More info on my cancer if anyone wants answers...like I do.

I'm going to try to keep everyone updated on here. I have too many friends/family member spread all over the place and I am just too stressed out right now to keep in touch with everyone personally. I'm being selfish, but I hope that you all will forgive me. I have found some wonderful websites that have a lot of information about Carcinoid Syndrome and carcinoid tumors.


I was diagnosed with carcinoid syndrome on 10/20/2008 by my primary care doctor. I have been having issues with chronic diarrhea for about a year. I thought it was just because I dont' eat right and I am what is considered morbidly obese. I'm 5'6" and as of my last dr's appt I weigh 272 lbs. I have a BMI of 43.9. The past 5 years since I have had Angelina I have gained 100 lbs. I was down to 175 lbs when she was 4 months old, then I quit breastfeeding and started gaining weight. I have gained 50 lbs since May 2006. And even with the chronic diarrhea I have continued to keep gaining. I have tried dieting, counting calories, David and I did South Beach diet for awhile, I would lose 10 lbs and then gain 20 back. I stopped trying.

May 2007 my ankles started swelling, a lot. I saw a dr at the clinic at work. She said it's probably from sitting in a chair at work all day and to try to keep my feet elevated as much as possible. Didn't seem to help much but I figured..whatever there's nothing I can do, it doesn't really bother me that much, it doesn't hurt..so.. whatever. I started having hot flashes and stuff..again.. i'm fat, we live in Florida..that's not that big of a deal. Didn't even think much of it. Around the same time the bowel issues started. Bloating, cramping, diarrhea. I just dealt with it. I saw a dr at a walk-in clinic after a particularly bad week shortly after it started. Angelina had just been in the hospital for 4 days for her pneumonia and I though i might have picked up a virus from being in the hospital. He thought I had a parasite so he prescribed me an antibiotic, gave me some anti-diarrheal medication and sent me on my way. I think they may have given me some lab orders, but I never went..what was the point..it's just diarrhea.. oh well Life went on. I didn't have the time to take off work to go see a doctor during business hours. I was on the verge of losing my job from missing work to stay in the hospital with Angelina, and just being out so much with her being sick all the time anyway. So I dealt.

I was in a bad place emotionally. My relationship with David was on the rocks and I was more concerned with getting away from my problems than facing them. My physical health was an afterthought. So from there... January David and i split up. I moved out for two weeks. I moved back in, we started to patch things up. I got sick with a cold. that turned into a chronic sinus infection that caused me to lose the hearing in my left ear...twice. I was sick for 4 months. Weak, tired all the time. Hurting so bad some days, I didn't want to move. But i thought it was just coz I have Chronic Fatigue Syndrome and it was flared up from my immune system fighting off the phlegm and bacteria that was growing in my sinuses. I saw an ENT like 10 times in that 4 month period and everytime i would start to get better... I would get worse again. It finally got better.

Then i hurt my shoulder, I still dont' know how..but I ended up with tendonitis in my rotator cuff. Went to physical therapy for a month or so, started to get better there. All the time just hurting. Having problems with my fingers going numb, pinched nerves in my neck and shoulder and such. I kept on keeping on.

Angelina started on Advair in April 2008, she has been sick ONCE since then. ONCE in 6 months. I can't believe it. but..because of that I have been able to have time saved from work to get myself taken care of so..here it is.. October 2, 2008. I finally get in to get established with a primary care doctor. I saw him 8 years ago, and he is the dr. that diagnosed me with Chronic Fatigue Syndrome when I was 16. I trust him immensely and he is very thorough and always takes the time to listen and talk with you. So many dr's are looking for teh quick answer that isn't always correct or helpful. So I went to him. I told him about hurting, and being tired and about my depression and my anxiety. And then I told him that I have been having diarrhea for a year. He stopped there. Lab work. blood test. urinalysis. and a 24-hour urine collection for a chemical called 5- Hydoxy Indoleactic acid or 5-HIAA. I had no idea what the hell that was. it was a pain in my butt because i had to pee in a bottle for a day. and I didn't know what it was for...it's just diarrhea right? My mom had colitis. my dad had diverticulitis (but then again he's not really biological, so it doesn't really count) So it's probably just colitis or somethign stupid like that. So, he started me on an anti-depressant because I asked him to. He wanted me to come back in 3 weeks to follow up on my lab work and to see how i was doing with the zoloft. So I made the appt for 10/24. I did my lab work. I turned my jug of pee into the lab on Monday 10/13/08. On Thursday, the nurse calls and says "We got your lab work back, dr wants to see you as soon as possible he doesn't want to wait until next Friday"

So of course, I'm freaking out. I knew it was about the pee in the jug. So i researched what the test was. It was for one thing only. To test for 5-HIAA which is a byproduct of serotonin. and If you have elevated levels of 5-HIAA in your urine it means you have carcinoid syndrome. which is caused by carcinoid tumors that have attacked, most likely, your liver. Because the tumors generally form in the intestines (small and large) on the appendix, the lungs (bronchi), sometimes the colon/rectum, rarely the ovaries. But, if the 5-HIAA is elevated in your urine it means that most likely the tumors have mestasized (spread) to other areas. because the liver generally breaks down the serotonin if the tumor is in the intestine of appendix, etc. but once the tumors grow on the liver the liver can't process all the chemicals and they go right into the blood stream causing carcinoid syndrome. Flushing (red face, sweating, hot flashes), diarrhea, swelling of the feet/ankles/legs (although this is rare, and generally means the hormones are affecting the heart) weakness, fatigue. Other things.

My hair started falling out about six months ago. Dunno if that's related or not, but from what i've learned..the chronic diarrhea pretty much prevents your body from really absorbing the vitamins and nutrients from food you eat and you become malnourished.

Anyway, So I knew that dr wanted to talk to me about that test. SO I had David meet me at my appt on 10/20. We convinced ourselves over the weekend that it was my thyroid or something because i have a lot of symptoms of hypothyroidism as well. But, alas. Dr said you have abnormal high level of 5-HIAA. my level was 10 on a scale of 1-8, so it's not terribly high, but.. the fact that it's there at all is bad. A statistic that I read said that the test is 73% accurate at detecting 5-HIAA in urine but if it detects it, it is nearly 100% accurate. Which means that the elevated level is nearly 100% sure that I have carcinoid syndrome.

I have an appt tomorrow, 10/24 for a CT scan to see exactly where/how big/how many tumors there are. I will follow up with an endocrinologist on 10/30 to go over the results and hopefully to map out a treatment plan. These tumors are slow growing so a lot of times they just monitor the growth and treat the symptoms. Unfortunately once you have symptoms it typically means that they have spread so surgical removal is unlikely, and chemo is not very effective. It's just a matter of keeping the hormones they secrete managed to reduce symptoms and hopefully prevent the excess hormones from causing heart failure. I read that something like 85% of people who have Carcinoid Syndrome die from the excess hormones in their system and organ failure than from the actual tumor itself.

I am including some links if anyone wants to read the information I have found to better understand. If you have questions, feel free to comment, it comes to my email...I will respond. Please keep Me and my family in your prayers. Especially David. And my mom, she just found out on 10/17 that she may have breast cancer. She has a mammogram next week that will tell for sure, so keep her in your prayers as well. I love you all. Thanks.

http://www.carcinoid.org/

Carcinoid.com

National Cancer Institute

Mayo Clinic - this is the site Dr. told me to go to

Health A to Z - Neuroendocrine Tumors

Medline Plus Medical Encyclopedia