I have cancer and I'm 29.... just found out today. :(

ChicagoCollector

Well, after my last post in the liver cancer forum, what we feared was coming came... After biopsy, I was told that my liver tumor/s was indeed malignant. We're still waiting for more information from the doctor, but so far, they say it's a carcinoid / neuroendocrine tumor. At this point, we don't know if there's a primary cancer somewhere else, or specific to the liver? A site outside the liver seems more likely? I don't know what stage I'm at yet either. This is all very new to me... I feel healthy and my labs are all pretty good! I'm young, fit and active... I've been having stomach pains off/on, for a while, which is how I ended up going to the DR in the first place. So, does anyone know about this kind of thing? What am I supposed to do? What questions am I supposed to ask? Honestly, I'm shocked... I'm a young guy, just turned 29, didn't expect this at all? I'm at the University of Chicago for medical care, so I'm sure they are good... but should I look elsewhere?

Really.... what do I do....?

Adagio7780

CC, wish I could help with the waiting, I know how tough it is. It has been only five weeks since my diagnosis (Pancreatic Stage IV mets to peritoneal) and the waiting between appointments puts your life on hold. I just got back from my first appt at Duke University and start chemo 02/10, so at least I'm in the game now. I'm sure in the meantime you will do what most of us do, scour the internet for information on your disease. It helps me to remember that I am much younger (54) than most pancan patients, have never smoked, and am in pretty decent health otherwise. Your age and physical conditioning should also make you a prime candidate to be a long-term survivor. You are at a top-notch treatment facility, and your doctors should be giving you straight information on your prognosis.

I wish you the best going forward. Please let us know how you are doing.
_________________
Man tracht, Got lacht (Man plans, God laughs)

ChicagoCollector

Thanks Adagio... yes, I guess youth is on my side... my good Buddhist friend told me today..."The Situation is the Situation....it just IS...this all means nothing. When you can accept that, you can accept anything..." I may have misquoted a bit, but it's close, and I liked it! I guess I need to accept it, then tackle the sh*t out of it! But being young, it's hard... just got married a year ago... want kids and a long life! I have my own business and things have been going really well, even despite the poor economy. So, just when you are on top of the world, you get this news? So, I have a lot on my side, but it is scary and a so big to take in. But yes, I will stick with this forum and keep you posted! Your response means a ton to me... it's good to talk to others about their trials.... best!

mjlueck · New User Joined: 26 Mar 2008 Posts: 4

I'm so sorry to hear your news.
I haven't visited this site in awhile but just decided to pop on. I was 28 when my liver tumor was found, and it turned out to be a very large carcinoid tumor. Mine was not in the liver, but rather hanging off the liver and was easily removed. They have been searching for the primary site ever since, because a primary liver tumor is so rare, but they've never found it. I go every 6 months for testing.
You may want to visit www.carcinoid.org. They have a ton of great information and resources. I know it helped me when I had a thousand questions.
You Buddhist friend is right - it is what it is...but, sometimes that doesn't make it any less scary!

ChicagoCollector

Hi,
Thanks for the note. Mine turned out to be Carcinoid too. However, there are too many tumors in the liver to resect them? Also, can't find the primary either? I'm at Northwestern Memorial in Chicago, and they seem to know what they're doing. They were my 2nd opinion. I don't have the syndrome and my tumors are not secreting, so that's a plus. I'm currently in Sandostatin, since they think that will help slow things down. If it progresses, I'll switch to Y90.

You can read about it on my blog, but don't want to post the link here for a number of reasons.... If you're interested, let me know how to send it to you.

mjlueck · New User Joined: 26 Mar 2008 Posts: 4

Mine never secreted hormones either and I had no symptoms. Mine was found by 'accident' during an ultrasound after I had a gallbladder attack. I never had pain, symptoms or anything.
I would love to read your blog. You can email me the address at mjayknits@charter.net I'd love to take a look.

How many tumors did they count? Did they discuss chemo at all? I know they haven't thought chemo to be very beneficial for most people, but you never know. Mine was found in 2006 (October) and, well, it's a long story, but it wasn't removed until June 2007, and now I go every 6 months, alternating between CT scans and Octreoscan to reduce the amount of radiation I'm being exposed to.

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