Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Hi , First a long-distance hug, and my best hopes for the best possible outcome. It seems providential that you had appendicitis when you did--otherwise, you wouldn't have known about this little tumor and it might, from the sounds of things, have spread. Let's hope getting the appendix out of the way took care of all of it! Doing surgery seems like an awfully invasive way to determine if you have more of the same in your bowel--isn't there any other way to test? I find it interesting about the bp, as well--I'm not exactly sure why you were thinking of me, perhaps because I posted before trying to figure out the relationship between bp and GD? Mine's always been low, except when I get hypO it rises like a rocket. As does my cholesterol level, and I always thought those two related but then there are all those people who are hyper with high bp. Finally, I strongly would suggest looking into some alternative meds for this as well. I don't know if it applies, but anecdotally, my husband had a prostate cancer patient, and elderly man, who with Chinese herbs had his (I think it's PSA but don't quote me here) results reverse over time. He ultimately did pass of heart failure, but after 10 years when the prostrate cancer went from severe to much, much better. Anyway, it seems to me that something in the bowel if it's there at all, would be responsive to some herbal meds treatment. And if it's not there, the one blessing of Chinese herbs is they don't tend to do any harm. More hugs, Terry > > Reply-To: graves_support > Date: Tue, 11 Nov 2003 10:10:12 -0600 > To: <graves_support > > Subject: bad news from B > > Greetings all, > > Well. > > I had my appendix out on Oct. 29th and found out yesterday that I have a rare > form of cancer. The pathology report found a pea size carcinoid tumor in the > appendix. Happily (if there is such a thing) the size, shape, and type of > tumor all indicate that the odds are overwhelmingly (like 98%) that the > carcinoid tumor is limited to the appendix and now gone. > > The tumor is also known as a neuroendocrine tumor!!! It produces seratonin > and sometimes can create havoc in the body as the seratonin and other hormonal > imbalances begin to affect all body systems. > > I'm writing for a couple of reasons (in addition to the great support). > First, does anyone know anything about these tumors? I'mtrying to get a > handle on the carcinoid's relationship to the endocrine system. > > Second, and I'm thinking specifically of Terry here, one of the effects of > these type of neuroendocrine tumors or carcinoids is high blood pressure. > We've had soem discussions of how some of us have had high blood pressure > post-thyroid problems. Mine is now back to 100/60 after the appendix (and > thus, the carcinoid tumor) was removed. THree weeks ago my BP was 140/90. > > Anyway, what I have is extremely rare and not a death toll (hoepfully there's > a collective internet sigh of relief, now). If it is isolated to the > appendix, then the drama's done. If not, I'll have more surgery to remove > anything else. THe oncologist will decide next week if I should have surgery > to see if there's more in the small bowel or if we're just going to go wtih > the odds and say I'm fine. THe worst case scenario is if the cancer moves > into the liver, which is fatal. That said, I show no symptoms of that (my > tumor was small enough that they're calling it incidental) and even if that > happens, the illness is glacial in speed and people can live 10-20 years with > the cancer. Still. I'm leaning toward the 'I'm fine " scenario, as 10 - 20 > years is a blip when you have a 9 month old baby who needs to be steered > through his mid-30's, minimum, thank you! > > I'll soak up all the prayers and good wishes!! > > B > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Oh my gosh, ! You're so calm, I'd be freaking out big time! I'm glad they found it and I'm praying that it was just in the appendix! How very interesting about the neuroendocrine tumors. Hadn't heard of such a thing. makes you wonder if it's somehow all connected, doesn't it? I hope you get some more info on this from the doctors. I'm glad that the outcome looks good! What a relief there! When do you find out if it was isolated to the appendix? Sending lots of prayers and good wishes! Take care of yourself and keep us updated! Hugs to you and all the kids! bad news from B > Greetings all, > > Well. > > I had my appendix out on Oct. 29th and found out yesterday that I have a rare form of cancer. The pathology report found a pea size carcinoid tumor in the appendix. Happily (if there is such a thing) the size, shape, and type of tumor all indicate that the odds are overwhelmingly (like 98%) that the carcinoid tumor is limited to the appendix and now gone. > > The tumor is also known as a neuroendocrine tumor!!! It produces seratonin and sometimes can create havoc in the body as the seratonin and other hormonal imbalances begin to affect all body systems. > > I'm writing for a couple of reasons (in addition to the great support). First, does anyone know anything about these tumors? I'mtrying to get a handle on the carcinoid's relationship to the endocrine system. > > Second, and I'm thinking specifically of Terry here, one of the effects of these type of neuroendocrine tumors or carcinoids is high blood pressure. We've had soem discussions of how some of us have had high blood pressure post-thyroid problems. Mine is now back to 100/60 after the appendix (and thus, the carcinoid tumor) was removed. THree weeks ago my BP was 140/90. > > Anyway, what I have is extremely rare and not a death toll (hoepfully there's a collective internet sigh of relief, now). If it is isolated to the appendix, then the drama's done. If not, I'll have more surgery to remove anything else. THe oncologist will decide next week if I should have surgery to see if there's more in the small bowel or if we're just going to go wtih the odds and say I'm fine. THe worst case scenario is if the cancer moves into the liver, which is fatal. That said, I show no symptoms of that (my tumor was small enough that they're calling it incidental) and even if that happens, the illness is glacial in speed and people can live 10-20 years with the cancer. Still. I'm leaning toward the 'I'm fine " scenario, as 10 - 20 years is a blip when you have a 9 month old baby who needs to be steered through his mid-30's, minimum, thank you! > > I'll soak up all the prayers and good wishes!! > > B > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 , I am so glad that they removed the cancer. Hopefully that is the end of it. I am sending good wishes your way. Your calm optimism is the best attitude you can have. Please let us know how you're doing. Hugs, At 11:10 AM 11/11/2003, you wrote: >Greetings all, > >Well. > >I had my appendix out on Oct. 29th and found out yesterday that I have a >rare form of cancer. The pathology report found a pea size carcinoid >tumor in the appendix. Happily (if there is such a thing) the size, >shape, and type of tumor all indicate that the odds are overwhelmingly >(like 98%) that the carcinoid tumor is limited to the appendix and now gone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 My thoughts and prayers will be with you and your family as your go forward in this unanticipated situation. I guess in a way it's a blessing that your appendix acted up, else you wouldn't have known about this tumor in it. Sounds like your situation is heading in a positive direction, and I'll pray that that is the course it keeps. Please keep us all posted my dear. the other wrote: Greetings all, Well. I had my appendix out on Oct. 29th and found out yesterday that I have a rare form of cancer. The pathology report found a pea size carcinoid tumor in the appendix. Happily (if there is such a thing) the size, shape, and type of tumor all indicate that the odds are overwhelmingly (like 98%) that the carcinoid tumor is limited to the appendix and now gone. " Grief can take care of itself, but to get the full value of a joy you must have somebody to divide it with. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Hi B, How wonderful that they found this in the biopsy from your appendix. Incidental tumors are generally always confined. Your doctor can run a follow-up serotonin level to see if you're secreting excess amounts. Often, the levels of catecholamines, epinephrine and norepinephrine are high, and elevated levels mimic symptoms of thyroid hormone excess. Hope you heard my big sigh of relief when you mentioned it was an incdidentaloma. Sounds like your appendix acting up was a providential occurrence. Best, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Hi, , Just wanted to send my best wishes in dealing with this latest wrinkle. What " luck " that, in addition to your immune system messing with your endocrine system, you got a tumor that messes with it as well. Just what the doctor ordered - not!! With that little bit of stealth mischeif removed, hopefully life gets better from here. Best, Jill Quote Link to comment Share on other sites More sharing options...
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