Neuroendoctrine tumour

jackflash22
jackflash22 Member Posts: 524 Member
in Head and Neck Cancer #1

I seem to have hit the jackpot in cancers. My third cancer is very rare and hard to detect called neuroendoctrine tumour. I was diagnosed this month. My three cancers were unrelated. If I can get a hat trick in cancers why can't I win the lottery I would think the odds are the same. The tumour/tumours are in my small bowel one removed and three in situ but small. It's slow growing, so I have to wait three months before having a 24 hr scan. I'm in hospital one day to get dye put in me then wait 4 hours then scanned and a repeat the next day. Blood work and urine tests. I know this isn't linked to my BOT cancer but you have been following my journey. I'm quite calm about it, nothing I can do to change it so I accept it as part of my life. Since the removal of the largest tumour I haven't been in pain and haven't vomited. It affects the hormonal balance in your body but I haven't noticed anything different about me yet. I won't know what treatment I will be getting until all the test results are in. It's a cancer that can spread to the lungs, liver and pancreas I'm hoping mines been caught early. Fingers crossed.

Comments

  • lornal
    lornal Member Posts: 428
    #2
    So sorry

    So sorry to hear this.  Were the problems you were having with your stomach/bowels related to these tumors?   Have you still been able to eat?

    Glad they found it - and hopefully early.

    Lorna

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
    lornal said:

    So sorry

    So sorry to hear this.  Were the problems you were having with your stomach/bowels related to these tumors?   Have you still been able to eat?

    Glad they found it - and hopefully early.

    Lorna

    linked

    yes, all the problems I've been having since last November was because of the tumour. Dietians, my family and myself put it down to the formulas but it was because the tumour was gradually blocking my bowel. I couldn't take my formulas without severe pain and vomiting, nothing was going into my system, I lost weight until I was 7st.12 which is three stone underweight. I was admitted to hospital starving and dehydrated and a mineral loss. I then got pneumonia. From three weeks ago I'm a different person, I have no pain and no vomiting. I'm on a high calorie formula and a machine pumping in food all night, I have gained half a stone and feel great. The tumour I have rarely shows up on scans and biopsies, they found mine by chance, because I was so ill and they thought I had a twisted bowel or blockage so operated. I was lucky. You can go for years with the wrong diognosis  usually they say  it's IBS or the menopause as the tumour affects the hormonal system and you sweat at night and the face and chest flush hot and red. Other symptoms is tiredness, diarrhoea and pain And vomiting. A urine test can show SYMPTONS if they test for it.

  • wmc
    wmc Member Posts: 1,804
    #4
    jackflash22 said:

    linked

    yes, all the problems I've been having since last November was because of the tumour. Dietians, my family and myself put it down to the formulas but it was because the tumour was gradually blocking my bowel. I couldn't take my formulas without severe pain and vomiting, nothing was going into my system, I lost weight until I was 7st.12 which is three stone underweight. I was admitted to hospital starving and dehydrated and a mineral loss. I then got pneumonia. From three weeks ago I'm a different person, I have no pain and no vomiting. I'm on a high calorie formula and a machine pumping in food all night, I have gained half a stone and feel great. The tumour I have rarely shows up on scans and biopsies, they found mine by chance, because I was so ill and they thought I had a twisted bowel or blockage so operated. I was lucky. You can go for years with the wrong diognosis  usually they say  it's IBS or the menopause as the tumour affects the hormonal system and you sweat at night and the face and chest flush hot and red. Other symptoms is tiredness, diarrhoea and pain And vomiting. A urine test can show SYMPTONS if they test for it.

    Wow...I'm so sorry to hear this.

    Jackie I'm sorry to hear this and gled at the same time you stayed on top of it and they did find it. You lost quite a bit of weight and three stones is some weight. Very glad tou keep on this and they did find it what seems early. Good news the pain and the vomiting has stopped which will stop the dehydration as well. I know you have been in pain and had many problems for all these months, but it's comming to an end. There is finily, light at the end of that dark tunnel. I have always keept you in my thoughts and prayers and will continue to do so. You are a very strong person and are very aware of what your body is, or is not doing. That is why they were able to find it. May you stay healthy and always have a better tomorrow.

    Bill

     

  • MrsBD
    MrsBD Member Posts: 617 Member
    #5
    Lottery

    One can go crazy trying to figure out how you got one cancer, much less three. It's good that there's an answer as to why you were having so many issues. I hope your treatment will be easy and successful so you will be able to enjoy many more years with those adorable grandkids.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #6
    wmc said:

    Wow...I'm so sorry to hear this.

    Jackie I'm sorry to hear this and gled at the same time you stayed on top of it and they did find it. You lost quite a bit of weight and three stones is some weight. Very glad tou keep on this and they did find it what seems early. Good news the pain and the vomiting has stopped which will stop the dehydration as well. I know you have been in pain and had many problems for all these months, but it's comming to an end. There is finily, light at the end of that dark tunnel. I have always keept you in my thoughts and prayers and will continue to do so. You are a very strong person and are very aware of what your body is, or is not doing. That is why they were able to find it. May you stay healthy and always have a better tomorrow.

    Bill

     

    Thanx

    thanx bill, at last I know what's been wrong with me all these months, I can't blame the hospital for not finding the tumour, it's rare And hard to detect that's three different types of cancer I've had now...a hat trick..

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #7
    playing the odds

    Forget the lottery!  Go to Vegas!

    I'm sorry you are goingthrough this.  Lifting prayers for grace.

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #8
    What a journey

    You have gone through so much in such a short period of time.  So glad that the doctors kept looking for what the issue was.  Sorry for the weight loss, glad that you are keeping nutrition in now.  Prayers coming your way.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi Jackie

    I was sad when I read about your cancer coming back again, but remember there is always hope. Like with me when my NPC came back a 3rd time for some reason it just stopped growing on its own and did a 180 and has not been back, that was in 2006. So I always say never give up or give in. I know you are a strong person and like me you have a strong will to survive so I will continue to keep you on my pray list.

     

    Tim

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #10
    Jackflash

    What are the odds? I certainly hope and pray you get a break soon. When i was going through treatment I felt like I was constantly getting a prescription filled. One day I told the Pharmacist that I spent so much time and money there, they should name an isle after me. If you keep this up, the hospital should name a floor after you.

    Please stay positive while we all hope and pray you kick some butt and move on.

    Fingers crossed

          Jeff

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    Wow....you have been

    pulled through one knot hole after another.  The good news is, they finally know what has caused all the digestive problems, and are on the case, now....the largest tumor is gone, and you are feeling much better.  Sending prayers that the smaller tumors get removed and you hear nothing more from them.

    You're a tough cookie, Jackie....I say that with admiration!

    p

  • denistd
    denistd Member Posts: 597
    #12
    phrannie51 said:

    Wow....you have been

    pulled through one knot hole after another.  The good news is, they finally know what has caused all the digestive problems, and are on the case, now....the largest tumor is gone, and you are feeling much better.  Sending prayers that the smaller tumors get removed and you hear nothing more from them.

    You're a tough cookie, Jackie....I say that with admiration!

    p

    Hat Trick

    Hi Jackie, I am a Brit living in the US. I think you are trying to catch up with me on the multiple cancers. I was diagnosed in 2009 with laryngeal cancer and went through 3 cisplatin chemo's and 35 rads. In 2012 they found a small nodule in my lung that turned out to be cancer, not related to my throat, 2013 diagnosed with prostate cancer as well as 2 squamous cell skin cancers. 2014 stage 0 melanoma on my arm, had that removed, in  February had another small squamous skin cancer removed. In July of 2014 ENT said my throat cancer was considered cured. They check my lung every year and the prostate has not progressed, that too is the lowest stage you can get. So hang in there me old china good things will happen. Denis

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #13
    denistd said:

    Hat Trick

    Hi Jackie, I am a Brit living in the US. I think you are trying to catch up with me on the multiple cancers. I was diagnosed in 2009 with laryngeal cancer and went through 3 cisplatin chemo's and 35 rads. In 2012 they found a small nodule in my lung that turned out to be cancer, not related to my throat, 2013 diagnosed with prostate cancer as well as 2 squamous cell skin cancers. 2014 stage 0 melanoma on my arm, had that removed, in  February had another small squamous skin cancer removed. In July of 2014 ENT said my throat cancer was considered cured. They check my lung every year and the prostate has not progressed, that too is the lowest stage you can get. So hang in there me old china good things will happen. Denis

    thanks for that

    thanks for that denistd".........

  • avisemi
    avisemi Member Posts: 172
    #14
    So sorry to hear this. You

    So sorry to hear this. You know, judging by your post, you seem to be in good spirits. I'm so glad if this is the case.  I'll keep you in my prayers. 

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #15
    avisemi said:

    So sorry to hear this. You

    So sorry to hear this. You know, judging by your post, you seem to be in good spirits. I'm so glad if this is the case.  I'll keep you in my prayers. 

    I'm in good spirits as you

    I'm in good spirits as you say. After six months of misery with pain and vomiting blamed on my formulas I'm feeling on top of the world and gaining weight. The first day after the removal of the tumour I had no pain no sickness and was able to feed. From only managing to get one formula down a day followed by the pain and vomiting I now have three ensure 2 cal and 900ml of vial 1.5 overnight. About 2400 calories in 24 hrs. I've gained half a stone. I wish they had found the tumour six months ago. I will now be monitored 6 monthly. They say the tumours I have are very small and slow growing and while I'm doing so well they don't want to give me drugs that will give me side effects similar to my illness before. If they start to bother me then they will do something. Some people have these tumours all their lives only to be found at autopsies

  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    jackflash22 said:

    I'm in good spirits as you

    I'm in good spirits as you say. After six months of misery with pain and vomiting blamed on my formulas I'm feeling on top of the world and gaining weight. The first day after the removal of the tumour I had no pain no sickness and was able to feed. From only managing to get one formula down a day followed by the pain and vomiting I now have three ensure 2 cal and 900ml of vial 1.5 overnight. About 2400 calories in 24 hrs. I've gained half a stone. I wish they had found the tumour six months ago. I will now be monitored 6 monthly. They say the tumours I have are very small and slow growing and while I'm doing so well they don't want to give me drugs that will give me side effects similar to my illness before. If they start to bother me then they will do something. Some people have these tumours all their lives only to be found at autopsies

    Hi Jackie

    Glad to hear you got them removed with no problems, it is always best to get them treated or removed as soon as you know they are there. Hopefully now you can heal from the surgery and start putting some weight back on.

     

     

    Tim  

  • jim and i
    jim and i Member Posts: 1,788 Member
    #17
    Praying that things start to

    Praying that things start to improve with no more set backs.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #18
    jf, I'm doing a happy dance

    jf, I'm doing a happy dance for you in honor of the docs making you feel better and making you able to eat but my heart is broken that you now have another cancer.  you've been through so very, very much already.  you have already shown what a strong woman you  are and that you are a butt kicker and i'm sure this will be no different.  especially since you can now eat and gain some strength. i'm so sorry Jf and i'm praying for you to get strong and feel well.  i'm glad it is a very slow growing and I pray the tx will not do any additional damage.

    God bless you jf,

    dj 

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #19
    debbiejeanne said:

    jf, I'm doing a happy dance

    jf, I'm doing a happy dance for you in honor of the docs making you feel better and making you able to eat but my heart is broken that you now have another cancer.  you've been through so very, very much already.  you have already shown what a strong woman you  are and that you are a butt kicker and i'm sure this will be no different.  especially since you can now eat and gain some strength. i'm so sorry Jf and i'm praying for you to get strong and feel well.  i'm glad it is a very slow growing and I pray the tx will not do any additional damage.

    God bless you jf,

    dj 

    thank you Debbiejean and all

    thank you Debbiejean and all the other well wishers. I'm beginning to want to do things again. Since I lost my Peter last month I've been in limbo. I now feel I want to learn something different, I've always had a need to learn new things and have done college adult courses. Now I'm raring to go again. While your mind is fully occupied you don't think of the 'nasties' in life. I'd like to do a full course of art and design...........

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #20
    jackflash22 said:

    thank you Debbiejean and all

    thank you Debbiejean and all the other well wishers. I'm beginning to want to do things again. Since I lost my Peter last month I've been in limbo. I now feel I want to learn something different, I've always had a need to learn new things and have done college adult courses. Now I'm raring to go again. While your mind is fully occupied you don't think of the 'nasties' in life. I'd like to do a full course of art and design...........

    jf, you are such an

    jf, you are such an inspiriation!  no matter what life throws at you, you refuse to let it take your spirit!  let us know when you start the art and design course and i for one look forward to seeing some of your work.  i pray you alwasy show life that it is YOU who is in charge of YOUR life!  live on my brave friend!

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #21
    debbiejeanne said:

    jf, you are such an

    jf, you are such an inspiriation!  no matter what life throws at you, you refuse to let it take your spirit!  let us know when you start the art and design course and i for one look forward to seeing some of your work.  i pray you alwasy show life that it is YOU who is in charge of YOUR life!  live on my brave friend!

    God bless you,

    dj

    Jackie

    Thankful for a dx and that your vomiting has stopped. Prayers continue.

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