99.9% sure I have a carcinoid tumor

[Hypo27]

I went to the endocrinologist around 2 weeks ago about my low testosterone. He running a bunch of blood work to figure out why but I also told him about my facial and chest flushing I frequently have along with the stomach pain getting worse. He asked me if I ever heard of carcinoid tumor and mentioned the possibility I could have it and said he’s check for it.... I’m completely distraught that this is carcinoid I’m so scared... It would be pretty rare for a 28 year old male wouldn’t it??? I knew this was cancer :(

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And the fatigue has really been getting so bad which tells me it’s probably spreading...

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Please anyone?!?

[Leslie735]

My mom went through this scare earlier this year. She had symptoms and even some funky lab work. Dr did a full body CT scan and everything came back clear.

[NervUs]

[QUOTE=Hypo27;1831152]I went to the endocrinologist around 2 weeks ago about my low testosterone. He running a bunch of blood work to figure out why but I also told him about my facial and chest flushing I frequently have along with the stomach pain getting worse. He asked me if I ever heard of carcinoid tumor and mentioned the possibility I could have it and said he’s check for it.... I’m completely distraught that this is carcinoid I’m so scared... It would be pretty rare for a 28 year old male wouldn’t it??? I knew this was cancer :/QUOTE]

Seems like there might be some context missing since I don't see what screams tumor about facial flushing and stomach pain. Why did he think it was a carcinoid? Can you share additional details of what he actually said?

I am only familiar with carcinoid tumors in the lung but, from what I understand, carcinoids are slow growing cancers and not life threatening. Not the news anyone wants to hear but also not as devastating as "regular" cancers, and not likely to kill you.

I hope you don't have a carcinoid but take a deep breath and take it as it comes. You are far from knowing you have one and, if you do, it is most likely very survivable without huge impact on your life.

Keep us updated!

[Hypo27]

[QUOTE=NervUs;1831157]

I went to the endocrinologist around 2 weeks ago about my low testosterone. He running a bunch of blood work to figure out why but I also told him about my facial and chest flushing I frequently have along with the stomach pain getting worse. He asked me if I ever heard of carcinoid tumor and mentioned the possibility I could have it and said he’s check for it.... I’m completely distraught that this is carcinoid I’m so scared... It would be pretty rare for a 28 year old male wouldn’t it??? I knew this was cancer :/QUOTE]

Seems like there might be some context missing since I don't see what screams tumor about facial flushing and stomach pain. Why did he think it was a carcinoid? Can you share additional details of what he actually said?

I am only familiar with carcinoid tumors in the lung but, from what I understand, carcinoids are slow growing cancers and not life threatening. Not the news anyone wants to hear but also not as devastating as "regular" cancers, and not likely to kill you.

I hope you don't have a carcinoid but take a deep breath and take it as it comes. You are far from knowing you have one and, if you do, it is most likely very survivable without huge impact on your life.

Keep us updated!

He told me that the flushing plus stomach pain and diarrhea could be carcinoid.... I read that it’s usually found pretty late and it is aggressive once it has spread which I think it has :(

[Fishmanpa]

Seems like there might be some context missing since I don't see what screams tumor about facial flushing and stomach pain. Why did he think it was a carcinoid? Can you share additional details of what he actually said?

Agreed. I've never heard a doctor drop something like that on a patient... ever and I've been there/done that. Plus, a cancer that's ridiculously rare (1-2% of all cancers) and typically won't present as the symptoms described. I recognize this pattern of HA. I've seen it before. Curious as to why you waited 2 weeks before the post?

Positive thoughts

[Hypo27]

I’m so scared :((((

[pulisa]

A 24 hour urine collection test is the first thing they do to look for certain markers. Have you done this yet?

[axolotl]

Hypo - did the doctor really raise this out of the blue or did you mention it first? Or were you pushing hard with a "could this be cancer?" line of questioning, and forcing them to speculate that it could?

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Also, while I'd also have my HA set off by it, a doctor testing to rule something out is a million miles away from them thinking you have it.

[Anxiousamyj]

2 weeks is an awfully long time for you, hypo, to sit on something that the doctor mentioned having to do with any kind of tumor. This might be something you've hyped yourself up with as a combination of googling and anxiety. I doubt any doctor mentions extremely rare cancers and sends you on your way without making sure it's been followed up on very quickly. I know you're in the US and I am as well. As a fellow HA sufferer, I know you can get whatever tests run that you need way sooner than 2 weeks if you're freaking out about it. You previously mentioned your appointment with the endocrinologist but failed to mention cancer. What are you looking for from this board? You always have really nice people respond that are either trying to help you see reality or reassure you.

[Hypo27]

A 24 hour urine collection test is the first thing they do to look for certain markers. Have you done this yet?

I have to go back October 31 to get the labs done he mentioned the 24 hour urine test so I guess he ordered it. I saw my pcp a few days later and told him that the endo said there was a possibility I had carcinoid and he did a random urine for 5-HIAA but not sure that’s gonna show much because it’s suppose to be 24 hour right? The endo did say it would be pretty rare for me to have it but wanted to make sure it wasn’t.

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The reason he didn’t do labs the day I saw him is because he’s wanting to recheck my testosterone after I’ve been off the testosterone shot a few weeks so I guess I’m getting all the test done st once.