Cancer :: Neuroendocrine Tumor (Carcinoma)


Dec 28, 2015

In 2013 I was diagnosed with N.E.T. malignant of the ilium where small intestine meet large intestine.  They found it during a colonoscopy, when they did the surgery to remove they found one more tumor in the appendix.  The tumor in the intestine was 3 cm and the one the the appendix was 1 cm. The one in the intestine went through the wall so they took lymph nodes 12 found only 11 - 1+ , so they said they needed to keep an eye on me for 2 years.  These are they results of my chromogranin test which don't make sense to me???

Close to surgery date when I had 2 positive tumors

Chromogranin A

9/13   53.    <93
2/14.  97.    <93
4/14.  76.    <93
7/14.  60.    <93
7/15.  92.    <93

With the 7/15 test they found 3 enlarged lymph nodes around the surgery area during the C.A.T. scan but very slightly enlarged like 2 mm enlarged each not enough for him to worry. But he's going to retest in January, he said it might be just an infection around the surgical site.  But he did a full blood work up and my count wasn't up.  

During the 2 years since the surgery I have had extreme pain in the surgical site and in another site in there they've done all external testing they can but when I suggested a colonoscopy to view the surgical site they said my Oncologist said one was not needed to view tumors.  

I asked my primary care doctor to speak to the gastrointestinal doctor and they refused to do the test. So I went outside the hospital that did my surgery they refused to do the test saying go back to the place you had your previous test done. So how do I know if this is from the surgical site or the lymph nodes since when I actually had to malignant tumor's my levels were within normal range?

If you need to know more please ask .  At this point I'm having a very hard time trusting my physician care.  

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I want to point out that I am not so active anymore, I used to play for a football team and was a very active person til age 19. At age 19 everything changed. I quit being active and got lazy after going into a relationship, started to drink alcohol at that age and started to party alot and drink a lot of alcohol at the parties.

Before I was symptom free my diet was terrible, I used to workout 3 to 4 times a week (3 years ago), it was very on and off with the workouts so I still had symptoms then, like itching, irritation and bleeding(fresh red blood). My stool used to always be hard and I went to the toilet few times a week (2/3 times a week). I also used to sit on the toilet for over a long time(which is not good at all because of the pressure it puts around the muscles of my anus). I used to work as a checkout employee on a supermarket where I sat for almost 8 hours.

Right before I got the symptoms again after I was done with Scheriproct, I had bowel movement almost everyday and my stool used to be soft. No pain or itching, no irritation and external hemorrhoids. No blood at all and the time I used on the toilet was reduced extreamly to finish my bowel movement in maximum 5 minutes (usually 2 to 3 minutes). Then the day came when I had not a bowel movement for 3 or 4 days after eating alot of Pizza and meat I went in to the toilet and pressed a little to get some poop out because I was afraid of having hard stool again, but after that day the symptoms returned.

Here is a list of the symptoms I got, symtoms I had and symptoms which I never had.

Symptoms I have(+) had(-), never had(x)

+ Itching (not so often as before)
+ Irritation (not so much as before)
+ Blood on toilet paper and poop (fresh red)
+ Sweet, but an awful scent from poop (Don't know the reason, maybe because of the blood coming in contact with the poop)
+ Clumps on anus (External Hemorrhoids)

(+/-) Hard Stool, not so hard as it used to be and sometimes not hard at all and normal(feels great).. Last bowel movement = Hard to begin with then got softer.

- Used to bleed a lot and get fever

x NO Black Poop
x NO Weight loss
x NO pain in the abdomen
(I can't think of any other symptoms at the moment that I had or never had, sorry)

I have recently changed my diet and started to workout properly(second session today). I eat more vegetable food and drink a lot of hot drinks and water. I also eat fruit and the result was my stool was still a little bit hard to begin with, did not struggle getting it out and there was blood again(not much, but with that sweet and awful scent), but it has only been 2 days since the other bowel movement when the symptoms returned so maybe it has not healed up yet and that my diet has not taken effect yet, after all I ate many non fiber rich food these last days before changing my diet!

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By the way I have a question: If I have Colon Cancer, would I always have blood on my stool when I first have it or will it cease to bleed sometimes? As I mentioned, I was symptom free with no blood after using Scheriproct suppositories and ointment and was symptom free 3 more weeks without Scheriproct.

I am planning on visiting my doctor and let him take a look. I even took pictures of my anus as it is now to show him incase I chicken out to show him.

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