carcinoid tumour on appendix

angelsnls
angelsnls Member Posts: 67
in Rare and Other Cancers #1

Hi we are in complete shock my 22yr old son had appendicitis in january and surgeon removed his appendix he was called back to see surgeon and was told that they had found a carcinoid tumour on his appendix 22mm (I think)he was told that they had got it all and nothing else needed done. he was having some aches and pains recently and went back to see surgeon who is now going to carry out a ct scan and a colonoscopy. What makes this so shocking is that i myself and my son had appointments to see the surgeon on the same day 20 minutes apart and I was told that I had a tumour on my kidney and have now had it removed and confirmed clear cell renal cell carcinoma now taking pazopanib, which I hope works, thanks for listening to me.

Love to everyone x

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Your son needs a specialist

    Please, please, please arrange for your son to see a specialist in appendiceal cancers.  They are not the same as other cancers, and cannot be treated with standard colo-rectal protocols.  I go to Memorial Sloan Kettering in NYC, and those of us with appendix cancers usually have to travel to one of the specialists.

  • angelsnls
    angelsnls Member Posts: 67
    #3
    abrub said:

    Your son needs a specialist

    Please, please, please arrange for your son to see a specialist in appendiceal cancers.  They are not the same as other cancers, and cannot be treated with standard colo-rectal protocols.  I go to Memorial Sloan Kettering in NYC, and those of us with appendix cancers usually have to travel to one of the specialists.

    Thank you abrub, we are in

    Thank you abrub, we are in the UK (shetland Isles in Scotland) I am seeing my oncologist next week so I am going to talk with him about it and see if there is a specialist in Aberdeen that would see him.

    Thanks again for your reply lots of love x

  • abrub
    abrub Member Posts: 2,174 Member
    #4
    angelsnls said:

    Thank you abrub, we are in

    Thank you abrub, we are in the UK (shetland Isles in Scotland) I am seeing my oncologist next week so I am going to talk with him about it and see if there is a specialist in Aberdeen that would see him.

    Thanks again for your reply lots of love x

    In GB, the appendix specialists are

    In GB, the appendix specialists are at the Christie and at Basingstoke.  I don't believe there is anyone in Scotland.  (By the way, I'm a 7+ year survivior, and only missed one season of curling!)

    Alice

  • angelsnls
    angelsnls Member Posts: 67
    #5
    abrub said:

    In GB, the appendix specialists are

    In GB, the appendix specialists are at the Christie and at Basingstoke.  I don't believe there is anyone in Scotland.  (By the way, I'm a 7+ year survivior, and only missed one season of curling!)

    Alice

    Thanks Alice I will look into

    Thanks Alice I will look into it. I was just told that my lung mets are shrinking but there has been a recurrence in the site where my kidney & tumour was removed from, I am more worried about my son as he has a lot of living to do yet, I have 7 kids 4 all grown up and got there own houses etc and 3 younger still at home (15,14 and 8). So I will fight to be here to see them all grow. I am seeing my oncologist next week so he will be asked questions about my son and where to get specialist care even if it means going to England, take care.

    Lots of love angela

  • northa914
    northa914 Member Posts: 100
    #6
    angelsnls said:

    Thanks Alice I will look into

    Thanks Alice I will look into it. I was just told that my lung mets are shrinking but there has been a recurrence in the site where my kidney & tumour was removed from, I am more worried about my son as he has a lot of living to do yet, I have 7 kids 4 all grown up and got there own houses etc and 3 younger still at home (15,14 and 8). So I will fight to be here to see them all grow. I am seeing my oncologist next week so he will be asked questions about my son and where to get specialist care even if it means going to England, take care.

    Lots of love angela

    Perhaps a visit to a

    Perhaps a visit to a carcinoid tumor specialist would be in order for your son?  I have panceratic neuroendocrine carcinoid tumor (carcinoid that originated from the pancreas). There's different types that originate from different areas in the body.  Your son's doctor needs to discern between well and poorly differentiated, if it is small cell, what growth rate can be anticipated (slow to moderate to aggressive), etc.  I was diagnosed at stage IV in 2010, and after chasing the wrong kind of cancer for 2 1/2 years I'm now on the path to possible remission, or at least the closest we possibly can come to it.  Mine is well-differentiated and moderately growing, and we seem to have found the magic bullet. Hopefully the surgeon got all of the carcnoid in your son's appendix and nothing more needs to be done.  Many people actually pass away with carcinoid as opposed to from it, with the disease only being discovered during an autopsy because the growth never caused an symptoms or problems.  I've learned to always second-guess the opinion of my doctors.  There's a carcinoid specialist in London, his info is below:

    Martyn E. Caplin, MD (Medical Oncology and Internal Medicine)

    Consultant in Gastroenterology & Hepatobiliary Medicine


    Royal Free Hospital,

    Pond Street Centre for Gastroenterology
    London, NW3 2QG


    Tel: +44 (0)207- 830-2867

    Tel: 44 (0)207-472-6728


     

    There is another doctor, not considered a specialist but who supposedly has knowledge of this rare type pf cancer.  His or her info is as follows:

     


    Karim Meeran MD (Medical Oncology and Internal Medicine)

    Medical Doctor


    Hammersmith Hospital

    150 Ducane Road 
    London W12 ONN

    Tel: +44-181-383-3242

    Fax: +44-181-383-3142


     

    Both of these doctors are listed on carcinoid.org.  This website has a lot of good information for recently diagnosed patients and for those of us who have been living with carcinoid for years.  I hope this helps and doesn't confuse you more.  Blessings to you and you son!

  • KimberlyDawn
    KimberlyDawn Member Posts: 5
    #7
    Carcinoid Cancer Patient

    I need help i have been battling Carcinoid Cancer and all of its symptoms since 2009 and its not gotten any better.I had a knot beside my power port went to see my Oncologist about it she sent me to the local ER and they accessed my power port the nurse said she could not draw blood she put the needle in wrong then another nurse came in she accessed it with another needle now my power port has a huge knot sticking out of it and my friend that went with me said it pulled the skin up on my chest and it hurts i am trying to get disabilty and i am so tired of all of this.They said they found a nodule in my neck.My stomach has been cut open 5xs,i know i have a tumor in my left lung and they call them lesions on my left kidney multiply.What is a person suppose to do?

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