scared...my dad was diagnosed with stage four

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arjenkins
arjenkins Member Posts: 36
edited March 2014 in Head and Neck Cancer #1
I am so glad I stumbled upon this site. My dad who is 67 was diagnosed with
Stage four base of tongue cancer on Friday. Immediately
I was devastated and everything I read on the internet was
Doom and gloom. So good to see that there is hope. I really need
A site like this as I am alone in this journey with my dad
And I need positive notes so I can stay positive for my dad.
We will be going to wake forest Baptist medical comprehensive
Cancer center in north carolina next week. My dad never smoked or drank
So this diagnosis is surprising.
So many if the posts are great as you say stay positive and trust
God and let the doctors do their work.

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
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    Talk to the doctors
    Ask your Dad's doctors to test his tumors for the presence of the HPV virus. That is a major cause of tongue and tonsil cancers in the absence of a history of smoking and drinking. HPV-positive would be a very good thing, as HPV-positive cancers respond very well to treatment.

    I was diagnosed with a "stage 4" base-of-tongue cancer last January. I am HPV-positive. The reason my cancer was considered stage 4 was that it had metastisized to lymph nodes on both sides of my neck. "Jumping the midline" of the body is one way that a cancer can end up being ranked as a "4." But, as my doctor told me, the tongue is a midline structure, so tongue cancers are very prone to doing that. While it is technically a stage 4, it is not so worrisome.

    This is the cancer that Michael Douglas has, and he was staged at 4 also. I recall reading that he was HPV positive as well. Which means that the cause of his cancer was far more likely the HPV, rather than his history of smoking and drinking. He was given a 70% chance of cure, owing to his history. I don't smoke or drink. I was given a 95% chance at a complete cure. Almost six months out from treatment and things are looking good.

    You've come to a good place to ask questions. Good luck in your journey.

    Deb
  • Pumakitty
    Pumakitty Member Posts: 652
    #3
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    I understand
    My 72 year old father was diagnosed in March of this year with the same thing. He had 35 rad treatments and 6 chemo. He finished in June and so far is doing great. He was one of the lucky ones and did not suffers to awfully much during treatment. Please do not read all of that horrible stuff on the internet. I did and have found it mostly to be wrong or out of date.

    The people on this site is amazing. My family could not have gotten through this without them. Never be afraid to post a question, thought or concern or just to share you fears. Please know your father and you can get through this difficult journey and come out on the other side.

    Please keep us updated on how the appointment go and what type of treatment they decided on.

    Kathy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
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    D Lewis said:

    Talk to the doctors
    Ask your Dad's doctors to test his tumors for the presence of the HPV virus. That is a major cause of tongue and tonsil cancers in the absence of a history of smoking and drinking. HPV-positive would be a very good thing, as HPV-positive cancers respond very well to treatment.

    I was diagnosed with a "stage 4" base-of-tongue cancer last January. I am HPV-positive. The reason my cancer was considered stage 4 was that it had metastisized to lymph nodes on both sides of my neck. "Jumping the midline" of the body is one way that a cancer can end up being ranked as a "4." But, as my doctor told me, the tongue is a midline structure, so tongue cancers are very prone to doing that. While it is technically a stage 4, it is not so worrisome.

    This is the cancer that Michael Douglas has, and he was staged at 4 also. I recall reading that he was HPV positive as well. Which means that the cause of his cancer was far more likely the HPV, rather than his history of smoking and drinking. He was given a 70% chance of cure, owing to his history. I don't smoke or drink. I was given a 95% chance at a complete cure. Almost six months out from treatment and things are looking good.

    You've come to a good place to ask questions. Good luck in your journey.

    Deb

    Hi arjenkins
    I will leave the advice up to Deb & Kathy as my cancer is a little different NPC. Here on CSN we are all one family and we stay together and prayer together for each other and my prayers will be for both you and your Dad. Welcome and please plan to become part of our family.
  • ekdennie
    ekdennie Member Posts: 238 Member
    #5
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    keep positive!
    dear arjenkins,
    what you read online will only scare you. a lot of what is posted online is inaccurate. a lot have really old statistics. Make sure you go to good cancer websites like cancer.org or american cancer society for your information. also make lists of questions that you have for your dad's doctor and ask them all. they are expecting and want questions. stage 4 doesn't have to mean all doom and gloom. ask for specifics as to what type of cancer, the likely causes, and if it is stage 4a or stage 4b...it makes a difference. you also need to ask what grade the tumor was. you will get these letters with numbers where I have *'s (T*N*M*). then ask what are his options. surgery, radiation, chemo, or a combo of two or all three. ask do we need to be aggressive or do we need to go in conservatively. don't ask for life expectancy...just because he has cancer that doesn't mean there is a time limit to his life. I am 31 years old and I had a stage 4a (clinically), stage 2 (post-biopsy) mucoepidermoid carcinoma removed from the roof of my mouth. I have had surgery to remove the tumor and 30 radiation treatments to insure it doesn't come back. I never smoke and drank maybe a glass or two of wine every four or five months. my type of tumor can just happen to anyone regardless of age.
    don't lose hope. hope will help you and your dad through this tough time. when you are on here, you are not alone. there are a lot of people who would love to help support you and your dad through all of this. we are here for the good times and for the tougher ones. there will be times when you want to scream...I recommend screaming it out. I go to my car to let it all out!
    as for doctors...ask your doctor if they are the best in the region. if not, then ask who they would send their family members to. ask if they have experience with this type of tumor. ask, ask, ask! You don't have to have a doctor with great bedside manner, but you want to know that you are going to the best that you can get.
    there is always hope and there is always prayer. have faith that your dad will get the care he needs. try to help him stay positive. a positive attitude really helps the recovery process go more smoothly. Think to the future, while tending to today.

    best of luck! you and your dad will be in my prayers. sending you a giant HUG!
    elizabeth
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Options
    D Lewis said:

    Talk to the doctors
    Ask your Dad's doctors to test his tumors for the presence of the HPV virus. That is a major cause of tongue and tonsil cancers in the absence of a history of smoking and drinking. HPV-positive would be a very good thing, as HPV-positive cancers respond very well to treatment.

    I was diagnosed with a "stage 4" base-of-tongue cancer last January. I am HPV-positive. The reason my cancer was considered stage 4 was that it had metastisized to lymph nodes on both sides of my neck. "Jumping the midline" of the body is one way that a cancer can end up being ranked as a "4." But, as my doctor told me, the tongue is a midline structure, so tongue cancers are very prone to doing that. While it is technically a stage 4, it is not so worrisome.

    This is the cancer that Michael Douglas has, and he was staged at 4 also. I recall reading that he was HPV positive as well. Which means that the cause of his cancer was far more likely the HPV, rather than his history of smoking and drinking. He was given a 70% chance of cure, owing to his history. I don't smoke or drink. I was given a 95% chance at a complete cure. Almost six months out from treatment and things are looking good.

    You've come to a good place to ask questions. Good luck in your journey.

    Deb

    Ops two of the same post,
    Ops two of the same post, sorry
  • arjenkins
    arjenkins Member Posts: 36
    #7
    Options
    ekdennie said:

    keep positive!
    dear arjenkins,
    what you read online will only scare you. a lot of what is posted online is inaccurate. a lot have really old statistics. Make sure you go to good cancer websites like cancer.org or american cancer society for your information. also make lists of questions that you have for your dad's doctor and ask them all. they are expecting and want questions. stage 4 doesn't have to mean all doom and gloom. ask for specifics as to what type of cancer, the likely causes, and if it is stage 4a or stage 4b...it makes a difference. you also need to ask what grade the tumor was. you will get these letters with numbers where I have *'s (T*N*M*). then ask what are his options. surgery, radiation, chemo, or a combo of two or all three. ask do we need to be aggressive or do we need to go in conservatively. don't ask for life expectancy...just because he has cancer that doesn't mean there is a time limit to his life. I am 31 years old and I had a stage 4a (clinically), stage 2 (post-biopsy) mucoepidermoid carcinoma removed from the roof of my mouth. I have had surgery to remove the tumor and 30 radiation treatments to insure it doesn't come back. I never smoke and drank maybe a glass or two of wine every four or five months. my type of tumor can just happen to anyone regardless of age.
    don't lose hope. hope will help you and your dad through this tough time. when you are on here, you are not alone. there are a lot of people who would love to help support you and your dad through all of this. we are here for the good times and for the tougher ones. there will be times when you want to scream...I recommend screaming it out. I go to my car to let it all out!
    as for doctors...ask your doctor if they are the best in the region. if not, then ask who they would send their family members to. ask if they have experience with this type of tumor. ask, ask, ask! You don't have to have a doctor with great bedside manner, but you want to know that you are going to the best that you can get.
    there is always hope and there is always prayer. have faith that your dad will get the care he needs. try to help him stay positive. a positive attitude really helps the recovery process go more smoothly. Think to the future, while tending to today.

    best of luck! you and your dad will be in my prayers. sending you a giant HUG!
    elizabeth

    thank you
    Thank you so much for the postitive words and inspiration. I am blessed to find this support. I will definitely need it as I go through this journey with my Dad. He is a more personal person whereas I have to discuss and reach out to people. We each have our own ways of coping. I can't thank you and the others who responded enough....I feel a little better.

    Thanks,
    Andrea
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #8
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    Bad Internet!
    AR:

    Hi:

    Welcome to CSN. I don't know what I'd do without my csn buds! Let me tell you from experience; try to stay off the internet; it can scare you to death needlessly. And although Stage IV is scary no doubt; it doesn't necessarily mean doom and gloom. So glad you're with and my prayers to you and your Dad!

    Jan Trinks (aka Basketcase!)
  • Pam M
    Pam M Member Posts: 2,196
    #9
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    Welcome
    Andrea,

    I, too was diagnosed Stage four base of tongue cancer (last October). I also googled stats on it, and was beside myself. I worked on convincing myself that statistics are numbers, not people. Not me. The great people on this site helped a lot. Treatment isn't fun; it can be miserable and scary at times, but it's doable - look at all of us who've made it through. Hey, I saw a gossip paper at the grocery today that said that Michael Douglas (big actor who had base of tongue ccancer) has even regained ten pounds - and he hasn't been out of treatment very long at all. Sorry your dad has to go through this, but glad he's got you in his corner.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #10
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    Welcome
    Hi Andrea, I'm another who was diagnosed with BOT stage 4. My treatment consisted of 35 rads and 3 chemo/cistplatin. I completed treatment end of July and had my 1st post treatment CT scan a few weeks ago which came out clean. I also am not a smoker. I came through treatment with relatively few problems, although I did drop about 20 lbs. Recovery after treatment has been good. This thing is definitely beatable and it begins with a positive outlook. Treatment can and will be rough at times, especially as you get closer to the finish line. It is important to maintain good nutrition, food is medicine. Also I think it is extremely beneficial to try and remain active during treatment. Though fatigue is a common side effect, some daily exercise/walk around the block helps with the fatigue factor. There are many many many helpful folks on this site, as you will see. Cheers

    Jimbo
  • rozaroo
    rozaroo Member Posts: 665
    #11
    Options
    Jimbo55 said:

    Welcome
    Hi Andrea, I'm another who was diagnosed with BOT stage 4. My treatment consisted of 35 rads and 3 chemo/cistplatin. I completed treatment end of July and had my 1st post treatment CT scan a few weeks ago which came out clean. I also am not a smoker. I came through treatment with relatively few problems, although I did drop about 20 lbs. Recovery after treatment has been good. This thing is definitely beatable and it begins with a positive outlook. Treatment can and will be rough at times, especially as you get closer to the finish line. It is important to maintain good nutrition, food is medicine. Also I think it is extremely beneficial to try and remain active during treatment. Though fatigue is a common side effect, some daily exercise/walk around the block helps with the fatigue factor. There are many many many helpful folks on this site, as you will see. Cheers

    Jimbo

    Wellcome Andrea
    I am almost ten month's post for stage four B cancer. I had a feeding tube installed before
    treatment & that helped me immensly. I actually gained weight as hubby was pumping food &
    liquid's in constantly. I kept sipping water & flat gingerale also. I feel that I am doing
    great & surround myself with positive people etc. Your father is fortunate to have you
    caring for him. I wish you both all my best during treatment & recovery.Remember we are all
    here for you.
    Hugg's Roz
  • sportsman
    sportsman Member Posts: 97
    #12
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    Dad's Cancer
    Glad you found this web site as it has been a positive and great benefit to me personally. I am now just almost four years out cancer free from pharyngeal cancer. Mine was diagnosed as Stage Four also. I had a radical neck dissection to remove cancerous lymph nodes and then thirty five radiation treatments with chemo once a week. I was a tremendously healthy fifty eight year old when diagnosed who never smoked, drank or in fact used tobacco of any kind. So I really did not understand how I got this cancer either. You mentioned Wake Forest Baptist Hospital in North Carolina. I am a North Carolinian also and now have all my check ups at Baptist. I was not operated on or did radiation or chemo there but due to the complications I had during my treatment I wish I had. It is a great hospital with caring people on staff. Tell your dad to stay positive and keep his trust in God. This is certainly not a easy journey but he can pull through this. If you need any support you can e-mail me at coachmandavis@yahoo.com as I live in western North Carolina. May God Bless you
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
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    sportsman said:

    Dad's Cancer
    Glad you found this web site as it has been a positive and great benefit to me personally. I am now just almost four years out cancer free from pharyngeal cancer. Mine was diagnosed as Stage Four also. I had a radical neck dissection to remove cancerous lymph nodes and then thirty five radiation treatments with chemo once a week. I was a tremendously healthy fifty eight year old when diagnosed who never smoked, drank or in fact used tobacco of any kind. So I really did not understand how I got this cancer either. You mentioned Wake Forest Baptist Hospital in North Carolina. I am a North Carolinian also and now have all my check ups at Baptist. I was not operated on or did radiation or chemo there but due to the complications I had during my treatment I wish I had. It is a great hospital with caring people on staff. Tell your dad to stay positive and keep his trust in God. This is certainly not a easy journey but he can pull through this. If you need any support you can e-mail me at coachmandavis@yahoo.com as I live in western North Carolina. May God Bless you

    Stage IV.
    I am very glad you found this site. I wish I found it before I started TX. I had SCC unknown primary, stage 4. Had a tongue biopsy, modified neck dissection, 23 lymphnodes and left salivary gland removed, 3 positive. I had radiation only, no chemo because I am also a Fanconi Anemia patient.
    It is scarey but there are many people here that are long term survivors. It was two years in october that I found my swollen lymph node. I ended rads on 5/15/09.

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