Newly diagnosed - neuroendocrine tumor in intestines
on routine ct scan found a small abdominal mass. wasn't clear where it was originating from . went to gyn oncology. finally decided it wasn't gyn. had mri. was scheduled for surgury but surgeon wanted endodrine to clear me first. she did labs, 24 hr urine and pet scan. some labs and first urine got "screwed up by lab. my tumor has gotte.n much ,much larger. it has been a month since this happened. my surgury has been rescheduled twice. i am scared!!!! i feel like by the time i can have surgury they will tell me "it is to late. i had faith in all my drs seen here but now worried i should have gotten 2nd opinions at the start and now it is to late.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Not scheduled yet, I’m waiting to hear back on the appointment. So many possible side effects.
I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms as well as reducing the tumors.
When will you be having your first injection?
Get to a university hospital/teaching hospital. Nets are very slow growing. I have had mine for almost 20 years. They are rare hence the recommendation to a university hospital.
Just off a virtual call with the doctors. They are putting me on a regimen of monthly Octreotide injections to shrink the tumors and reduce the carcinoid symptoms.
Thank you Ladies I am really sorry about the other tumor, It is very weird with the Net that is why my doctor has a Cat scan done to make sure it hasn't spread.Does anyone else take Biologics I could not help but take my cosentyx this morning my arthritis not doing good.I dont even know if that is what caused it.My thoughts and prayers that we all get through this
I appreciate your response. It is confusing to try and figure out the reasons for NETs, isn't it? You mentioned that you have had diarrhea and flushing. These can be symptoms of carcinoid syndrome and there are monthly injections to help with those symptoms if carcinoid syndrome is the culprit.
Have you mentioned these symptoms to your U of M oncologist?
I appreciate the update but sorry to hear that an inoperable tumor was found. You must be very disappointed. What type of scan/test was used to find this tumor?
I look forward to hearing from you again and I hope that you continue to post during this process.
Was the tumor found based on symptoms you were having?
Hi. I ask have had three surgeries and to date no other treatment. However, I was just diagnosed with another tumor that for numerous reasons is inoperable. Protocols not yet determined. I will post you. Smart to take your case to a university/teaching hospital.
I take cosentyx for arthritis which I sometimes wonder if this could be causing my NET for I found info that Cosentyx causes NET,By looking over my meds I take more than Cosentyx with secukinumab in it.It is a biologic drug I have reached out to my doctor and the FDA both say it is not researche with causing it.I am so wishy washy about taking it,It helps alot because mine gets so bad that I cant move plus fibro.Just a mess.My Dr Enzler he is really good so I am sure he knows what he is doing.Just wonder because so many people have treatment.I feel better knowing someone is out there.I do have the flushing and diahrrea and have been having it for been years always said it was IBS.I get nausea alot.It hard to say for I am insulin dependent for diabetes.I live in the upper peninsula the care is not good at all.I wish you luck
It has been a few weeks since you last posted. I was thinking about you and wondering how your daughter was doing with her treatments.
Also, the NETs support group will be meeting this Thursday, Feb. 2, via Zoom. I hope you can join the group.
Could you post an update when it's convenient for you?