realization

mokus
mokus Member Posts: 63 Member
in Head and Neck Cancer #1

I have come to learn, here as my treatment nears its end, that my "success" has probably been an exercise in futility.  Just now researching my exact type cancer ( stage IV squamous cell supraglittic cancer) that I have a "rare" form of cancer that is rarely survived, and most likely, when my radiation and chemo is finished, a sugery is probable that even then, with this cancer, only has about a 20% survival rate.   Like most here then, I must begin the contemplation of the end of life's journey.  My doctors have not been inclined to offer encouragement other than to make sure I understand that I have an extremely difficult journey, but I have noticed that the people caring for my treatment have been kinder and more gentle with me than any medical care provider in my entire life.

 

I do not have only cancer but also deal with lifetime issues of mental illness, Aspergers, bipolar, depression, severe social anxiety that is almost paralyzing, and even more severe issues with OCD which means that all of what is happening is just a continuous loop of hell spinning through my brain without cessation. Outrageous insomnia pimps all the above into the indescribable.

 

I am sorry for laying all of this out in this forum, but quite honestly there is no one in my life that I can confide in and vent to.  My family is just not, and never has been, so tight knit as to allow the development of such relationships.  I have had multiple suicide attempts in the past 6 years and am now fighting to get through whet remains for me with some higher degree of dignity than that.

Comments

  • MrsBD
    MrsBD Member Posts: 617 Member
    #2

    When I first learned of my diagnosis of Stage 4 base of tongue, HPV negative SCC, I started researching everything. The news was grim. A 38% survival rate, debilitating chemo and radiation treatments, and even possible loss of the tongue, voice, abilty to eat, and on and on. My oncologists told me that treatments have improved greatly in the last few years, and my chances were greater than 90%. As I did more checking around on reliable, current web sites, I could see they were right. It's been almost a year since treatment ended, I am doing really well, and I have hope for the future. 

    Most everyone with cancer goes through dark times when we think of the worst. In addition to having just been through a major physical illness, you have the additional burden of mental illness. Your mind will drag you into the valley more quickly and make climbing out more difficult. This is not a time for you to go it alone, and you don't have to. You have probably had your fill of doctors and therapists, but now is the time to tell them how you are feeling. Our metabolism can change after cancer therapy and you might benefit from a review of any medications you take. I'll be here for you too, as will others in this group. 

    I'll be praying for you too. I truly believe God can bring us blessings even through our darkest times. May you sleep well as you feel his loving arms around you tonight.

  • mokus
    mokus Member Posts: 63 Member
    #3
    MrsBD said:

    When I first learned of my diagnosis of Stage 4 base of tongue, HPV negative SCC, I started researching everything. The news was grim. A 38% survival rate, debilitating chemo and radiation treatments, and even possible loss of the tongue, voice, abilty to eat, and on and on. My oncologists told me that treatments have improved greatly in the last few years, and my chances were greater than 90%. As I did more checking around on reliable, current web sites, I could see they were right. It's been almost a year since treatment ended, I am doing really well, and I have hope for the future. 

    Most everyone with cancer goes through dark times when we think of the worst. In addition to having just been through a major physical illness, you have the additional burden of mental illness. Your mind will drag you into the valley more quickly and make climbing out more difficult. This is not a time for you to go it alone, and you don't have to. You have probably had your fill of doctors and therapists, but now is the time to tell them how you are feeling. Our metabolism can change after cancer therapy and you might benefit from a review of any medications you take. I'll be here for you too, as will others in this group. 

    I'll be praying for you too. I truly believe God can bring us blessings even through our darkest times. May you sleep well as you feel his loving arms around you tonight.

    thank you.  you really touched my heart

  • Barbaraek
    Barbaraek Member Posts: 626
    #4
    You are 1 of 1

    we looked at statistics too and then reminded ourselves that we are 1 case out of 1, unique, worthy, and hopeful. You too are unique and worthy. MrsBD said it perfectly- please read her post carefully because she has written some wise words. Mental illness adds an extra weight to your physical cancer issues, I would encourage you to seek out resources to help share that load. We here on the message board care about each and every member of our "wish you didn't have to be here" club. Many, including me, will hold you in their thoughts and prayers and wish you both strength and peace and hope.

    Barbara

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    mokus, i'm so sorry you have

    mokus, i'm so sorry you have to deal with so much.  i am also bipolar so i understand that.  as for the statistics, they are only numbers and most of them are outdated.  plus, nobody knows God's plan except God!  you never have to be sorry for telling us how you feel, that is why we're here.  we are your family and we know what you're going through and we are here to encourage you and let you know we care.  i pray for you to feel better and to see hope.  life is so hard and your additional problems make it even harder but you can get through this, please, just don't give up.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #6
    Mokus....I think you are wrong

    I "HAD" SCC stage 3 supraglottic and just before surgery it was T4; N2; M0; and I have severe bollius emphysema stage 3 and they said I would not survive the surgery or radiation because of my lungs. The only way they would even touch me was if I had my larynx removed, which I said yes. My tumor was 3cm x2.5 cmx2.5cm. They also took 86 lymph glands as a precaution.  I was coughing up onces of blood before surgery. Now because it was contained and had not spread, my odds were 76% which are really good. I don't understand where you get it being a rare form. SCC [squamous cell carcinoma] is really very common. The supergolttic is just the location just above the vocal cords. I do not know where you are getting 20%, even if it has spread to other parts of the body it is much higher than that. If it is regional it gos up and doubles that to 43 if it spread to other local parts of the body and lymph nodes. Just general which is just for all larnyx is 61% and if it is contained 76%. I have the same and even have a photo of my tumor. The only reason they took my larnyx is they could not keep me breathing for that long of a surgery because of my lungs. The anesthesiologist refused to put me under. I was never given any odds by any of my doctors. We just knew if it was removed I would be fine. Oh, I do have a 25% chance of it returning, but thats 75% it won't. I never needed chemo or radiation and even though it is all been removed they won't say cured until five years, but I have been NED going on two years, and do not expect it to ever come back, and I breath better than ever. They were concidering removing 30% of each lung before I had my surgery. I talked with my lung doctor as I was going to have it done while I have good insurance. He just looked at me and said my lungs sound better than he has ever seen them and there is not any surgeon who would concider doing the surgery now. You talk about good news. Even if mine had gone to my lymph glands I was going to be fine. Has yours spread, as you didn't say it had, and if it is to some of the lymph glands it is still survivable. 

    The rough road they talk about is what you went through. Head and neck cancer treatment is the second hardest to go through, but you did. Please don't give up on yourself. You do need to know and belive you can beat this. I did. I have no vocal cords, but I can talk with my vioce. I can whistle and was told it can't be done, but I can. Even with stage 3 COPD [both brincitus and emphysema] I can blow up a balloon. I thought she was going to fall over when I told her I can. She got her camera to film it.

    https://www.youtube.com/watch?v=sL-ZuyhSMEM   Take a look, i'm not joking. You can beat this. Just don't give up, never give up. Click on my name and go to expressiions and my journy is there. There is some photos [Not PG] of my neck after surgery and cut from ear to ear and the hole in my neck I breath through, but there not that bad, I was still swollen. 

    Bill

  • robswife87
    robswife87 Member Posts: 209
    #7
    Most statistics are old

    Over 95% of the statisitics you are seeing are old. Head and neck cancer is NO LONGER rare, increasing everyday. The treatments over the last 5-6 years is tremendous. Your odds are good.

    Do not let your mental illness let you dwell on old science. Make it consentrate on a great future, becuase you do have a future.

    Quit looking at the internet, except this group of people who have been or are still going through what you are. You will find a ton of survivors living the good life and the new normal. This group has the best of help you can get. Look at the Syuperthread for ideas that work and things to help make your go of it easier.

    I looked at stats for my husband 2 and a half years ago and was crushed. When we met his doctors they told us not to look up anything because it was old and outdated information. They gave him a 90% chance of living and now over 2 years clean we don't look back. We were told that the odds of his cancer coming back int the same area is now about 5% after the 2 year mark.

    I am not saying he won't get cancer again but it would not be a reoccurance of this cancer.

    Sandy

  • mokus
    mokus Member Posts: 63 Member
    #8
    wmc said:

    Mokus....I think you are wrong

    I "HAD" SCC stage 3 supraglottic and just before surgery it was T4; N2; M0; and I have severe bollius emphysema stage 3 and they said I would not survive the surgery or radiation because of my lungs. The only way they would even touch me was if I had my larynx removed, which I said yes. My tumor was 3cm x2.5 cmx2.5cm. They also took 86 lymph glands as a precaution.  I was coughing up onces of blood before surgery. Now because it was contained and had not spread, my odds were 76% which are really good. I don't understand where you get it being a rare form. SCC [squamous cell carcinoma] is really very common. The supergolttic is just the location just above the vocal cords. I do not know where you are getting 20%, even if it has spread to other parts of the body it is much higher than that. If it is regional it gos up and doubles that to 43 if it spread to other local parts of the body and lymph nodes. Just general which is just for all larnyx is 61% and if it is contained 76%. I have the same and even have a photo of my tumor. The only reason they took my larnyx is they could not keep me breathing for that long of a surgery because of my lungs. The anesthesiologist refused to put me under. I was never given any odds by any of my doctors. We just knew if it was removed I would be fine. Oh, I do have a 25% chance of it returning, but thats 75% it won't. I never needed chemo or radiation and even though it is all been removed they won't say cured until five years, but I have been NED going on two years, and do not expect it to ever come back, and I breath better than ever. They were concidering removing 30% of each lung before I had my surgery. I talked with my lung doctor as I was going to have it done while I have good insurance. He just looked at me and said my lungs sound better than he has ever seen them and there is not any surgeon who would concider doing the surgery now. You talk about good news. Even if mine had gone to my lymph glands I was going to be fine. Has yours spread, as you didn't say it had, and if it is to some of the lymph glands it is still survivable. 

    The rough road they talk about is what you went through. Head and neck cancer treatment is the second hardest to go through, but you did. Please don't give up on yourself. You do need to know and belive you can beat this. I did. I have no vocal cords, but I can talk with my vioce. I can whistle and was told it can't be done, but I can. Even with stage 3 COPD [both brincitus and emphysema] I can blow up a balloon. I thought she was going to fall over when I told her I can. She got her camera to film it.

    https://www.youtube.com/watch?v=sL-ZuyhSMEM   Take a look, i'm not joking. You can beat this. Just don't give up, never give up. Click on my name and go to expressiions and my journy is there. There is some photos [Not PG] of my neck after surgery and cut from ear to ear and the hole in my neck I breath through, but there not that bad, I was still swollen. 

    Bill

    Thank you so much Bill.  I guess you are right.  I still have a lot to go through.  My numbers are the result of uneducated, inexperienced web searches.  The doctor has said nothing about sugery since I was first diagnosed, but honestly it is the thought of breathing through a tube the rest of my life that scares me to death.  The thought of accidentally doing something (whatever those posibilities are) that would drow or choke me to death are scaring me to death.  It is possible, I suppose, that after chemo and radiation I will have no more problems and will not require a laryngectomy I guess as long as I am NED and have no issues with breathing or speaking.  I have to admit that I am so uneducated about this that I do not even know what the " T4, N2, M0 you refer to means.  This far along in treatment I am just now beginning to have some pain in my throat that I never had prior to diagnosis.  I was actually asymptomatic other than a hoarseness to my voice that had only within the previous 4 months had begun to develop.  I had lost 70 pounds but I thought it was due to me going to gym and working out 7 days a week.

     

    There is a lot of nasty crap coming out of my throat now, especially at night that gets nearly as thick as vasolene after it has been sitting in my spit bucket all night.  Nasty smelling too, which I just assumed was poison from the chemo and cancer treatment. My throat is very itchy and scratchy when I inhale deeply or yawn, which I felt none of prediagnosis

     

    Physically I admit to feeling better and stronger and waiting to be cleared to go out running and do some form of exercise.  The taste has returned to most foods, but there is still something I cannot put my thumb on that makes things "yucky", perhaps the absence of the taste or perception of salt and sweetness.  The "umami" is still missing to foods but I am able to taste almost everything I put in my mouth and swallow nearly everything too.  Just cannot get past the "yuckiness" aspect of it to eat enough by mouth to keep weight at the level they are looking for, but I have no problem at all sucking Jevity through my tube 3 times a day until that is resolved.   Also it is difficult to take medications by mouth now because every pill I swallow gags me and makes me fight from vomiting the contents of my stomach.

     

    Once again though, you and others here have inspired me to stay optimistic and not give up the fight.  I will clear my mind now, finish these last 7 days of treatment and wait to see what the Dr's say

     

    Thank you so much.

  • mokus
    mokus Member Posts: 63 Member
    #9
    robswife87 said:

    Most statistics are old

    Over 95% of the statisitics you are seeing are old. Head and neck cancer is NO LONGER rare, increasing everyday. The treatments over the last 5-6 years is tremendous. Your odds are good.

    Do not let your mental illness let you dwell on old science. Make it consentrate on a great future, becuase you do have a future.

    Quit looking at the internet, except this group of people who have been or are still going through what you are. You will find a ton of survivors living the good life and the new normal. This group has the best of help you can get. Look at the Syuperthread for ideas that work and things to help make your go of it easier.

    I looked at stats for my husband 2 and a half years ago and was crushed. When we met his doctors they told us not to look up anything because it was old and outdated information. They gave him a 90% chance of living and now over 2 years clean we don't look back. We were told that the odds of his cancer coming back int the same area is now about 5% after the 2 year mark.

    I am not saying he won't get cancer again but it would not be a reoccurance of this cancer.

    Sandy

    rrr

    Thank you for wordss of encouragement and support

  • rcaulder
    rcaulder Member Posts: 70
    #10
    mokus said:

    rrr

    Thank you for wordss of encouragement and support

    Statistics

    I would agree, just stop reading all the negative stuff. Me personaly, I just gave it to God. Worrying about it became too big for me. I also came to the conclusion, God doesn't pay attention to statistics, neither should I. All things are possible with God. God has power over all flesh. Cancer is flesh. Look to Him, He'll pull a rabbit out of the hat for you.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Positively..., positive.

    I can only offer you the power of positive thought... 

    Take that with you, surround yourself with positive people, and above all, retain a sense of humor...

    You'll be surprised how far that will take you on this journey..

    Positive thoughts and prayer...

    Oh, BTW.., you have a family here that will listen to all of your rants and venting...

    Hell, we might even have to smack the back of your head occasionally to get and keep you straightened out and thinking forward...

    John

  • mokus
    mokus Member Posts: 63 Member
    #12
    Skiffin16 said:

    Positively..., positive.

    I can only offer you the power of positive thought... 

    Take that with you, surround yourself with positive people, and above all, retain a sense of humor...

    You'll be surprised how far that will take you on this journey..

    Positive thoughts and prayer...

    Oh, BTW.., you have a family here that will listen to all of your rants and venting...

    Hell, we might even have to smack the back of your head occasionally to get and keep you straightened out and thinking forward...

    John

    hhh

    Thanks john.  i am trying to keep things in perspective

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