scans are still clean. Like everyone else will say - this treatment is no fun, but is doable. Good luck to you both.

    Thank you so much Pam! I
    Thank you so much Pam! I sure hope so too! I'm so glad your PET and CT scans show your cancer is gone! How wonderful! My Dad had a feeding tube and chemo port put in today, so he is pretty sore, but doing okay. He is keeping his spirits up so that's a great thing! He got wonderful news today - his cancer was caught early, no lymph node involvement! We were so very happy for this news! Now it's just peparing for the fight! Just wish I could take some of the pain for him... God bless you and I hope you continue on a happy, healthy journey!

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