1. < Neuroendocrine Tumors (NETs)

Large Appendiceal NET, well-differentiated

Posted by mcbyron @mcbyron, Apr 17 6:14pm

Does anyone have long term experience with larger appendix tumors? Especially women in relation to gynecological issues?

My appendix tumor was well-differentiated and slow growing so I imagine it has been there for years (is there any way to tell?). It was 6 cm and had grown into colon where it formed a 2 cm tumor. I watched that for 2 years before having it removed (because I didn't know it was on my appendix as that didn't show on my MRI without contrast). It grew VERY slightly in 2 years and I just knew it needed to come out.

Interestingly, from the time I was 17 on, I would occasionally have such terrible starts to my periods that I would be doubled over in appendix like pain, vomiting, cramping, going to the hospital. Appendicitis was never diagnosed and I was told some people just "have bad periods" and we don't know why.

My question is, am I truly OK to just wait and watch this? PET dotate doesn't show anything (there is a nod on my liver and lung but not lighting up on PET so presumed cysts). I have increased symptoms after my surgery--pain on my left lower abdominal side, crazy bloating before my period, really heavy bleeding. I'm 42 and going to see Ob/gyn. Bladder issues.

HIAA test was in normal range.

Has anyone had a hysterectomy after a NET tumor? Would that be potentially curative or informative? I feel my NET tumors have long been related to my periods somehow and some way...

Could another NET be hiding somewhere in the PET or CT scan? Should I press on despite Drs not seeming overly concerned? I feel like yes!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

anxious88 | @anxious88 | Apr 19 2:48pm

Hey! How did your doctors diagnose your NET? Did it show up on DOTATATE scan before surgery? Did you have right hemicolectomy? Were your lymph nodes affected?

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charliepnet | @charliepnet | Apr 20 5:10pm

I went to MAYO in Rochester last week for a second opinion. The NET specialist and team in St. Louis had me on a wait and watch plan. I was really just wanting to find out if Enucliation would be an option for me. However when the surgeon came in the room the first thing he said was it’s time to get the tumor that is on the head of my pancreas taken out. Gonna have a Whipple procedure done May 29. Any prayers would be appreciated.

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mcbyron | @mcbyron | Apr 20 11:13pm
In reply to @anxious88 "Hey! How did your doctors diagnose your NET? Did it show up on DOTATATE scan before..." + (show)
@anxious88

Hey! How did your doctors diagnose your NET? Did it show up on DOTATATE scan before surgery? Did you have right hemicolectomy? Were your lymph nodes affected?

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Hi, I found it during colonoscopy. It showed up as 2cm polyp so close to my appendix the appendix would have to be removed as well. I had an MRI done (without contrast as I was nervous about it) and it didn’t show anything else anywhere except anode they presumed was a cyst on my liver. I watched it he colon nodule for 2 yrs and on next colonoscopy it was still there and very slightly different so I scheduled appendectomy and removal. Turned out it was a large NET. My dotatate scan is currently clear but I still have some symptoms I think are relating. I’m wondering if I should delve deeper to find a tumor? Dr Liu seems to think it’s fine to wait and watch. Curious to know more about others experiences as well. For the record, I had terrible right side pain, cramping, vomiting with my periods from age 17 on…only on occasions. Maybe 5 times before I got pregnant around age 26. I think it’s all related!

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mcbyron | @mcbyron | Apr 20 11:15pm

Also no I haven’t done the hemilectomy and it doesn’t appear to be in my lymph’s but I would imagine it’s been around so long it probably is somewhere…

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