Tongue Tumor Size

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brigboo67
brigboo67 Member Posts: 24
in Head and Neck Cancer #1
When we went to Mayo, the ENT surgeon said that my mom's tongue tumor that measures 5cmx4cmx2cm was "massive". He said that she has already beat the statistics because 99.9% of people with this size tumor would already be dead. He said that this tumor would take her life...He said in 35 years of practicing that he has only seen 10 tumors this size with varying outcomes...he said the best option would be total tongue removal followed by chemo/rad. Her other options according to him are do nothing and die or chemo/rad and hope it works. My mom said that she didnt want to lose her tongue so he looked at my sister and I and said "there that was easy...decision made...doing nothing is not an option so you do chemo/rad"...he patted mom on the shoulder and said "have chemo/rad and come back a month after you finish and let me see how you are doing" and he walked out of the room. Now my mom feels like she is a goner...Is there anyone else who has had a tongue tumor this size along with bilateral neck node metastis and radiation with concurrent chemo worked???? Thanks I am desperate for information.

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  • connieprice1
    connieprice1 Member Posts: 300 Member
    #2
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    Chemo & Radiation can work!!
    Hello Brigboo, My wife Connie had a tumor at the base of her tongue that mastasized to her lymph nodes in her neck which two of the lymph nodes were large. The tumor at the base of tongue was 2.8 cm x 2.5 cm x 2.5 cm. which was considered large. Her doctor recommended chemo & radiation also. We were heartbroken because we were hoping for surgery because we wanted the tumors removed right away. Is your mother HPV+ ? If she is, this will give her a much better prognosis. Connie's treatment plan was 9 weeks of induction chemotherapy followed by 7 weeks of radiation. After her 1st treatment of chemo (cisplatin, docetaxol, cetuxemab followed by 4 days of 5FU via an infusion pump she carried on her waist) I noticed within a few days that the tumors in her neck were shrinking and within a week the swollen lymph node tumors had returned to normal size and they were the size of 2 walnuts on her neck. My wife only did 2 chemo treatments due to complications but when she had a ct scan afterwards no tumors were detected. She followed up chemo with 7 weeks of radiation and she is 5 weeks out of treatment. She will have a ct scan May 5th and we are praying for the best. It has been rough with a lot of ups and downs but my wife only had 3 months to live without treatment. Like you guys, I thought my wife was a goner but we are optimistic now and no treatment was never an option. Some doctor's lack compassion and I'm not convinced he really gives a damn. Maybe your family should seek another opinion and I would try to get her in at MD Anderson Cancer Treatment Center in Houston, Tx. This hospital specializes in cancer and they may have saved my wife's life which to us is "priceless". We will keep your mother in our prayers, Homer & Connie
  • DrMary
    DrMary Member Posts: 531 Member
    #3
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    connieprice1 said:

    Chemo & Radiation can work!!
    Hello Brigboo, My wife Connie had a tumor at the base of her tongue that mastasized to her lymph nodes in her neck which two of the lymph nodes were large. The tumor at the base of tongue was 2.8 cm x 2.5 cm x 2.5 cm. which was considered large. Her doctor recommended chemo & radiation also. We were heartbroken because we were hoping for surgery because we wanted the tumors removed right away. Is your mother HPV+ ? If she is, this will give her a much better prognosis. Connie's treatment plan was 9 weeks of induction chemotherapy followed by 7 weeks of radiation. After her 1st treatment of chemo (cisplatin, docetaxol, cetuxemab followed by 4 days of 5FU via an infusion pump she carried on her waist) I noticed within a few days that the tumors in her neck were shrinking and within a week the swollen lymph node tumors had returned to normal size and they were the size of 2 walnuts on her neck. My wife only did 2 chemo treatments due to complications but when she had a ct scan afterwards no tumors were detected. She followed up chemo with 7 weeks of radiation and she is 5 weeks out of treatment. She will have a ct scan May 5th and we are praying for the best. It has been rough with a lot of ups and downs but my wife only had 3 months to live without treatment. Like you guys, I thought my wife was a goner but we are optimistic now and no treatment was never an option. Some doctor's lack compassion and I'm not convinced he really gives a damn. Maybe your family should seek another opinion and I would try to get her in at MD Anderson Cancer Treatment Center in Houston, Tx. This hospital specializes in cancer and they may have saved my wife's life which to us is "priceless". We will keep your mother in our prayers, Homer & Connie

    and will probably be the standard treatment
    I had hoped we could do surgery instead of chemo/radiation and so hit the books looking for support. Instead, I found that, for HPV-cause H&N cancer, chemo/radiation alone compared well with surgery plus chemo/radiation and did better than surgery alone. They took out the primary but left the lymph node it had spread to (using it to gauge the effect of the treatment on the other lymph nodes that might also have been affected). It is quite amazing to watch that sucker melt away. It is also amazing to see how much damage radiation and chemo can do to tissues, but a lot of that heals, whereas total tongue removal does not. I don't blame your mother for not wanting to lose it, but I would want to make that decision based on information from a better doctor (her doctor seems not only to be mean, but he's either uninformed on cancer research or fibbing to her).

    Please urge your mother to get a second opinion from a better doctor.
  • brigboo67
    brigboo67 Member Posts: 24
    #4
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    connieprice1 said:

    Chemo & Radiation can work!!
    Hello Brigboo, My wife Connie had a tumor at the base of her tongue that mastasized to her lymph nodes in her neck which two of the lymph nodes were large. The tumor at the base of tongue was 2.8 cm x 2.5 cm x 2.5 cm. which was considered large. Her doctor recommended chemo & radiation also. We were heartbroken because we were hoping for surgery because we wanted the tumors removed right away. Is your mother HPV+ ? If she is, this will give her a much better prognosis. Connie's treatment plan was 9 weeks of induction chemotherapy followed by 7 weeks of radiation. After her 1st treatment of chemo (cisplatin, docetaxol, cetuxemab followed by 4 days of 5FU via an infusion pump she carried on her waist) I noticed within a few days that the tumors in her neck were shrinking and within a week the swollen lymph node tumors had returned to normal size and they were the size of 2 walnuts on her neck. My wife only did 2 chemo treatments due to complications but when she had a ct scan afterwards no tumors were detected. She followed up chemo with 7 weeks of radiation and she is 5 weeks out of treatment. She will have a ct scan May 5th and we are praying for the best. It has been rough with a lot of ups and downs but my wife only had 3 months to live without treatment. Like you guys, I thought my wife was a goner but we are optimistic now and no treatment was never an option. Some doctor's lack compassion and I'm not convinced he really gives a damn. Maybe your family should seek another opinion and I would try to get her in at MD Anderson Cancer Treatment Center in Houston, Tx. This hospital specializes in cancer and they may have saved my wife's life which to us is "priceless". We will keep your mother in our prayers, Homer & Connie

    Thanks for the info
    At our local hospital, they do induction chemo followed by radiation along with weekly chemo treatments. At Mayo, they do 7 weeks rads along with 3 concurrent chemo treatments with cisplatin. I asked the ENT here at home if my mom was HPV positive and she didn't seem like she wanted to test the path slides but when we got to Mayo, they said that was important to know. So they are testing to see if she is. We haven't heard yet.....Good luck on the 5th!!!!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    brigboo67 said:

    Thanks for the info
    At our local hospital, they do induction chemo followed by radiation along with weekly chemo treatments. At Mayo, they do 7 weeks rads along with 3 concurrent chemo treatments with cisplatin. I asked the ENT here at home if my mom was HPV positive and she didn't seem like she wanted to test the path slides but when we got to Mayo, they said that was important to know. So they are testing to see if she is. We haven't heard yet.....Good luck on the 5th!!!!

    Hi brigboo
    I to think you are going in the right direction; I mix my treatment a little different RRC(Pray \Rad\ Chemo) I found it to be a winning combination.

    All the best to your Mom and her fight
    Hondo
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
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    brigboo67 said:

    Thanks for the info
    At our local hospital, they do induction chemo followed by radiation along with weekly chemo treatments. At Mayo, they do 7 weeks rads along with 3 concurrent chemo treatments with cisplatin. I asked the ENT here at home if my mom was HPV positive and she didn't seem like she wanted to test the path slides but when we got to Mayo, they said that was important to know. So they are testing to see if she is. We haven't heard yet.....Good luck on the 5th!!!!

    Yep.
    Stanford prescribed for me the same treatment that Mayo is offering you all. I got eight weeks of rads plus 3 concurrent chemos with cisplatin. And, YES, HPV status is very important. HPV positive appears to convey a significant survival advantage.

    Deb
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
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    another opinion
    Wow! It sounds like it was easy for the doctor but not for anyone else!

    I would be extremely disappointed in that sort of cavalier behavior, even if I thought he or she was right.

    My tumor, I only recently learned (I used to care not, but would only say 'do what you have to do') was a 5cm job, and they removed half of my tongue (vertically) and replaced it with a 'flap' from my left arm. THEN they did 33 of 35 planned rad treatments along with chemotherapy (cisplatin).

    Your mom might not want to lose her tongue, but, in fact, a number of other factors should come in to play including her age, her physical condition, her goals, even. I am more than five years out, can eat, can talk, and am, at least as importantly, cancer-free.

    It sounds as though this particular doc is not leaving that option to mom if she chooses 'only' chemo/rad as treatment.

    I agree with DrMary, for what it is worth: seek another opinion. If the way you represented this particular doctor's presentation of options is correct, then he/she is probably not the one for your mom.

    That said, none of us really know your mom's specific situation. It is ultimately her choice, obviously.

    Best wishes to mom and her family.

    Take care,

    Joe
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
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    tumor size
    Hi, My husband was diagnosed with a 4 cm by 3.7 cm base of tongue tumor that reached past mid line with mats to 2 lymph nodes. The Head neck surgeon did not recomend removal because of complications of swallowing and high risk of aspiration and pneumonia. We were relieved. No one has said if it is HPV though. Guess I need to ask.

    Good luck with Mom and take care of your self. My prayers are with you both.

    Debbie

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