Connect
How many doctors did you see to get to your NETS diagnosis?
I've had the NETs tumor for a long time and saw many doctors before diagnosis. My journey lead me down this road:
2013 Admitted to ER. Suspected AVM of the small intestines. Endo, Camera pill and colonoscopy. Definitive answer not found.
2019 Admitted to ER. Suspected AVM of the small intestines. Endo, colonoscopy with CT scan. Nets tumor present in images but missed at that time.
2022 To primary with GI pain/problems.
2022 Surgeon for Gallbladder removal (thought this was the fix)
2022 GI Doc visit with continued GI problems and after CT referral to surgeon.
2023 General surgeon preformed surgical biopsy (inconclusive)
2023 Surgical Oncologist visit ordered first PET. Positive for suspected Nets
2023 Radiologist preformed CT guided needle biopsy to hot lymph node to finally get a NETs diagnosis under the microscope.
I think it's interesting that it took 11 years to get that Nets diagnosis. This can be a tough thing to figure out. What has your journey been like?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
@pamela1685
It sounds like the endocrinologist who tested for intrinsic factor antibodies was a remarkable doctor! He was able to predict your future health issues 20 years ago. Is he still in practice?
Yes, I agree, looking good is OK with me as well. I remember talking to one person who complained about it. She felt that she didn't get much sympathy from friends and family because she didn't look like a cancer patient.
I'm glad that you found this community. I hope you will continue to post. You have an encouraging story of advocating for yourself. We all need to hear these stories.
I had 3 ER visits where there were a variety of inconclusive diagnosis. Not sure if anyone else had this but I couldn’t keep food down. Every time I ate there was a strange symphony in my gut that always ended up in the loss of my meal. By the 4th ER visit at a different hospital thank god they decided to remove my gall bladder. I knew this was the cure or hoped so. Within a week of being released from my gall bladder surgery I was back in the ER laying there crying and praying for them to believe me. Finally and I don’t know how many doctors later a female surgeon did an exploratory and found it. By then of course had munched through my intestine wall. So far it has traveled to my ovaries and liver. Just started chemo a few months ago
More good days than not😁
-
Like -
Helpful -
Hug
2 ReactionsMy former endocrinologist Dr. Kenneth Woeber was the head of UCSF endocrinology when I last saw him 20 years or so ago. He was already in his late 60s or early 70s then, so I'd doubt that he's still in practice. But I think he was working on a paper then about the high incidence of autoimmune atrophic gastritis among those with Grave's since that, too, is an autoimmune disease.
I just read your profile, and was humbled by all that *you're* going through. Thank you for moderating this site, and for all your warm responses despite all your health challenges, too. I hope you're doing well.
-
Like -
Helpful -
Hug
2 ReactionsI appreciate your kind remarks, @pamela1685. So many of on Connect have experienced a myriad of health challenges and I suppose that is what keeps us reaching out to others to provide support to those who are like us! I don't believe that any of us should ever walk alone in times of health crises.
I am doing well. In terms of health issues, it seems to be under control for the time being. I live a balanced lifestyle which make a difference.
I hope that you will continue to post.