Frustrated with the medical establishment
After years of being told I had IBS, I became quite ill Summer 2021 with pain, nausea, bleeding in urine/dia., vomiting. Saw several MDs-"all tests normal" Saw my urologist who advised bleeding was caused by infection -primary's nurse had told me bleeding was normal. I scheduled an endos/colonoscopy with my new GI MD. A week before my procedures, had abdominal CT scan which was normal. After scopes, GI MD sent 19 biopsies to pathologist in Boston who diagnosed Neuroendocrine carcinoma of duodenum – small enough to be removed by endoscopy. Continued to be ill with pain, dia, nausea, fatigue, headaches, sweats went thru tests again – all is "normal" I told my oncologist I wish I felt as well as I appear to be "on paper". I will ask at my next oncology visit for an MRI instead of CT Scan which don't seem to be a definitive means of viewing this type of cancer. I viewed different websites nationwide trying to become knowledgeable in understanding my cancer. Mayo is the best. I never knew that there are certain foods to be avoided, I learned that only the pathologist can diagnose this type of cancer. I am very lucky that through a monitoring process, we can follow for any changes. I have not needed Chem/meds, etc and my heart goes out to all of you brave people that deal with these treatments. Because someone has MD, PHD etc after their names does not mean that your suffering is without cause, you just haven't found the source yet. The internet will not replace your doctors, but will enable you to be a proactive partner with your MD. Over the years I have been thru so many procedures, even surgeries related to my "IBS" and when I finally had a piece of paper that said "neuroendocrine carcinoma" I felt that I finally had proof that I was really ill.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Greetings and Welcome to Mayo Connect. My heart goes out to you for all the procedures, testing and surgeries you have been through only to find that you truly have a Neuroendocrine Carcinoma. You are a brave person and I applaud you for your persistence in seeking answers to your medical conundrum. I have often said that a patient knows their body better than anyone else and when something doesn't feel right, it probably isn't, and you should follow your heart. You have done that, and I count you as proactive, brave and smart! If you do come to Mayo, I highly recommend their care. It is always top notch and patients are free to ask questions and not feel intimidated because they don't know something. I would be happy to share my experience if you like, just let me know. Wishing you all the best in your medical journey. I wish you a better 2023.
Thank you for your comforting words. It has been a discouraging journey and over the years have lost so many social contacts because I need to live my life in close proximity to a bathroom. I've given up outdoor activities, dining out, theater but have, in their stead, discovered a love of reading, music and the computer has opened a world of knowledge and travel via the web to places I could never have explored. I am very lucky to be able to continue to work remotely. Friends and neighbors are always welcome to stop by and I have a house full of pets known as dust bunnies. I have learned to speak up to my doctors, and not be so intimidated. I would be very interested in sharing your experiences, thank you.
I totally agree, a person is the best judge about something going on in their body! I've been on a similar journey, only with an enlarged pituitary and am being to feel like a ping pong ball with my own medical team. A new GP (old one never had any solutions except pills), neurologist, an endocrinologist, and a neurosurgeon!! And I am waiting for an elbow replacement!!! My elbow surgeon is considered to be one of the best in Canada, so that's a relief.
Neuro surgeon doesn't want to take tumor out of pituitary, says it is not the cause of all my pain🤷♀️.
My new GP is finally getting me in to see the med team at a chronic pain clinic to see if that will help as all symptoms may be caused by the horrible pain caused by elbow/ shoulder!! The journey continues!
If I could afford, I would go down to Mayo, but dollar wise, that is out of the question! Canadian health care is a disaster so don't laud our system!!! It is broken!
Hello @pippa05, I would like to join @skkirby and the others who have welcomed you to Connect and offered support and encouragement. As I have also had three surgeries for NETs in the duodenal bulb, I related to your diagnosis.
Information on one of the best scans to find NETs can be found here,
–68 GA Dotatate Positron
This is a sophisticate medical scan that is most effective in finding NETs.
I would also encourage you to find a doctor/oncologist who is a NET specialist. Here is a link to a website that will provide you with a lot of patient resources:
–Carcinoid Cancer Foundation
Have you had surgery yet for the NET that was found?
yes, the small tumor was removed & everything biopsied fine -I am still having GI issues with sweats, cramps, dia for over 1 year. After my initial diagnosis, my oncologist sent me to a renowned cancer hospital in Boston & I don't ever care to go back. I ended up having to take an expensive Uber ride in & out of Boston, since the free transportation service never returned any of my 3 phone calls & I had to wait hours for my procedure, I have GI issues with anxiety, so I had to keep getting disconnected from machines to go running to the restroom – it was a nightmare experience which I don't care to repeat. At age 72, I am going to be very selective about my course of treatment, I know I will be sick from the disease, but I am pretty sure I don't want to be made sicker by the treatment at this stage of my life. Thank you for the websites which I will review. I wish you the best of luck, my prayers are with you.
I am sorry to hear that your follow-up test caused you so much distress, @pippa05 . Did the results of this test show anything to explain your symptoms?
Has your medical team suggested any treatments for the abdominal distress and sweating that you've experienced post-surgery?
No, my team advises that all tests are "normal" . All lab reports, billings, doctors' notes, etc are all posted to my patient portal. Gone are the days of anything sent snail mail, or phone calls with results. Questions can be asked via the portal. I actually learned of my cancer diagnosis via the portal, my first thought was that now I finally have proof that I am sick. My MD called shortly thereafter- she had many conversations with the pathologist & referred to me an oncologist to establish a protocol for the cancer. I am blessed that everything has come back normal. My oncologist said that this type of cancer is very treatable & non-aggressive but no one can tell me why I have these symptoms. I see what other patients are going thru here & I feel guilty about complaining & I count my blessings. Thank you.
While I'm not a medical professional, @pippa05, your symptoms sound like carcinoid syndrome and there are treatments available for those symptoms. If your current oncologist is not willing to help you with these symptoms, it might be good to seek a second opinion. I'm also wondering if you have had blood tests to check for Serotonin levels. As you have access to your test results through the patient portal, check to see if this test has been done.
Here is a link from the Mayo Clinic's website on the topic of Carcinoid Syndrome. After you read about the symptoms, causes and treatments, talk to your doctor about these symptoms as it relates to carcinoid syndrome.
Will you let me know what you learn from this article?
Hi I feel every bite of your trails I traveled almost the same road , misdiagnosed with IBS for years by several gastroenterologist because regardless what they said I knew in my being it was more to it and finally I had Dr. Anderson whom I call my angel 😊 in NC , find I had NET he used a capsule with a camera in it along with a monitor I forget the proper name for it 😊 that was back in 2011 I had a large tumor in my small intestines once I had the surgery all my symptoms were gone , and I was told to have annual Ct going forward last year in June 3 2022 more tumors showed up on my liver and ovaries so my oncologist put me on sandostatin shots to prevent and maybe shrink the ones I have .. God is good I’m doing well thus far , I notice you mentioned asking for cat scan but for Neuroendocrine tumors pet scan are the best the tumors light up when detected , May God continue to bless you Happy New Year !!!