Small Intestine Adenocarcinoma - Please Help
Hello. I'm new to this site and am looking for folks to talk with and share experiences. I'm 39 years old and was just diagnosed in August 2013 with adenocarcinoma of the small intestine (jejunum location). It's been terrifying. For almost a year I was having some nondescript abdominal pain, underwent clear endoscopies and colonoscopies, and had not received an explanation. In August, I went to the ER feeling quite sick but fully expecting they would send me home with gas. Instead, they did a CT which showed a small bowel obstruction and admitted me to the hospital. While the hospital conservatively resolved the obstruction, my GI doctor didn't like what he was seeing on the scan and was pretty sure it was a tumor. I was shocked and terrified and when he performed a more invasive endoscopy the following week to biopsy the mass, he confirmed the diagnosis.
Now I am beginning treatment. I've recently had a small bowel resection where the surgeon feels they successfully removed the entirety of the tumor and several lmph nodes for evaluation. The tumor did breach the serosa and was about 6 cm, which automatically categorized it a T4 tumor. Amazingly, they did not find anything in the surrounding tissues, lymph nodes, nerves or blood vessels. There was no evidence of metastatic spread, and so my T4N0M0 designation equated it to a stage 2b small intestine cancer.
The surgeon felt everything went as well as he could have hoped and there is currently no evidence of disease. My CEA level is less than measurable, which is also good. However, given certain risk factors for recurrence (T4 tumor, obstruction, MSS-S) they want to treat aggressively with FOLFOX chemotherapy to reduce the likelihood of recurrence. Even with this though, there are of course no guarantees and I am terribly frightened. The statistics I can find online are quite dismal and are in contrast to the somewhat good prognosis I have been given both at my local cancer treatment center and the second opinion I received at Memorial Sloak Kettering (who say I am being treated with curative intent, and so are unwilling to discuss the potential recurrence situation at this point). I'm being treated similarly to colon cancer of similar stage because this is such a rare cancer that they don't have a lot of direct and applicable data, which is also a little scary.
So as you can imagine, I have tons of questions.
- Has anyone here ever had small bowel cancer? What was your experience? Is this a curative situation?
- What was your experience with chemotherapy and the alien pod port that I will be having inserted tomorrow? I'm frightened of the neuropathy, debilitating cold sensitivity, and risk of infection in particular?
- How do you handle the constant fear and pit in your stomach about the uncertainty and potential recurrence?
- Is it possible to okay (perhaps even cured) years later? Not to sound greedy, but at 39, I'm wanting 50 more years, not just five.
Any help, support, or experience you can provide would be super much appreciated. Thank you!
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