HPV + WITH AGGRESSIVE TUMORS

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luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
edited March 2014 in Head and Neck Cancer #1
Hello all and hope your evening is going well. I am one week post treatment and have way too much time to think about the future. I was wanting to know what your medical team may have said regarding the "aggressive nature" of your cancer.

Pre surgery I was diagnosed T2N2M0 with my Right Tonsil being the primary. Once my 2 surgeries were finished, and the final Path came back, I was re staged T3N3M0 but the stage 4 part was also changed from the "best possible" to the Middle stage of Stage 4. My Surgeon and Radiation Doc seem to think I will have a reoccurrance, most likely some where above the collar bone. They both say there is very little solid research with this new stage. The Surgeon also feels he got clean margins everywhere he removed tissue. Because of this I had both sides of my neck radiated and was able to get through the 3 rounds of Cisplatin. They say they treated this as aggressively as possible, thus also causing my horrible side effects.

What have your Doc's said to you regarding a reoccurrance??

I am only one week out and already thinking about something in the future I have no control over. I know this is not healthy. Any advice??

Thanks much!!

BEST

Mike
«1

Comments

  • DJG1
    DJG1 Member Posts: 121
    Options
    Mike,
    I am glad to see you have completed the treatment. I watched you post as you traveled this journey, and knew you had many bumps in the road. I do wish you a speedy recovery and hope that the many side effects are temporary. I also was diagnosed with right tonsil primary,stage 3,with tonsils removed and partial neck dicission. (I am HPV neg) Had 4 nodes removed, with 2 being positive, the other two not. Doctors said all came out with clean margins, as much as possible. I did speak with the RO prior to treatment about the re-occurance. Statictally the re-occurance is around 50%, and a little better with HPV+. He does not agree with these stats, but says his oppinion with my treatment,he gives me a 66% success rate, (meaning no reoccurance). I can only suggest you look at the positives and do not dwell on the possibility of any reoccurance. I have found going through this journey, that every little pain I have (no matter where it is), it enters you mind that is this more cancer somewhere. I am sure most here have those same experiences. But we should all live our lives as each day is our last. It is very hard to do, as we take so many things for granted, but I think the experience we talk about on this board brings us closer to living like that. I do think we have some control over how we feel, with the nutrition and exercise we follow. Good Luck to you Mike, I suggest you hang in there and prove those doctors wrong, as many before you has done. Wishing you the very best.
    Debbie
  • Scambuster
    Scambuster Member Posts: 973
    Options
    Watch for mood swings
    Hi Mike,

    Glad to hear you have finished the brutal treatment. FWIW I was readmitted about 10 days out of treatment in pretty bad shape. I think it all caught up with me, the long 10 weeks of pain from surgery, then rads and chemo, the stress, the overwhelming grief and shock of having Cancer, and not having slept properly for the whole ordeal all rolled up in a big bad ball and it bowled me over - big time.

    Being at home trying to recover but actually getting worse sent me into a pretty bad depression. I was fortunate that they picked it as I had no idea what was wrong (tough guys don't get depression .... ), I just thought I was dying, and in a horrible way. The Docs sent in a psychiatrist and he spent a couple of hours with me and then gave me some meds, which actually replaced all the pain killers I was on (including Morphine). The upside is, that it turned me around and I then started my recovery in earnest. I say started as it did did take a while.

    The message here is if you don't feel right, have fears and anxiety, minor break downs, then talk to your doctor. You already know the 'Tough Guy' thing doesn't work with this beast, so it can be a good idea to talk to a professional as you have been through the mill and are possibly emotionally drained and of course, you would be anxious as we all are/were.

    Anyway you know what I mean Mike. Just my few cents worth, as now you really need to focus on recovering and getting healthy and then staying healthy. Do everything you can to prevent recurrence. Everything. That is your goal.

    Scam
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Options
    Precious Present
    No soft words this morning, it is all about the "Precious Present".

    For years until he died my doctor kept saying "we can not find it just keep having fun." that started 14 plus years ago.

    Yesterday a friend of mine on face book who went thru head and neck cancer almost two years ago and found out she has breast cancer 2 1/2 months ago, had double mastectomy, chemo and then radiation posted this, I love it

    We cannot change yesterday, and we cannot predict tomorrow, but we can live today. So be alive. Never let one day pass by without a smile.

    After going thru hell and on your road to recovery anything that comes in your way will be much easier to deal with.

    Congrats on making it thru your treatments.

    John
  • Glenna M
    Glenna M Member Posts: 1,576
    Options
    I know the feeling...
    I know exactly what you are feeling!!! I was diagnosed with NSCLC adenocarcinoma in May '09 and two weeks later after having a PET scan I was diagnosed with SCC laryngeal cancer T3N0M0. Went through 35 rads and 3 Cisplatin and then 4 Stereotactic Radiosurgery for the lung. Both my rad and medical oncologists have made it pretty clear that it will be back. On my last visit to my medical oncologist he said I wouldn't need to see him again "until" it came back, not "if" it comes back. After my last CT scan in August I asked my rad oncologist if I could feel safe that the lung tumor was gone and his reply was "you can think that, for now". Maybe they feel this way about my cancers as neither were operable.

    I'm not sure why they both feel that it will be back, I think part of me doesn't want to know the answer.

    Like you, I worry about the future but when I start dwelling on it I remind myself that I am still here and still feeling well enough to enjoy each day. I do not take anything for granted and spend as much time with my family and friends as I can. I also remind myself that it may not be the cancer that gets me...no one knows how much time they have left or when they will die. I could be in a fatal car accident or numerous other scenarios so I try to live each day to the fullest and enjoy what I have.

    I don't know if this advice will help you or not but I have found that trying to help others who are going through this helps me to feel stronger. I just wish I was as good at taking my advice as I am giving it :)

    Stay strong Mike and don't let this horrible disease take away your ability to enjoy your life and your family. Feel free to PM me if you need to talk or vent as I will gladly help you through this.

    My best to you and your family,
    Glenna
  • nkimber
    nkimber Member Posts: 46
    Options
    Glenna M said:

    I know the feeling...
    I know exactly what you are feeling!!! I was diagnosed with NSCLC adenocarcinoma in May '09 and two weeks later after having a PET scan I was diagnosed with SCC laryngeal cancer T3N0M0. Went through 35 rads and 3 Cisplatin and then 4 Stereotactic Radiosurgery for the lung. Both my rad and medical oncologists have made it pretty clear that it will be back. On my last visit to my medical oncologist he said I wouldn't need to see him again "until" it came back, not "if" it comes back. After my last CT scan in August I asked my rad oncologist if I could feel safe that the lung tumor was gone and his reply was "you can think that, for now". Maybe they feel this way about my cancers as neither were operable.

    I'm not sure why they both feel that it will be back, I think part of me doesn't want to know the answer.

    Like you, I worry about the future but when I start dwelling on it I remind myself that I am still here and still feeling well enough to enjoy each day. I do not take anything for granted and spend as much time with my family and friends as I can. I also remind myself that it may not be the cancer that gets me...no one knows how much time they have left or when they will die. I could be in a fatal car accident or numerous other scenarios so I try to live each day to the fullest and enjoy what I have.

    I don't know if this advice will help you or not but I have found that trying to help others who are going through this helps me to feel stronger. I just wish I was as good at taking my advice as I am giving it :)

    Stay strong Mike and don't let this horrible disease take away your ability to enjoy your life and your family. Feel free to PM me if you need to talk or vent as I will gladly help you through this.

    My best to you and your family,
    Glenna

    I know you will kick butt!!!
    I am just in the beginning of treatment but also have been told I have an "aggressive" cancer, by an onco with probably the worst bedside manner EVER. I definitely go through periods of fear, anxiety, and depression, and I think it's because of two things. One, what I have is so rare that there isn't a ton of info, and what is there is pretty grim if you ask me! I need to make myself STOP LOOKING at the internet becuase it just freaks me out. Instead, I need to know that everybody is different, and I am going to prove everybody wrong. I think you should feel the same way! You WILL NOT have a recurrance!!

    The other thing that really helps me is to do things that help me feel in control. The best way I can do this is with my diet and exercise. I have found that so many doctors and nurses don't pay any attention to diet and nutrition (or exercise for that matter), but it is SO important!!! I was a college athlete without the best natural athleticism, so I needed to do all I could to get an edge, and nutrition was always my answer. Thank God, because now I am obsessed with reading about different cancer-fighting diets. If you need any advice on what I have found, please let me know and I would love to pass on the info! You should also read the book Anti-Cancer if you haven't already. Very inspiring, empowering, and I think helpful too.

    Hang in there and you will kick butt and prove that doctor wrong!!!!

    Lots of hugs and prayers to you,
    Nicole
  • stevenl
    stevenl Member Posts: 587
    Options
    nkimber said:

    I know you will kick butt!!!
    I am just in the beginning of treatment but also have been told I have an "aggressive" cancer, by an onco with probably the worst bedside manner EVER. I definitely go through periods of fear, anxiety, and depression, and I think it's because of two things. One, what I have is so rare that there isn't a ton of info, and what is there is pretty grim if you ask me! I need to make myself STOP LOOKING at the internet becuase it just freaks me out. Instead, I need to know that everybody is different, and I am going to prove everybody wrong. I think you should feel the same way! You WILL NOT have a recurrance!!

    The other thing that really helps me is to do things that help me feel in control. The best way I can do this is with my diet and exercise. I have found that so many doctors and nurses don't pay any attention to diet and nutrition (or exercise for that matter), but it is SO important!!! I was a college athlete without the best natural athleticism, so I needed to do all I could to get an edge, and nutrition was always my answer. Thank God, because now I am obsessed with reading about different cancer-fighting diets. If you need any advice on what I have found, please let me know and I would love to pass on the info! You should also read the book Anti-Cancer if you haven't already. Very inspiring, empowering, and I think helpful too.

    Hang in there and you will kick butt and prove that doctor wrong!!!!

    Lots of hugs and prayers to you,
    Nicole

    My Doc's have never said those words to me. If any of them did, I would probably tell them where to go with their prediction. I go to see Rad Man Nov.4th, and have a scan scheduled for Dec.7th. One year to the day I went to my family doc about the lump on my neck. Then I see ENT Man the 14th. I am sure everything will come back clean. I have kicked the C in the behind and so have you! Like Kent always says, "BELIEVE". Good luck with the next 20 years of life.

    Best,
    Steve
  • JUDYV5
    JUDYV5 Member Posts: 392
    Options
    worry
    I don't think I really tried to start living until I got my first NED. I really didn't have any symptoms until after I was diagnosed. I do wonder everytime I get an ache or pain somewhere. I had agressive treatment 35 rads and the 3 citsplatin because it was the best option to get rid of the c, and it was very difficult. I was told during my last visit that I will have chest x-rays every 6 months - because that is where it was most likely to spread. It was a little upseting. Then I asked myself what I would do if it came back. I would fight and beat it again. Everyday is a blessing. Cherish every moment.
  • areomech
    areomech Member Posts: 33
    Options
    Live your life to the fullest.
    When I had my conversation with my radiologist. I ask the question about reoccurrance of the cancer. His exact words were "you let me worry about the reoccurrance issue. and you live your life like you aways planned." Even though it made me feel good to hear that, the worry is still there. He also told me hpv+ cancer responds really well to radiation and chemo. That is why they go after the cancer really aggressive to prevent reoccurrance. Even though the fear is still there. I am still going to live my life like, I was going to live to be 100yrs old.
  • Pam M
    Pam M Member Posts: 2,196
    Options
    Common Fear
    Mike,
    I think a lot of us worry about "it" coming back. My docs say nothing about reoccurance, and I don't ask them. I will say, though that my RO gave the familiar "In general, if you're Clean for five years, you've made it" at the beginning. At my last visit (a few months after treatment) he said "we're looking for 18 months" again, I didn't ask for an explanation, just assumed he meant that this was the window with the highest reoccurance rate. I go back in two and a half weeks for my second post-treatment CT and PET; maybe I'll ask then - maybe I won't. When I start to worry, I tell myself that if my docs are pleased, why shouldn't I be? I also am making (mostly small) changes to my lifestyle and diet to work on strengthening my immune system.

    I do recall that I was extra anxious after treatment until my first PET. It's very odd, to be going to the cancer center five days a week, getting chemo and radiation and seeing multiple docs on a regular basis, then to suddenly switch to seeing one or two docs a month and having no treatments. I felt that nothing was going on to help me continue the fight against cancer "just in case".

    On the "yeah, that's bad, but" front - I know that you lost a "goodly amount" of weight during treatment - I did, too. I have read that being overweight increases risk of getting cancer - so you're ahead of the game on that front, too now just by being lighter.

    Do well.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Options
    nkimber said:

    I know you will kick butt!!!
    I am just in the beginning of treatment but also have been told I have an "aggressive" cancer, by an onco with probably the worst bedside manner EVER. I definitely go through periods of fear, anxiety, and depression, and I think it's because of two things. One, what I have is so rare that there isn't a ton of info, and what is there is pretty grim if you ask me! I need to make myself STOP LOOKING at the internet becuase it just freaks me out. Instead, I need to know that everybody is different, and I am going to prove everybody wrong. I think you should feel the same way! You WILL NOT have a recurrance!!

    The other thing that really helps me is to do things that help me feel in control. The best way I can do this is with my diet and exercise. I have found that so many doctors and nurses don't pay any attention to diet and nutrition (or exercise for that matter), but it is SO important!!! I was a college athlete without the best natural athleticism, so I needed to do all I could to get an edge, and nutrition was always my answer. Thank God, because now I am obsessed with reading about different cancer-fighting diets. If you need any advice on what I have found, please let me know and I would love to pass on the info! You should also read the book Anti-Cancer if you haven't already. Very inspiring, empowering, and I think helpful too.

    Hang in there and you will kick butt and prove that doctor wrong!!!!

    Lots of hugs and prayers to you,
    Nicole

    Rare Cancer
    Nicole

    Can you share what kind and location of cancer you have?

    Also I love your positive mental attitude.

    John
  • Fire34
    Fire34 Member Posts: 365
    Options
    My Doctors Didn't
    Mike
    My doctors didn't say a thing about reoccurence. My scans keep coming back NED so I dont worry about anyhting but today. My wife is the worry wart LOL every little bump she feels now etc. I dont worry about anything I made it thru treatments just like you. My graduation sweatshirt I was given by the team says "Life is Good" What more can you say to that.
    Just concentrate on recovering and keeping those throat muscles working. Do your swallow exercises. Keep up with the nutrition, it took me awhile but it does get better. Positive mental attitude and what looks like, you have a great support group to help you get through the tough times.
    Wake up with a smile and tell yourself you can do it. Because you can
    Best Wishe & Prayers on you recovery
    Dave
  • luv2cut1
    luv2cut1 Member Posts: 288
    Options
    Fire34 said:

    My Doctors Didn't
    Mike
    My doctors didn't say a thing about reoccurence. My scans keep coming back NED so I dont worry about anyhting but today. My wife is the worry wart LOL every little bump she feels now etc. I dont worry about anything I made it thru treatments just like you. My graduation sweatshirt I was given by the team says "Life is Good" What more can you say to that.
    Just concentrate on recovering and keeping those throat muscles working. Do your swallow exercises. Keep up with the nutrition, it took me awhile but it does get better. Positive mental attitude and what looks like, you have a great support group to help you get through the tough times.
    Wake up with a smile and tell yourself you can do it. Because you can
    Best Wishe & Prayers on you recovery
    Dave

    FIRE
    Fire,

    I need to talk to your wife! My husband is just like you - he doesn't worry about anything. He made it through the treatments and is enjoying every day. I am just like your wife, the worrywart LOL. Every time I think I see a bump or every time he coughs or anything, I worry. I try not to let him know how much I worry because it doesn't seem fair that he is calming me rather than the other way around!

    We have not asked about recurrence and the doctors have not said much. They gave the standard 5 years and you are cured, but then said that most recurrences occur within the first two. We are now 14 months out from treatment and have his next scan on November 10. For me, let the worrying begin! He is not concerned.

    Good luck to all with the worry issue.

    Myka
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    Options

    Watch for mood swings
    Hi Mike,

    Glad to hear you have finished the brutal treatment. FWIW I was readmitted about 10 days out of treatment in pretty bad shape. I think it all caught up with me, the long 10 weeks of pain from surgery, then rads and chemo, the stress, the overwhelming grief and shock of having Cancer, and not having slept properly for the whole ordeal all rolled up in a big bad ball and it bowled me over - big time.

    Being at home trying to recover but actually getting worse sent me into a pretty bad depression. I was fortunate that they picked it as I had no idea what was wrong (tough guys don't get depression .... ), I just thought I was dying, and in a horrible way. The Docs sent in a psychiatrist and he spent a couple of hours with me and then gave me some meds, which actually replaced all the pain killers I was on (including Morphine). The upside is, that it turned me around and I then started my recovery in earnest. I say started as it did did take a while.

    The message here is if you don't feel right, have fears and anxiety, minor break downs, then talk to your doctor. You already know the 'Tough Guy' thing doesn't work with this beast, so it can be a good idea to talk to a professional as you have been through the mill and are possibly emotionally drained and of course, you would be anxious as we all are/were.

    Anyway you know what I mean Mike. Just my few cents worth, as now you really need to focus on recovering and getting healthy and then staying healthy. Do everything you can to prevent recurrence. Everything. That is your goal.

    Scam

    MENTAL ATTITUDE
    Hi Scam
    I am taking Celexa to combat some depression. Maybe I need something else. I have also told my wife to get back to work and get away from me and this cancer during the day. I wonder if the problem with me is I sit here alone M-F all day watching TV and have too much idle time on my hands.
    Today is Saturday and my wife is going to get me out of the house for awhile. I am sure this will help.

    Thanks

    Mike
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    Options
    Glenna M said:

    I know the feeling...
    I know exactly what you are feeling!!! I was diagnosed with NSCLC adenocarcinoma in May '09 and two weeks later after having a PET scan I was diagnosed with SCC laryngeal cancer T3N0M0. Went through 35 rads and 3 Cisplatin and then 4 Stereotactic Radiosurgery for the lung. Both my rad and medical oncologists have made it pretty clear that it will be back. On my last visit to my medical oncologist he said I wouldn't need to see him again "until" it came back, not "if" it comes back. After my last CT scan in August I asked my rad oncologist if I could feel safe that the lung tumor was gone and his reply was "you can think that, for now". Maybe they feel this way about my cancers as neither were operable.

    I'm not sure why they both feel that it will be back, I think part of me doesn't want to know the answer.

    Like you, I worry about the future but when I start dwelling on it I remind myself that I am still here and still feeling well enough to enjoy each day. I do not take anything for granted and spend as much time with my family and friends as I can. I also remind myself that it may not be the cancer that gets me...no one knows how much time they have left or when they will die. I could be in a fatal car accident or numerous other scenarios so I try to live each day to the fullest and enjoy what I have.

    I don't know if this advice will help you or not but I have found that trying to help others who are going through this helps me to feel stronger. I just wish I was as good at taking my advice as I am giving it :)

    Stay strong Mike and don't let this horrible disease take away your ability to enjoy your life and your family. Feel free to PM me if you need to talk or vent as I will gladly help you through this.

    My best to you and your family,
    Glenna

    RIGHT FRAME OF MIND
    Thanks for your reply. I know being in the right frame of mind is everything, as you can think yourself into and out of negativity. Like I told Scam in an earlier reply, I am alone M-F all day with my thoughts and have too much idle time on my hands. I can fend for myself during the day, and told my wife she needs to get back to her job and keep busy. I know when I return to work, even part time I will feel better. Just being busy enough to not have time to think about being sick will help.

    Thanks

    Mike
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    Options
    nkimber said:

    I know you will kick butt!!!
    I am just in the beginning of treatment but also have been told I have an "aggressive" cancer, by an onco with probably the worst bedside manner EVER. I definitely go through periods of fear, anxiety, and depression, and I think it's because of two things. One, what I have is so rare that there isn't a ton of info, and what is there is pretty grim if you ask me! I need to make myself STOP LOOKING at the internet becuase it just freaks me out. Instead, I need to know that everybody is different, and I am going to prove everybody wrong. I think you should feel the same way! You WILL NOT have a recurrance!!

    The other thing that really helps me is to do things that help me feel in control. The best way I can do this is with my diet and exercise. I have found that so many doctors and nurses don't pay any attention to diet and nutrition (or exercise for that matter), but it is SO important!!! I was a college athlete without the best natural athleticism, so I needed to do all I could to get an edge, and nutrition was always my answer. Thank God, because now I am obsessed with reading about different cancer-fighting diets. If you need any advice on what I have found, please let me know and I would love to pass on the info! You should also read the book Anti-Cancer if you haven't already. Very inspiring, empowering, and I think helpful too.

    Hang in there and you will kick butt and prove that doctor wrong!!!!

    Lots of hugs and prayers to you,
    Nicole

    NUTRITION
    Thanks for your reply.
    Can you tell me what type of cancer you were diagnosed with? (PM me if you would prefer)

    I have not done much if any reading about cancer right now. I do know I need to make some lifestyle changes going forward. I look at all of the weight that I have lost as a good thing, because I have not had to take any of my HBP medicines since I lost the weight. I also know I do not need to weight 240 lbs anymore as I no longer compete in Powerlifting. The added weight probabbly was not good for me anyway.

    I never smoked at all but did drink socially on a regular basis. Right now the smell of a drink makes me nautious. I have read allot of posts where people are switching to a total Vegan lifestyle, but for me I do not think I could or would want to, but am open minded to making some changes towards foods that are not or have very little processing.

    If you have anything you would like to forward to me I would appreciate that.

    Thanks

    Mike
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    Options
    JUDYV5 said:

    worry
    I don't think I really tried to start living until I got my first NED. I really didn't have any symptoms until after I was diagnosed. I do wonder everytime I get an ache or pain somewhere. I had agressive treatment 35 rads and the 3 citsplatin because it was the best option to get rid of the c, and it was very difficult. I was told during my last visit that I will have chest x-rays every 6 months - because that is where it was most likely to spread. It was a little upseting. Then I asked myself what I would do if it came back. I would fight and beat it again. Everyday is a blessing. Cherish every moment.

    WORRY
    Thanks for the reply Judy. My Doc's have told me they think if it comes back it will be somewhere above my collar bone. They also told me if it re occurs any lower it would be the Lungs or Liver. I have always read bad things about people that get cancer in any of the vital organs, almost like itis a "death sentence" if it goes there. Again, I have way too much time on my hands during the day to think about crap like this. I too feel like I really will not start to live a normal life until I receive my first NED. My hope currently is "I hope all of theis surgery and treatment works". I have received the best and most aggressive treatment currently available for this, and should believe 100% the cancer is gone, but then think I have not had my first scan yet, so who knows.

    I do hold onto hope that there are people on this board who have had it come back multiple times and each time they have beat it. That keeps me going.

    Thanks Judy

    Mike
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options
    luv2cut1 said:

    FIRE
    Fire,

    I need to talk to your wife! My husband is just like you - he doesn't worry about anything. He made it through the treatments and is enjoying every day. I am just like your wife, the worrywart LOL. Every time I think I see a bump or every time he coughs or anything, I worry. I try not to let him know how much I worry because it doesn't seem fair that he is calming me rather than the other way around!

    We have not asked about recurrence and the doctors have not said much. They gave the standard 5 years and you are cured, but then said that most recurrences occur within the first two. We are now 14 months out from treatment and have his next scan on November 10. For me, let the worrying begin! He is not concerned.

    Good luck to all with the worry issue.

    Myka

    Honestly my doctors didn't
    Honestly my doctors didn't dwell on this much. They just said that for normal HNC patients that recurrence is 40%. With rads 20%. If you add chemo drops by another 10%. Having Fanconi Anemia puts me in a much higher risk pool. I have read 60% return rate. I honestly try not to think about stuff like that. Living with FA and having a brother who was ill since 8 and passed just shy of 21 has taught me that life is too short. A point that had been driven home to me way before my HNC diagnosis. Many FA patients don't live past their 20's. I try and just enjoy each day as it comes and live in the moment. Is it always easy? No way. Do I get scared? Yep. But I try not to dwell on it like I used to. I think about it and move on. One thing my docs did agree on was that thru treatment and recovery attitude is everything. Does that mean I think positive people don't get cancer? No. But I do think it aids in health and recovery.
  • Pam M
    Pam M Member Posts: 2,196
    Options

    Honestly my doctors didn't
    Honestly my doctors didn't dwell on this much. They just said that for normal HNC patients that recurrence is 40%. With rads 20%. If you add chemo drops by another 10%. Having Fanconi Anemia puts me in a much higher risk pool. I have read 60% return rate. I honestly try not to think about stuff like that. Living with FA and having a brother who was ill since 8 and passed just shy of 21 has taught me that life is too short. A point that had been driven home to me way before my HNC diagnosis. Many FA patients don't live past their 20's. I try and just enjoy each day as it comes and live in the moment. Is it always easy? No way. Do I get scared? Yep. But I try not to dwell on it like I used to. I think about it and move on. One thing my docs did agree on was that thru treatment and recovery attitude is everything. Does that mean I think positive people don't get cancer? No. But I do think it aids in health and recovery.

    Positive Attitude
    And laughter. Laughter. I self-prescribed at least one stupid sitcome on TV a day during most of my treatment time and recovery. A Don Knotts or Adam Sandler movie is bonus points. You know it works. Do it.
  • Glenna M
    Glenna M Member Posts: 1,576
    Options
    Pam M said:

    Positive Attitude
    And laughter. Laughter. I self-prescribed at least one stupid sitcome on TV a day during most of my treatment time and recovery. A Don Knotts or Adam Sandler movie is bonus points. You know it works. Do it.

    Laughter...
    If laughter works then I will never get sick again - LOL. I've become a big fan of the half hour sitcoms...they are only a half hour long so I don't get bored half way through them. My favorites are Becker and Two and a Half Men. Daily dose = 2 hours of mindless amusement :)

    A positive attitude is definitely a plus, I know a lot of people think this is "Bull" and there are no studies to prove it but even my rad oncologist told me that he thinks my recovery and treatment went smoothly because I kept such a positive attitude throughout my 4 months of treatment. Post treatment is another thing altogether...I think it's because I'm no longer doing anything (medically) to fight this and it sometimes scares me. When it does I try to put "my big girl panties" on and suck it up :)

    My best to everyone,
    Glenna
  • Greg53
    Greg53 Member Posts: 849
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    Glenna M said:

    Laughter...
    If laughter works then I will never get sick again - LOL. I've become a big fan of the half hour sitcoms...they are only a half hour long so I don't get bored half way through them. My favorites are Becker and Two and a Half Men. Daily dose = 2 hours of mindless amusement :)

    A positive attitude is definitely a plus, I know a lot of people think this is "Bull" and there are no studies to prove it but even my rad oncologist told me that he thinks my recovery and treatment went smoothly because I kept such a positive attitude throughout my 4 months of treatment. Post treatment is another thing altogether...I think it's because I'm no longer doing anything (medically) to fight this and it sometimes scares me. When it does I try to put "my big girl panties" on and suck it up :)

    My best to everyone,
    Glenna

    Hey Mike
    Mike,

    Glad to hear you're through with treatments. You'll probably have a couple more weeks of the rough stuff, but it'll get better from here on out Bud! Just a personal note on reoccurrance. I had 2 close family members that beat c and survived for a lot longer than the docs ever predicted (by 5 and 15 years, respectively). They both had reoccurances which they both lost to eventually. So reoccurrance is definitely in the back of my mind. I try not to dwell on it or think about it much. I'm six months out now and I'm enjoying life more than ever before (and I've always enjoyed my life!).

    I was stage 4 and had extra capsular spread. I had mets to 10 nodes on right side and mets to 1 node on left side. Doc said mine was very, very aggressive also. What I decided was that it may or may not return but I'm gonna have fun in the meantime. Also I'm going to do everything in my power to help my chances. That's a personal choice but I think it will help me. My research has shown going vegetarian and adding the right supplements to my diet will help. I haven't been able to go 100% vegan yet which is due to still having to get in 3500 calories/day to keep my weight up, but that's my goal. Also I'm working out pretty intensive again and adding some meditative exercises along with that. I found giving back has a huge positive mental aspect as well (volunteering at 2 places now). And as Pam and Glenna pointed out, and I couldn't agree more - Positive Mental Attitude and Sense of Humor are huge. My biggest decision remains if I will drink or not. I'm postponing that decision til I'm a year out. Whatever you decide keep your positive attitude (PA), it's one of the best I've seen here and there are lots of PAs here. As always, I'm pulling for you Bro'!

    Positive thoughts!!
    Greg