Tung Cancer

swartpb
swartpb Member Posts: 32
in Head and Neck Cancer #1
Hi i'm Pieter, i was diagnosed with tung cancer 6 years ago. The dr removed the cancer on the tung with the biops. Another dr cut 30 x 20 x 20 mm of the tung in the area where the 1st dr did the biops, but found that all the cancer was cut out with the biops. No radiation or chemo was done afterwards.
In April 2010 i went for another biops and the cancer was back - the size of the area where the 2nd dr cut - now its huge 70 x 40 x 40. The dr's recommended me in July 2010 to undergo surgery, chemo and radiation.
I have refused to go after seeing another patient having had the same operation. I have started with heat therapy since December 2010 and feel that i might need to reconsider my options.
«1

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
    Welcome
    This is the site to get history from others.

    What I see with the little i know and not being your doctor, my thoughts are.

    - If your not happy with the plan you doctor wants to use, go find another and another until your comfortable with the plan. You must feel good about you plan so that a positive mental attitude can be kept.

    - Plans are about risk - reward. Take a risk and accept what ever reward that is dealt to you.


    What? - I have cancer......... So What? - I have cancer...... Now What? do what you are comfortable and accept the risk you may take.

    Praying for wisdom so you can choose your option and be comfortable with it.

    John

    BTW, 15 years ago I had to choose, I choose to live with a new normal and what came with it and did the whole gambut of radiation and chemo together followed by radiation. I love the reward.
  • Hal61
    Hal61 Member Posts: 655
    #3
    Welcome Pieter
    Hi Pieter, sorry you need to be here and I hope some of us can be helpful to you. Your choice sounds like a very tough one. Are the doctors recommending that your tongue be removed for surgery? Or a portion of your tongue?

    There are people on this board who have chosen not to have radical surgery done, and I'm hoping they will email you or post and tell you of their alternative treatments. A brave young man also has posted here who had his tongue removed, and he makes music, has a lot of great recipes, and enjoys his life. A number of people here have had half of the tongue tissue removed and have adapted to that.

    I'm sorry If I've overstated your case, but can only tell from your post that your choice sounds like a hard one. I'm one of the lucky ones for now. I had chemo, radiation, and neck surgery and have only a few of the standard lasting problems from treatment. My prayers are with you. Stick with us.

    best, Hal
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #4
    Tongue Cancer
    Hi Pieter and welcome to the site.

    I also was diagnosed with BOT in May of 2010. We elected not to have the surgery, instead we went the chemo/rad treatment route. My doctors also did not recommend the surgery option. Its worked out well so far and believe that was the correct choice for our situation. If I remember correctly, the size of my tumor was about the size of your first cut: 30mm x 20mm x 15 mm. Given the size of your current tumor, perhaps surgery is the only option? I would suggest you get a 2nd or 3rd opinion on this to explore all your treatment options.

    Also I am not familiar with the heat therapy you are undergoing. Could you give some information regarding that? Cheers

    Jimbo
  • swartpb
    swartpb Member Posts: 32
    #5
    fisrpotpe said:

    Welcome
    This is the site to get history from others.

    What I see with the little i know and not being your doctor, my thoughts are.

    - If your not happy with the plan you doctor wants to use, go find another and another until your comfortable with the plan. You must feel good about you plan so that a positive mental attitude can be kept.

    - Plans are about risk - reward. Take a risk and accept what ever reward that is dealt to you.


    What? - I have cancer......... So What? - I have cancer...... Now What? do what you are comfortable and accept the risk you may take.

    Praying for wisdom so you can choose your option and be comfortable with it.

    John

    BTW, 15 years ago I had to choose, I choose to live with a new normal and what came with it and did the whole gambut of radiation and chemo together followed by radiation. I love the reward.

    Tung cancer
    Hi John

    Thank you for your words of comfort and prayer.

    I like the idea of being able to choose and not just to accept what comes ones way. Yesterday the pain reached such levels of insanity that one get anxiety attacks and think this is it. But later today the pain got less and one can again consentrate on what needs to be done - will start tomorrow, Monday, to get the wheel rolling in order to get chemo and radiation asap.

    I hope that i also will come back to the site after "choosing to live a new normal" and tell others about "the reward"!

    Pieter
  • swartpb
    swartpb Member Posts: 32
    #6
    Hal61 said:

    Welcome Pieter
    Hi Pieter, sorry you need to be here and I hope some of us can be helpful to you. Your choice sounds like a very tough one. Are the doctors recommending that your tongue be removed for surgery? Or a portion of your tongue?

    There are people on this board who have chosen not to have radical surgery done, and I'm hoping they will email you or post and tell you of their alternative treatments. A brave young man also has posted here who had his tongue removed, and he makes music, has a lot of great recipes, and enjoys his life. A number of people here have had half of the tongue tissue removed and have adapted to that.

    I'm sorry If I've overstated your case, but can only tell from your post that your choice sounds like a hard one. I'm one of the lucky ones for now. I had chemo, radiation, and neck surgery and have only a few of the standard lasting problems from treatment. My prayers are with you. Stick with us.

    best, Hal

    Tung cancer
    Hi Hal, thank you for your words of wisdom and prayer. I will have to stick with you - because this is an amazing site. So many true stories - its "wonderful and delightful" said with respect, to know that one is not alone in this situation. Survival is not the keyword but the only word!

    Regards
    Pieter
  • swartpb
    swartpb Member Posts: 32
    #7
    Jimbo55 said:

    Tongue Cancer
    Hi Pieter and welcome to the site.

    I also was diagnosed with BOT in May of 2010. We elected not to have the surgery, instead we went the chemo/rad treatment route. My doctors also did not recommend the surgery option. Its worked out well so far and believe that was the correct choice for our situation. If I remember correctly, the size of my tumor was about the size of your first cut: 30mm x 20mm x 15 mm. Given the size of your current tumor, perhaps surgery is the only option? I would suggest you get a 2nd or 3rd opinion on this to explore all your treatment options.

    Also I am not familiar with the heat therapy you are undergoing. Could you give some information regarding that? Cheers

    Jimbo

    Togue cancer
    Hi Jimbo

    The heat treatment is a verimark product that i bought from the shelf, a plastick bag 40 x 15 mm with a liquid, what looks like silicon, inside which heats up by pressing a metal object inside the liquid, one can also get another type for cold or an ice pack. I'm putting the heat pack on my neck and above the gums for 40 - 60 minutes. In the beginning i thought it reduced the tumor but apparently only the swelling. It also reduces the pain. But the tumor is still there and i need to get rid of it asap.

    I hope that chemo and radiation, with surgery of what remains at the end, can do the trick for me. I still need to find a dr that will do it for me that way.

    Regards
    Pieter
  • debbieg5
    debbieg5 Member Posts: 167
    #8
    swartpb said:

    Togue cancer
    Hi Jimbo

    The heat treatment is a verimark product that i bought from the shelf, a plastick bag 40 x 15 mm with a liquid, what looks like silicon, inside which heats up by pressing a metal object inside the liquid, one can also get another type for cold or an ice pack. I'm putting the heat pack on my neck and above the gums for 40 - 60 minutes. In the beginning i thought it reduced the tumor but apparently only the swelling. It also reduces the pain. But the tumor is still there and i need to get rid of it asap.

    I hope that chemo and radiation, with surgery of what remains at the end, can do the trick for me. I still need to find a dr that will do it for me that way.

    Regards
    Pieter

    take action
    Pieter, I'm glad to hear you are going to take some action even though you know that these treatmeants will come with problems of their own. You didn't say exactly where on the tongue the cancer was or what they wanted to remove surgically. I know if it is whole tongue, that is very radical surgery.

    My husband was diagnosed with BOT cancer in Sept 2007. It had mets to the lymph nodes on one side. He received 40 rads and a few chemos but no surgery. Everything appeared to be good but the cancer returned April 2010. First showed up around larynx and then again at BOT. We would have had to make a decision on total tongue removal but PET showed a new spot in lung. He fought desparately but didn't make it and passed away last month. Please stay on top of things and tell your doctor ANYTHING that seems out of the ordinary to you.
    Best of luck to you as you travel this hard road.
    Debbie
  • swartpb
    swartpb Member Posts: 32
    #9
    debbieg5 said:

    take action
    Pieter, I'm glad to hear you are going to take some action even though you know that these treatmeants will come with problems of their own. You didn't say exactly where on the tongue the cancer was or what they wanted to remove surgically. I know if it is whole tongue, that is very radical surgery.

    My husband was diagnosed with BOT cancer in Sept 2007. It had mets to the lymph nodes on one side. He received 40 rads and a few chemos but no surgery. Everything appeared to be good but the cancer returned April 2010. First showed up around larynx and then again at BOT. We would have had to make a decision on total tongue removal but PET showed a new spot in lung. He fought desparately but didn't make it and passed away last month. Please stay on top of things and tell your doctor ANYTHING that seems out of the ordinary to you.
    Best of luck to you as you travel this hard road.
    Debbie

    I have taken action
    Hi Debbie, its so sad to read that your husband passed away. Thank you for your words of advice and kindness. I saw the oncologist this morning and scheduled chemo from the 1 st March and hopefully start with rad early May. Well, this is it! I'm very positive at this stage and hope it will stay the same when i start with the treatment. God bless all!!!
  • donna340
    donna340 Member Posts: 72
    #10
    Wow, almost the same story!
    I to have had tongue cancer about 7 years ago. I also had surgery alone. Thru the years many biospies on spots that return. In november of last year it came back and now again. I have schedule surgery for March 8th, 2011. Hoping that they dont take to much.

    I'm just as scared as you. I sit and think about not being able to talk or eat. But you have to dig deep and fight the fight. Don't just give up! Express your feelings / thoughts to the doctors and nurses they will help you thru this. Please do not wait to long. Our type of cancer spreads very fast and we already have very little options to choose from.

    And just remember we are all here 24 hours a day 7 days a week!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Peter
    Hi Peter

    Sorry to hear this stuff is back again, my C was NPC and I had it 3 times, the last time I did not do any Rad or Chemo. I know a lot of people who are doing heat treatment and getting good results from it, but the heat treatment that they are doing is sauna baths. My advice is that Cancer is nothing to fool around with, if you are going to do Alternative treatment or Conventional treatment get professional help with it and don't try to do it on your own, it is a killer.

    Take care my friend
    Hondo
  • swartpb
    swartpb Member Posts: 32
    #12
    donna340 said:

    Wow, almost the same story!
    I to have had tongue cancer about 7 years ago. I also had surgery alone. Thru the years many biospies on spots that return. In november of last year it came back and now again. I have schedule surgery for March 8th, 2011. Hoping that they dont take to much.

    I'm just as scared as you. I sit and think about not being able to talk or eat. But you have to dig deep and fight the fight. Don't just give up! Express your feelings / thoughts to the doctors and nurses they will help you thru this. Please do not wait to long. Our type of cancer spreads very fast and we already have very little options to choose from.

    And just remember we are all here 24 hours a day 7 days a week!

    Surgery is no option for me
    Hi Donna, thank you for your message. What can I say - birds of the same feather!
    I, on the otherhand opted not to go for surgery - my instincts tell me that with or without surgery, there are no guarantees! Its like saying - if you worry you will die, if you don't worry you will also die, so why worry! If there is no guarantee, why will I want to put myself through all the suffering of a severe operation? I know i'm not going to feel better immediately after surgery, because then, I will have to go through a life changing exercise to pick up the pieces of what has been left over and try to adapt to my new circumstances. The dr's say i opt for 2nd best - i disagree. I feel satisfied with my choice and belief that chemo and rad will give me a better chance to add a couple of years to my life. Bod bless you and me Donna - you are now included in my thoughts and prayers, regards Pieter
  • swartpb
    swartpb Member Posts: 32
    #13
    Hondo said:

    Hi Peter
    Hi Peter

    Sorry to hear this stuff is back again, my C was NPC and I had it 3 times, the last time I did not do any Rad or Chemo. I know a lot of people who are doing heat treatment and getting good results from it, but the heat treatment that they are doing is sauna baths. My advice is that Cancer is nothing to fool around with, if you are going to do Alternative treatment or Conventional treatment get professional help with it and don't try to do it on your own, it is a killer.

    Take care my friend
    Hondo

    Heat treatment
    Hi Hondo

    Thanks for the advice! I'm going for ozone treatment inside a cubicle which heats up to temperatures of +/- 40 degrees Celcius, since July 2010. I do feel good physically and mentally afterwards but my tumor is still there. I do belief that chemo and rad will do the trick, but like they say - there are no guarantees. I think that if and when one gets a second or 3rd or 4th etc chance that one needs to appreciate life more and see it as part of our growing up process.

    As long as we are here on earth we are given an opportunity to love thy self, love God and to love our neighbours.

    Thanx again Hono!
  • swartpb
    swartpb Member Posts: 32
    #14
    swartpb said:

    Heat treatment
    Hi Hondo

    Thanks for the advice! I'm going for ozone treatment inside a cubicle which heats up to temperatures of +/- 40 degrees Celcius, since July 2010. I do feel good physically and mentally afterwards but my tumor is still there. I do belief that chemo and rad will do the trick, but like they say - there are no guarantees. I think that if and when one gets a second or 3rd or 4th etc chance that one needs to appreciate life more and see it as part of our growing up process.

    As long as we are here on earth we are given an opportunity to love thy self, love God and to love our neighbours.

    Thanx again Hono!

    Trust in God
    "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him; He will make your paths straight." Proverbs 3:5-6

    This is a message I received today!

    God bless all of you on this site!

    Pieter
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    swartpb said:

    Heat treatment
    Hi Hondo

    Thanks for the advice! I'm going for ozone treatment inside a cubicle which heats up to temperatures of +/- 40 degrees Celcius, since July 2010. I do feel good physically and mentally afterwards but my tumor is still there. I do belief that chemo and rad will do the trick, but like they say - there are no guarantees. I think that if and when one gets a second or 3rd or 4th etc chance that one needs to appreciate life more and see it as part of our growing up process.

    As long as we are here on earth we are given an opportunity to love thy self, love God and to love our neighbours.

    Thanx again Hono!

    G'day Pieter
    Ozone is some great stuff I drink a glass of it twice a week for maintenance, I have a machine that makes it at home. Will keep you in prayer on your heat treatment

    Still in Gods workshop
    Hondo
  • swartpb
    swartpb Member Posts: 32
    #16
    Hondo said:

    G'day Pieter
    Ozone is some great stuff I drink a glass of it twice a week for maintenance, I have a machine that makes it at home. Will keep you in prayer on your heat treatment

    Still in Gods workshop
    Hondo

    Hi Hondo

    The dr phoned to reschedule my chemo. They want to start the 22nd Feb - next week Tuesday! Whow, all of a sudden, my bravade is gone, no more positive thoughts and it feels scary!

    Thank you for your prayers Hondo - you and all the people on this site is also in my prayers!

    God bless

    Pieter
  • donna340
    donna340 Member Posts: 72
    #17
    swartpb said:

    Hi Hondo

    The dr phoned to reschedule my chemo. They want to start the 22nd Feb - next week Tuesday! Whow, all of a sudden, my bravade is gone, no more positive thoughts and it feels scary!

    Thank you for your prayers Hondo - you and all the people on this site is also in my prayers!

    God bless

    Pieter

    Good Luck
    Good Luck Pieter! Sending lots of prayers and positive engery your way.
  • swartpb
    swartpb Member Posts: 32
    #18
    donna340 said:

    Good Luck
    Good Luck Pieter! Sending lots of prayers and positive engery your way.

    Spirit has lifted
    Hi Donna,

    Thank you for your prayers and positive energy.
    Today I feel much better and your positive energy Donna, has lifted my spirit again. Thank you so much!
    It's a roller-coaster-ride, one day up the next day down - hey, at least life is not boring. I enjoy my friend who used to say: "If nothing is going to happen today, then things will stay the same". It's not even funny? LoL
    I'm not looking forward to the hospitalization from Tuesday next week - but I suppose I need to start with the curing of my tongue, otherwize it will stay the same or even get worse. I already have to apologize when I talk to people on the phone, in case they think I had too much to drink for the day.
    God bless us all !!!!!!!

    Pieter
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #19
    Chemo really works fast
    Peter, My wife Connie was diagnosed with base of tongue cancer which spread to 2 lymph nodes in her neck. We never knew this until the lymph nodes in her neck swoll to the size of walnuts. At the beginning we wanted her surgeon to do a neck disection and remove the lymph nodes and our hopes really sunk when she told us that she would not do surgury until after Connie did 9 weeks of chemotherapy, followed by 33 radiation treatments. Connie started chemo the day after Thanksgiving 11-26-10. She did induction chemo which is a combination of several different drugs, adds up to a really strong dose of chemo. The miracle was the lymph nodes shrunk to normal size in about 4 days. Her neck had returned to normal and I was confident that the tumor on her tongue had also shrunk. The radiation then trys to kill any other cancer cells that might still be around. Our surgeon said that she would not do surgury unless their was still something there after throwing the works at the tumors with chemo and radiation. Connie was also HPV positive which is easier to treat and has a much better prognosis than tobacco related cancer and if you don't know if you are HPV positive you will want to find out. Good luck with this but don't rely on luck, get your treatment starting asap. Never give up, your friend, Homer Price
  • swartpb
    swartpb Member Posts: 32
    #20
    connieprice1 said:

    Chemo really works fast
    Peter, My wife Connie was diagnosed with base of tongue cancer which spread to 2 lymph nodes in her neck. We never knew this until the lymph nodes in her neck swoll to the size of walnuts. At the beginning we wanted her surgeon to do a neck disection and remove the lymph nodes and our hopes really sunk when she told us that she would not do surgury until after Connie did 9 weeks of chemotherapy, followed by 33 radiation treatments. Connie started chemo the day after Thanksgiving 11-26-10. She did induction chemo which is a combination of several different drugs, adds up to a really strong dose of chemo. The miracle was the lymph nodes shrunk to normal size in about 4 days. Her neck had returned to normal and I was confident that the tumor on her tongue had also shrunk. The radiation then trys to kill any other cancer cells that might still be around. Our surgeon said that she would not do surgury unless their was still something there after throwing the works at the tumors with chemo and radiation. Connie was also HPV positive which is easier to treat and has a much better prognosis than tobacco related cancer and if you don't know if you are HPV positive you will want to find out. Good luck with this but don't rely on luck, get your treatment starting asap. Never give up, your friend, Homer Price

    Homer encouragement!
    Hi Homer

    Thank you so much for sharing your story with me. I realise now, more than ever that miracles do happen. Enjoy life with your good wife, she is special and so are you!

    God bless
    Pieter
  • honeybelle22
    honeybelle22 Member Posts: 70
    #21
    donna340 said:

    Wow, almost the same story!
    I to have had tongue cancer about 7 years ago. I also had surgery alone. Thru the years many biospies on spots that return. In november of last year it came back and now again. I have schedule surgery for March 8th, 2011. Hoping that they dont take to much.

    I'm just as scared as you. I sit and think about not being able to talk or eat. But you have to dig deep and fight the fight. Don't just give up! Express your feelings / thoughts to the doctors and nurses they will help you thru this. Please do not wait to long. Our type of cancer spreads very fast and we already have very little options to choose from.

    And just remember we are all here 24 hours a day 7 days a week!

    Praying for you
    Donna, I am thinking of you ..knowing the fears you have. I am going for a pet scan today. I'm afraid I will be facing the same situation. I had a tumor beg of last year but radiation and chemo got rid of it. Now, I have discovered two small lumps on side and toward the front of my tongue. When, you feel up to it please email me. I'll pray with you and will be thinking of you tomorrow.

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