Discussions By Condition: Digestive conditions

appenicitis, carcinoid tumor, constipation, chest pain, help!

Posted In: Digestive conditions 2 Replies
  • Posted By: alwayssick<3
  • April 3, 2013
  • 11:29 AM

i had my appendix removed in november of last year. They found a 4mm carcinoid tumor on the very tip of my appendix an there was no follow up from this as they said as it was so small and the appendix was removed there was no worry. Since my operation i have had problems with my bowels with constipation and at times sever pain because of this. i went to my gp and was given a box of laxitives. They said all it was was consitpation probably caused by medication etc from the op. Whilst i didnt take them everyday i thought it had gone away but it just comes and goes still, although definately not as painful as it was to begin with. Recently i have been back to the doctors not only because i keep getting these symptoms. for what i think has been the last couple of years, i have had sharp pains in my chest and aching. i was told that the cartilidge around my chest got inflamed for no reason and was catching on bones and that this was the reason. I also have for as long as i remember suffered from random pains in joints muscles, head...anywhere really. I thought it was normal. So in this recent doctors appointment i told my gp all of this and he has sent me for a blood test as he thinks the chest pain and random pains may be caused by rheumatoid athritis. my mother her brother and sister all have it so he is thinking this could definately be the cause. i also had a dead arm aching pain in my right arm last night which didnt settle with an anti inflammotory. the reason i am concerned and posting this is because i know some of these symptoms could be carcinoid syndrome and i dont want to be mis diagnosed just because the doctor thinks its the last thing they should check. plus how likely is it that there could be more tumors in other areas? please i would love to hear your thoughts i am very concerned and i just dont know how long i can deal with this constant worry.

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  • i had my appendix removed in november of last year. They found a 4mm carcinoid tumor on the very tip of my appendix an there was no follow up from this as they said as it was so small and the appendix was removed there was no worry. Since my operation i have had problems with my bowels with constipation and at times sever pain because of this. i went to my gp and was given a box of laxitives. They said all it was was consitpation probably caused by medication etc from the op. Whilst i didnt take them everyday i thought it had gone away but it just comes and goes still, although definately not as painful as it was to begin with. Recently i have been back to the doctors not only because i keep getting these symptoms. for what i think has been the last couple of years, i have had sharp pains in my chest and aching. i was told that the cartilidge around my chest got inflamed for no reason and was catching on bones and that this was the reason. I also have for as long as i remember suffered from random pains in joints muscles, head...anywhere really. I thought it was normal. So in this recent doctors appointment i told my gp all of this and he has sent me for a blood test as he thinks the chest pain and random pains may be caused by rheumatoid athritis. my mother her brother and sister all have it so he is thinking this could definately be the cause. i also had a dead arm aching pain in my right arm last night which didnt settle with an anti inflammotory. the reason i am concerned and posting this is because i know some of these symptoms could be carcinoid syndrome and i dont want to be mis diagnosed just because the doctor thinks its the last thing they should check. plus how likely is it that there could be more tumors in other areas? please i would love to hear your thoughts i am very concerned and i just dont know how long i can deal with this constant worry.OMG, you are such the classic case. I'm sorry to inform you but as you already stated you have carcinoid cancer. The removal of your appendix is often when its discovered. BUT unfortunately as is typical you were not directed to a specialist, not surprising since theres only ummm like 6-10 in the whole USA. It sounds like you are experiencing the continuing symptoms of carcinoid syndrome and perhaps bone metastasis? Like I said, sounds like you still have it. Your story is very, very common. This is a textbook case of the kind of mistake that doctors often make in dealing with carcinoid or neuroendocrine cancer. I HOPE I'M WRONG. but you better get some understanding of your situation and get it from people that know this complicated disease which also killed Steve Jobs btw. A good place to start is http://www.carcinoid.org there you can review all you need to start. I don't know where you are I suggest you contact me and I will point you in the right direction to a specialist in your part of the country feel free to contact me offline at capodad@gmail.com. I'm not a doctor but I am very active in the community and can certainly point you to a competent Dr. My wife is the patient BTW. I'm the advocate, caregiver, researcher, crusader and I hope her knight in shining armor. I hope you have one of these, its easier with support. Don't think too long on this, there are many treatment options available and many live many years and decades, at least the ones that get to one or more of the top guys. good luck to you and any others this might help. God bless, Gary
    capodad 3 Replies Flag this Response
  • Thank you for your reply gary however i have to admit you have me very very very worried but i have sent you an email
    alwayssick<3 1 Replies Flag this Response
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