Hi! I'm 42, dx'd in Feb of 2010, carcinoid syndrome since 2004. Midgut primary, lymph node involvement, and continued carcinoid syndrome. I went to the dr thinking I had gall stones or an ulcer... Nope! just stage 4 carcinoid cancer.
After my surgery in April 2010, I was told that I was "cured". But I was still having symptoms of carcinoid syndrome. About 6 months after surgery, I went to Mayo Clinic in MN. After extensive testing, they too said "You're cured!" However, I knew that between the pain attacks I was getting and carcinoid syndrome that continued, I knew they were wrong. When I asked them what was causing the pain attacks and symptoms that was exactly like carcinoid syndrome (the same thing that had been happening since 2004) - they shrugged and said, "We don't know, but we know it's not carcinoid." So, I went to Dr. O'Dorisio at the University of Iowa Hospitals - a true carcinoid cancer specialist. AND, he is an Endocrinologist, who better than to go to for an endocrine cancer? Dr. O'Dorisio is AWESOME! I told him everything and he said, "you're right. You're not "cured". And you'll have this for the rest of your life." FINALLY! I felt like I finally went to someone who knew this cancer inside and out and understood what I was experiencing. Dr. O'Do ROCKS!
I've had lots of problems with everything. I seems like it's just one thing after another. Pancreas on the fritz. Thickening of all 4 heart valves. Mets to my liver, spleen and mediastinal (chest) lymph nodes. I've developed asthma, which is a sign that it's spreading to my lungs. I also have cushing's syndrome - which leads us to suspect the spread to the lymph nodes in the chest and lungs may have been there for a while and we're just now seeing them.
Now, I'm in the process of being dx'd with medullary thyroid carcinoma (MTC) too. My calcitonin levels have been too high for over a year. that's the main tumor marker for MTC. Dr. O'Do wanted to keep an eye on it as it was still lower than most MTC patients he sees. Last month I saw him again and my thyroid had taken a nose dive. TSH too high and Free T4 too low. I had my ultrasound and CT scans today to look for nodules. The ultrasound tech was nice enough to let me know that he did see several nodules on my thyroid. So I should find out in a day or 2 what the plan is next. Biopsies I would think...
I haven't been able to work since my carcinoid dx. I've continued to go downhill. That's not to say that my docs and medical team aren't awesome - because they are! My body is just taking it's own unique path. It seems that some of us do well and remain fairly stable, while others don't fair so well.
Well, now that I've written a book, I'll wrap it up. I'm the support group leader for the state of Iowa (affiliated with the national Carcinoid Cancer Foundation). I've been surprised at how many of us there are in Iowa...makes it seem like it's not as rare as we think!
I look forward to getting to know all of you (if I don't already)!
My best,
Jen Holm
Iowa Carcinoid Connection, Facebook support grp for Iowa carcinoid and NET patients
"I have suffered from depression most of my life, but had some long, non-depressed times. The last 16 years have been an on-going, constantly worsening nightmare for me medically, socially and with my family. 11/2008 to the present has been the worst time in my life, and new things just keep piling up. During that time I’ve gone from being mostly homebound to being totally homebound due to the errors of about 2 dozen doctors who overmedicated me so badly that I came home w/ 4 conditions I didn’t go in with. I spent months wanting to die, and finding MDJ may well have saved my life. It’s one of the worst feelings to know that nobody on earth needs you for anything; but now that I’ve been a group leader for awhile, there are people here who need me. Thanks MDJ." (Sylvia4648)
