Any Idea of Recurrence Rate for my Cancer

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GRAVEY
GRAVEY Member Posts: 83
edited March 2014 in Head and Neck Cancer #1
Im having the typical freak out of "What if this doesnt work" So im tryiing to help ease my mind, and see if anyone knows what the percentage of Recurring cancer after treatments average is. I have/had a T1 Squamous Cell carcinoma that manifested itself in 1 lymph node on the right side of my neck that was removed. I subsequently got the diagnosis of the T1 Squamous at the base of my tongue when they were going in to remove my tonsils, they found the spot on my tongue before they did any cutting, and the Doc decided Immediately to stop the operation and not do any cutting once the spot was found.
I then went through 3 chemos of Cisplatin, and 35 Radiation treatments. Does this treatment sound normal for what I had, and do you know the rate of success for this treatment. ANY info would be greatly appreciated.

GRAVEY

Comments

  • SASH
    SASH Member Posts: 421 Member
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    You really need to talk to doc about recurrence. I was stage 4 and was told there was an 85% chance of recurrence within the first 2 years. I went through 10 chemos of Carboplatin and Pacitaxatere (sp?) with 46 simultaneous rads. I have had no recurrence and it is now going on almost 10 years. You can't always worry about odds and just live. Make sure you keep followup appointments as if you do end up with a recurrence you want it caught earlier than later. I'm still on a 6 month rotation between my surgeon and rad onc.
  • Hondo
    Hondo Member Posts: 6,636 Member
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    From what I read here on CSN about your type of cancer you have a very good chance of being cancer free. As with everything there is always a chance that it will come back but by worrying about it with not help you, it will only depress you and that is not good for your body.

    Open your eyes and look at all the new opportunities that God has giving you and enjoy life. Thanks Him everyday for all the good things he has done and use what you know about cancer to help others who are going through the trials

    My cancer came back three times but I did not worry because I knew I was in my friend Jesus hands and I will continue to be here as long as my savior has need of me.
  • GRAVEY
    GRAVEY Member Posts: 83
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    I have a concern, after my
    I have a concern, after my lymph node was removed and tested and cancer was found, they did a PET/CT on me which came back negative. Now I dont want them to do another one of those as a way to check for my cancer when it didnt work the first time. Is their an outpatient procedure where they could just knock me out with a local or something and look down my throat at my tongue base?
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
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    Gravey,
    I can tell you

    Gravey,

    I can tell you that you aren't the only one that has had a freak out time during all this. At one point in my treatments, I basically had a pity party and was wondering why me. Then I thought it out and figured it was all out of my hands. That was the one and only night that I let that happen.

    Like Dash and Hondo already mentioned. We have to continue to look forward for each day is a true gift. We will always be looking over our shoulders, but make it a glimpse, and look forward to the road ahead. Dash is 10 years out, what a goal to look ahead too. I recently passed my 5 years out of treatment this month. Hondo has had to battle 3 times, geez, he's had a bumpy road.

    These computers are a blessing and the Devil all in the same time. We want to learn as much as possible about what lies ahead, then we see some numbers out there that gets us upset, hence my pity party. A person on another cancer site mentioned that each of us will tackle this disease differently and recover differently, to stay positive. Also mentioned that the data out there is also outdated. Newer treatments have been happening even since my operations.

    I typed allot to basically say, look forward, stay positive and remember a saying my old Drill Instructor told me. There are only 3 things you can't do Marine. " Slam a revolving door, strike a match on a wet bar of soap, and put used toothpaste in a used toothpaste tube, anything else you can do". After 44 years I still keep his words in my head.

    My Best to You and Everyone Here
  • Hondo
    Hondo Member Posts: 6,636 Member
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    GRAVEY said:

    I have a concern, after my
    I have a concern, after my lymph node was removed and tested and cancer was found, they did a PET/CT on me which came back negative. Now I dont want them to do another one of those as a way to check for my cancer when it didnt work the first time. Is their an outpatient procedure where they could just knock me out with a local or something and look down my throat at my tongue base?

    PET/CT

    The best way to be assured that you are clean is with the PET, no one likes lying in there for an hour with there arm above there heads. I believe I heard of an open type PET that can be done if you are afraid of the tube type PET machine. Ask your doctor if he is not too concerned because he has a good PET already he may just use a scope. I just finished my 5th PET scan in December so it has become just a part of my life now every year. Don’t be afraid just believe and keep positive
  • GRAVEY
    GRAVEY Member Posts: 83
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    MarineE5 said:

    Gravey,
    I can tell you

    Gravey,

    I can tell you that you aren't the only one that has had a freak out time during all this. At one point in my treatments, I basically had a pity party and was wondering why me. Then I thought it out and figured it was all out of my hands. That was the one and only night that I let that happen.

    Like Dash and Hondo already mentioned. We have to continue to look forward for each day is a true gift. We will always be looking over our shoulders, but make it a glimpse, and look forward to the road ahead. Dash is 10 years out, what a goal to look ahead too. I recently passed my 5 years out of treatment this month. Hondo has had to battle 3 times, geez, he's had a bumpy road.

    These computers are a blessing and the Devil all in the same time. We want to learn as much as possible about what lies ahead, then we see some numbers out there that gets us upset, hence my pity party. A person on another cancer site mentioned that each of us will tackle this disease differently and recover differently, to stay positive. Also mentioned that the data out there is also outdated. Newer treatments have been happening even since my operations.

    I typed allot to basically say, look forward, stay positive and remember a saying my old Drill Instructor told me. There are only 3 things you can't do Marine. " Slam a revolving door, strike a match on a wet bar of soap, and put used toothpaste in a used toothpaste tube, anything else you can do". After 44 years I still keep his words in my head.

    My Best to You and Everyone Here

    Thanks Marine, Im just
    Thanks Marine, Im just having a rough spell right now, Im only 36, and have a 4 year old and amazing wife. And I want to live, esp. cancer free. I'll have to talk to my doc about some meds. He originally gave me some Xanax, buy Im not anxious, I took one and it pretty much knocked me out. I just need something for my nerves, at least for a little while. For some reason though docs dont like giving things like Valium to men. I need something though........


    Gravey
  • Landranger25
    Landranger25 Member Posts: 210 Member
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    GRAVEY said:

    Thanks Marine, Im just
    Thanks Marine, Im just having a rough spell right now, Im only 36, and have a 4 year old and amazing wife. And I want to live, esp. cancer free. I'll have to talk to my doc about some meds. He originally gave me some Xanax, buy Im not anxious, I took one and it pretty much knocked me out. I just need something for my nerves, at least for a little while. For some reason though docs dont like giving things like Valium to men. I need something though........


    Gravey

    Scope
    Gravey, my Doctor (ENT surgeon) scopes me everytime I see him. I go no more than 4 weeks without him looking at the base of my tongue. He also sticks his hand in my mouth and reaches his finger down my throat to feel around. When my lymph node biopsy came back positive for SCC in the beginning, he scoped me and could see the primary lesion. Since then he has either scoped or used a mirror and light to examine my tongue, throat and/or used his finger. The last time I saw him we had PET/CT in hand (which showed uptake at old lesion site and in right tonsil) He could see nothing with the scope and could feel nothing. CT was all good, only fly in the ointment was PET. Will have another in April to stay on top of things. I see him again first week of February and expect scope and fingers again. (He calls them tortures) I tell him go ahead as I appreciate his diligence. As for your rough spell, get busy with something. Wish I could help more. Good luck.

    Mike
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
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    GRAVEY said:

    Thanks Marine, Im just
    Thanks Marine, Im just having a rough spell right now, Im only 36, and have a 4 year old and amazing wife. And I want to live, esp. cancer free. I'll have to talk to my doc about some meds. He originally gave me some Xanax, buy Im not anxious, I took one and it pretty much knocked me out. I just need something for my nerves, at least for a little while. For some reason though docs dont like giving things like Valium to men. I need something though........


    Gravey

    Gravey,

    I hear you loud and clear. Allot is going on in your mind. But you already stated two good reasons to think positive and look forward. Your 4 year old and amazing wife. All of us here have had a life changing experience. We have a new normal life, side effects of our treatments and how we look at each day.

    Like Landranger mentioned, find something that you like to do and get busy with it and try to take your mind off of what is holding you back now. It isn't easy, as each day we will remind ourselves what we have been through.

    A little thing that I say to myself each morning while I look at myself in the mirror shaving is " Can I be a better person than I was yesterday ". One one knows when our exact time is up. Each day we make choices, we can be happy or sad, smile or mad. Your mind controls how you feel and how you feel conrols how you act. Think positive and hopefully your reactions will be the same.

    My Best to You and Everyone Here
  • train-nut
    train-nut Member Posts: 101
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    Prognosis
    Gravey,

    You may want to have a look at the "National Cancer Institute" website. It's loaded with numbers. If you are (or were) a T1 I think I recall that you're in the 90 to 95 percent remission bracket. However, I suggest not driving yourself crazy with all the figures flying around electronic space. Just plan on "making it". I wish you good health, Rich
  • micktissue
    micktissue Member Posts: 430
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    Scope
    Gravey, my Doctor (ENT surgeon) scopes me everytime I see him. I go no more than 4 weeks without him looking at the base of my tongue. He also sticks his hand in my mouth and reaches his finger down my throat to feel around. When my lymph node biopsy came back positive for SCC in the beginning, he scoped me and could see the primary lesion. Since then he has either scoped or used a mirror and light to examine my tongue, throat and/or used his finger. The last time I saw him we had PET/CT in hand (which showed uptake at old lesion site and in right tonsil) He could see nothing with the scope and could feel nothing. CT was all good, only fly in the ointment was PET. Will have another in April to stay on top of things. I see him again first week of February and expect scope and fingers again. (He calls them tortures) I tell him go ahead as I appreciate his diligence. As for your rough spell, get busy with something. Wish I could help more. Good luck.

    Mike

    Scoped
    LOL Mike, I tell my ENT and all the rest when I get scoped, "You let me worry about the discomfort, just do what you have to do." I also appreciate how positively life changing this process has been for me.

    Throwing out major positive vibes for all.

    Warmly,

    Mick
  • ratface
    ratface Member Posts: 1,337 Member
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    train-nut said:

    Prognosis
    Gravey,

    You may want to have a look at the "National Cancer Institute" website. It's loaded with numbers. If you are (or were) a T1 I think I recall that you're in the 90 to 95 percent remission bracket. However, I suggest not driving yourself crazy with all the figures flying around electronic space. Just plan on "making it". I wish you good health, Rich

    22%
    After hours of research you will find it to be appx. 22%. Now you can look at that two ways. You have a 78% chance of not getting it again. There are lots of variables here but the major one is HPV status having a much less degree of recurrence. Up to two years post treatment is the most critical timeframe. Make it two years and your odds go up. Between 2-5 years your odds start to get better, somewhere around 85% survival at five years. From this point forward your odds start to decline again because of a function of statistics that the more time you have the more time you have for the cancer to come back, more time = more probability. Your first hurdle is the two year mark. Don't worry about the rest for now.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    ratface said:

    22%
    After hours of research you will find it to be appx. 22%. Now you can look at that two ways. You have a 78% chance of not getting it again. There are lots of variables here but the major one is HPV status having a much less degree of recurrence. Up to two years post treatment is the most critical timeframe. Make it two years and your odds go up. Between 2-5 years your odds start to get better, somewhere around 85% survival at five years. From this point forward your odds start to decline again because of a function of statistics that the more time you have the more time you have for the cancer to come back, more time = more probability. Your first hurdle is the two year mark. Don't worry about the rest for now.

    "I don't think it's here to deliver the mail"
    I assume that you mean by 22%, RF, the odds of a recurrence? And that the 78% figure is the most reliable internet measure you have found for being completely cancer-free for the remainder of one's life?

    If that is the case (and I hope it is because I admire the diligence and intellect typically associated with your posts), I would suggest that the numbers train-nut offers from NCI are perhaps in line with your own.

    I say this for a couple of reasons, the first being that I was provided those same numbers (90 - 95% survival rate) when I was diagnosed with stage 3 SCC. That was in the fall of 2005. I am still here and as of today cancer-free (although there admittedly was that nasty go-round with SCC in the lung in 07-08).

    The second, and probably more up your alley as a numbers guy, is that stats are very complicated and do not really answer the question unless the question is most carefully crafted.

    To wit, if I ask what the chances are of a cancer recurrence after undergoing the treatment for THIS cancer, the question is a very weak one.

    We have to consider the reasons why we acquired this particular cancer, for example: was it genetic? Was it behavioral? Was it environmental? Was it a combination of these or other factors?

    We have to consider, based on that answer, what we can do to modify the conditions that caused the cancer, and whether we are willing to do so or are capable of doing so.

    Further, and this has a serious impact, the question does not specifically require that any future cancer be directly associated with this one. That is to say, the chances of getting cancer in some other part of the body completely unrelated to this cancer will certainly negatively impact the odds of living a cancer-free life following treatment, despite our best efforts: men tend to get prostate cancer, if they live long enough, after all, or so it has been reported.

    Ultimately, as you and others suggest, 'Red means run, son, numbers add up to nothing'.

    It is imperative to do what is best, first, to beat the disease. It is important, next, to desist from any life choices that instigate the disease, and it is finally crucial that one adopt healthy habits.

    Take care,

    Joe
  • fishingirl
    fishingirl Member Posts: 188
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    "I don't think it's here to deliver the mail"
    I assume that you mean by 22%, RF, the odds of a recurrence? And that the 78% figure is the most reliable internet measure you have found for being completely cancer-free for the remainder of one's life?

    If that is the case (and I hope it is because I admire the diligence and intellect typically associated with your posts), I would suggest that the numbers train-nut offers from NCI are perhaps in line with your own.

    I say this for a couple of reasons, the first being that I was provided those same numbers (90 - 95% survival rate) when I was diagnosed with stage 3 SCC. That was in the fall of 2005. I am still here and as of today cancer-free (although there admittedly was that nasty go-round with SCC in the lung in 07-08).

    The second, and probably more up your alley as a numbers guy, is that stats are very complicated and do not really answer the question unless the question is most carefully crafted.

    To wit, if I ask what the chances are of a cancer recurrence after undergoing the treatment for THIS cancer, the question is a very weak one.

    We have to consider the reasons why we acquired this particular cancer, for example: was it genetic? Was it behavioral? Was it environmental? Was it a combination of these or other factors?

    We have to consider, based on that answer, what we can do to modify the conditions that caused the cancer, and whether we are willing to do so or are capable of doing so.

    Further, and this has a serious impact, the question does not specifically require that any future cancer be directly associated with this one. That is to say, the chances of getting cancer in some other part of the body completely unrelated to this cancer will certainly negatively impact the odds of living a cancer-free life following treatment, despite our best efforts: men tend to get prostate cancer, if they live long enough, after all, or so it has been reported.

    Ultimately, as you and others suggest, 'Red means run, son, numbers add up to nothing'.

    It is imperative to do what is best, first, to beat the disease. It is important, next, to desist from any life choices that instigate the disease, and it is finally crucial that one adopt healthy habits.

    Take care,

    Joe

    Perfect sense Joe! No one
    Perfect sense Joe! No one knows FOR SURE the probability of any cancer. I did order online, the book, The Anti-Cancer Life by David Servan-Schreiber. In which was so recommended. I read great reviews online about it too:) I'll let folks know more about it when I've read it. It will be helpful with the nutritional end of it too.

    Cindy
  • ratface
    ratface Member Posts: 1,337 Member
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    Perfect sense Joe! No one
    Perfect sense Joe! No one knows FOR SURE the probability of any cancer. I did order online, the book, The Anti-Cancer Life by David Servan-Schreiber. In which was so recommended. I read great reviews online about it too:) I'll let folks know more about it when I've read it. It will be helpful with the nutritional end of it too.

    Cindy

    We can do our part
    "It is imperative to do what is best, first, to beat the disease. It is important, next, to desist from any life choices that instigate the disease, and it is finally crucial that one adopt healthy habits."

    Joe

    What you stated is known as the "Field of Cannonization Theory" Experts believe that once the envirenment for the growth of cancer has been established it is easier for the cancer to take root a second time. As an analogy, consider tissue as farmland and cancer as the seed. Once fertile ground has been established a seed will be more likely to take root. This is really true of Head and Neck cancer from smoking and drinking. The alcohol erodes the tissue and gives the carcinogen a foothold in the field. After treatment the field remains eroded and the continuation of that lifestyle would be a probable recurrance. I think this is why HPV has such a low recurrance rate, because the field of cannonization does not exist. Your comments are then supportive of the theory.

    Just for clarification the stats are strictly for head and neck cancer and even here there are countless variables: Location of primary, size of primary, spread of disease, HPV or not derived, age, physical and mental condition, treatment modalities and response to same, insurance, location and expertise of treatment facility, expertise of surgeon, oncologist etc.

    I agree that lifestyle changes can have an impact on recurrence but so can treatment. If our doctors allow one cancer cell to escape then they have left one seed to germinate. Therefore we must be aggressive in advocating for our own treatment options.
  • Jeff2159
    Jeff2159 Member Posts: 108
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    "I don't think it's here to deliver the mail"
    I assume that you mean by 22%, RF, the odds of a recurrence? And that the 78% figure is the most reliable internet measure you have found for being completely cancer-free for the remainder of one's life?

    If that is the case (and I hope it is because I admire the diligence and intellect typically associated with your posts), I would suggest that the numbers train-nut offers from NCI are perhaps in line with your own.

    I say this for a couple of reasons, the first being that I was provided those same numbers (90 - 95% survival rate) when I was diagnosed with stage 3 SCC. That was in the fall of 2005. I am still here and as of today cancer-free (although there admittedly was that nasty go-round with SCC in the lung in 07-08).

    The second, and probably more up your alley as a numbers guy, is that stats are very complicated and do not really answer the question unless the question is most carefully crafted.

    To wit, if I ask what the chances are of a cancer recurrence after undergoing the treatment for THIS cancer, the question is a very weak one.

    We have to consider the reasons why we acquired this particular cancer, for example: was it genetic? Was it behavioral? Was it environmental? Was it a combination of these or other factors?

    We have to consider, based on that answer, what we can do to modify the conditions that caused the cancer, and whether we are willing to do so or are capable of doing so.

    Further, and this has a serious impact, the question does not specifically require that any future cancer be directly associated with this one. That is to say, the chances of getting cancer in some other part of the body completely unrelated to this cancer will certainly negatively impact the odds of living a cancer-free life following treatment, despite our best efforts: men tend to get prostate cancer, if they live long enough, after all, or so it has been reported.

    Ultimately, as you and others suggest, 'Red means run, son, numbers add up to nothing'.

    It is imperative to do what is best, first, to beat the disease. It is important, next, to desist from any life choices that instigate the disease, and it is finally crucial that one adopt healthy habits.

    Take care,

    Joe

    I Can Relate
    Sitting in bed at the hospital trying to recover from my tenth mouth operation since 1996.Yes it is field cancer, like dadelions in a field just ready to come to life. Have had recent surguries in Jan 2011, Dec 2011, Jan 2012 and now June 2012. Oh and did i mention the kidney cancer I had this past March with mets to the lungs? Its been quite an ordeal and I have never smoked or chewed. This current tongue cancer has been tough because i got a trach tube for the first time and don't wish this on anyone. Can't wait for this to be removed in 2 DAYS and go home
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Jeff2159 said:

    I Can Relate
    Sitting in bed at the hospital trying to recover from my tenth mouth operation since 1996.Yes it is field cancer, like dadelions in a field just ready to come to life. Have had recent surguries in Jan 2011, Dec 2011, Jan 2012 and now June 2012. Oh and did i mention the kidney cancer I had this past March with mets to the lungs? Its been quite an ordeal and I have never smoked or chewed. This current tongue cancer has been tough because i got a trach tube for the first time and don't wish this on anyone. Can't wait for this to be removed in 2 DAYS and go home

    WOW..
    Sorry for the ordeal that you have gone through...

    Hopefully this will be the last and you can live a long and healthy life.

    Best,
    John
  • mls351w
    mls351w Member Posts: 90
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    Skiffin16 said:

    WOW..
    Sorry for the ordeal that you have gone through...

    Hopefully this will be the last and you can live a long and healthy life.

    Best,
    John

    my thoughts
    To Gravey,
    I had exactly same condition and treatment as you. My rad onc said that this was one of the easiest to treat and had one of the highest success rates. She said I had an 85-90% chance of full recovery. It has been 6 years and I am C free with no real complications. I see my rad, chemo, and ENT once a year for a check-up. My ENT said he does not schedule any scans after 2 1/2 years.(there is the magic 2 year number, I guess) My rad onc likes me to have a head/neck, chest, abdonum, and lower abdonum scan once a year just before I see her.
    It sounds like you do not have serious complications, so enjoy your health and don't beat yourself down with useless worry. Best wishes.

    To soccerfreak Joe,
    I will never think of that song the same. It has now moved to the top of my listening list.
    All I have to say is;
    "I hope he didn't come to stay" and "Shelter me from the powder and the finger"
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    mls351w said:

    my thoughts
    To Gravey,
    I had exactly same condition and treatment as you. My rad onc said that this was one of the easiest to treat and had one of the highest success rates. She said I had an 85-90% chance of full recovery. It has been 6 years and I am C free with no real complications. I see my rad, chemo, and ENT once a year for a check-up. My ENT said he does not schedule any scans after 2 1/2 years.(there is the magic 2 year number, I guess) My rad onc likes me to have a head/neck, chest, abdonum, and lower abdonum scan once a year just before I see her.
    It sounds like you do not have serious complications, so enjoy your health and don't beat yourself down with useless worry. Best wishes.

    To soccerfreak Joe,
    I will never think of that song the same. It has now moved to the top of my listening list.
    All I have to say is;
    "I hope he didn't come to stay" and "Shelter me from the powder and the finger"

    Hmmm....
    Though this thread is old, I love the information (here I go again, statistics type guy).

    First of all, Sash, I think (or I should say I hope) you mis-spoke when you said your doctor said there was an 85% chance of recurrence in the first 2 years. I "think" you meant 85% of all reccurence occurs in the first 2 years. That would be more in line with what my ENT told me.

    My ENT told me the recurrence rate (he did not say my cancer type) for H&N with a lymph node involved was 35-50%. He also stated the recurrence rate if it was going to happen, most occured (90%) within the first 2 years.

    I till don't like my ENT's numbers, but I like his diligence. I like ratface's numbers better. :)

    I get a scope EVERY 30 days from my ENT and a finger exam. I too say, do what you need to do and don't worry about my comfort.

    I can't agree more with ratfce's commet where he says, "If our doctors allow one cancer cell to escape then they have left one seed to germinate. Therefore we must be aggressive in advocating for our own treatment options".

    For my wife and five children and myself, I am following an aggressive monitoring policy. My wife and I even decided if we need to pay out of pocket for 1 extra PET a year, we will do so.

    As for lifestyle habits, you bet I am watching that as well (but I realize some on here got cancer and lived superb lifestyles in the way of healthy eating and exercise). And truth be told I need to get on the exercise wagon a bit better.

    I would be remiss if I did not say faith helps as well. I too have freak out moments bc I am human, but there is always someoe on here who offers me encouragement, prayers and just good 'ol common sense which comes always in the nick of time.

    I appreaciate all of you on this forum and all you contribute.

    Best,

    Tim

    NOTE: I know this thread has some very old posts..but good stuff!!! I love stats!! :)
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    peace
    Fellow passengers,

    This thread is 2 ½ years old, how is GRAVEY doing? I am assuming treatments have concluded and all is well. Any advice I can give is moot and the statistics depress me when they are not in my favor.

    As for Jeff2159, my goodness you have been through the wringer. I hope and pray the best for you.

    Matt