Confused about diagnosis: Carcinoid tumor in rectal area
I am confused about my diagnosis and the information the colorectal surgeon gave me. My oncologist has referred to what they have found as cancer but the surgeon referred to is as if it is precancerous. I had a colonoscopy that found a tumor. That was tested and it was a carcinoid tumor. I then had a sigmoidoscopy which produced removal of a polyp. Finally, recently I had an MRI of the pelvis that showed a tumor in rectal area. Oncologist sent me straight to surgeon. Surgeon and oncologist noted needed removal of tumor with surgery. After reading about the surgery proposed online (Mayo clinic)it seems to be stage 1 rectal cancer. Is this cancer?
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My original surgery for rectal cancer (when they closed the anus) was three years ago, following massive doses of chemo and radiation. A few months after that surgery I had 52 hyperbaric treatments in an attempt to get the surgery site to heal. The site did heal eventually (after a fashion) but never did feel "normal." Regular CT scans after that showed no sign of cancer. A couple of months ago the burning at the "old" surgery site became intense to the point where I couldn't stand it. I went back to surgeon who performed my surgery and he said, "I'm not going to touch that. It will never heal." Eventually I ended up with another surgeon who did a biopsy on the lesion which was labeled Squamous Cell Carcinoma. That surgeon sent me to a radiologist to get her opinion. The radiologist ordered a PET Scan which confirmed the Squamous Cell Carcinoma, but found no evidence of metasis. The radiologist and the surgeon then conferred and decided to try surgery on the skin cancer, hoping it will heal better this time because there has been no radiation to that area in over three years. I am meeting with the surgeon on Monday to finalize the plan for surgery.
Hi @4237220, any update? Has your cancer been staged? What are your treatment options?
@jacqquie, how did the meeting with your surgeon go?
I had no other options besides more surgery, which I had yesterday. They THINK they got all the cancerous tissue removed. I know I will have a very sore bottom for a long time because it is of course an open wound. But…you do what you have to do. They hope it will heal better this time because there has been a 3-year time lapse since the last radiation versus the 3-week time-lapse last time. I did go into A-Fib right after surgery, but they got it controlled rather quickly with medication. I will be seeing a cardiologist this week.
My best wishes to you.
This is why I continue to be confused about my diagnosis. I met with a different colorectal surgeon. My oncologist sent me to a new one. The original surgeon had opted for a PET scan that the insurance eventually denied. When I went back to my oncologist, he disagreed with the order of the PET scan and said it was not necessary. The new surgeon ordered a sigmoidoscopy immediately (which is this Wednesday) and surgery to remove what is labeled as “malignant tumor” on my paperwork (that surgery is next Wednesday). I will be having a low anterior resection done. I did ask that surgeon about whether it is cancer or not. He said that it was not exactly but that they treat it like cancer. That carcinoid tumors and endocrine. That left me more confused. The surgery he is performing is one is saw listed for stage one of colorectal cancer. His explanation didn’t make sense to me.
Thank you for this link. It was very helpful. I have done a 24 hour urine test. What should I look for with the results?
@4237220
After rereading many of your posts with Colleen, @colleenyoung, I think you would be wise for you to see a NET specialist. Carcinoids and/or NETs are definitely cancer but not the typical cancers that general oncologists see in the majority of their patients. If you could get even a virtual consultation, that might be very helpful to you in putting all of this together and getting the best treatment plan in place. Here is a list of these specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
If you have any problems with insurance coverage, please know that you can appeal any insurance denial. The process is different with every insurance company, but many patients have gone through this process.'
I would like to follow up with you. Will you let me know how this Wednesday's appointment goes?
Hello @4237220
I was noticing that your last post was a couple of weeks ago and I was wondering how you were doing?
I look forward to hearing from you again. Any new information from your doctor?