Duodenum NET: blood tests stable/CT scan clear but symptoms persist

Your life matters. All of our lives matter. 😊 I am 63, and still remember a time or two in my youth when pediatricians made house calls! lol! The medical industry has changed so much. And while some changes are wonderful, I know I long for the slower days of my youth when I felt a personal, genuine and trusting relationship with my physicians. Time constraints make it harder and harder for the best of medical professionals to devote as much individual attention to us as we all might wish. I think our generation is learning we must strongly advocate for ourselves, and command attention if we must! 😊

My doctor and the entire team at Mayo Clinic has treated me like gold. They genuinely care, listen, offer support and guidance, take their time without rushing you, and are open to hearing out and responding to patients’ questions, concerns and needs.

I strongly urge you to do a Mayo Clinic consult. I have Stage Four NET cancer, and my blood work looks deceptively good. But proper scans and additional work-up’s show my cancer has metastasized. The symptoms you described can be caused by so many conditions - but my cancer causes similar symptoms to what you describe. Please get additional tests just to be crystal clear.

I think your note resonated with me because as we get older, many of us do find ourselves feeling alone. I lost my husband of 33 years and many of my extended family have died. It’s not easy dealing with serious symptoms, particularly when some of us are alone. (My husband would have been bringing me a bowl of homemade chicken soup.)

We NET and other patients must stick together. You are not alone. We understand and we’re here for you! Please keep us posted.

Karen from Florida

@kgrear Thank you for your response, it really touched me. I live South of Boston and am a patient at a well known medical facility but not specializing in NETs. I did all of my research online Mayo Clinic - the best - and NIH. My gastro advocated for a PET scan which my Onco declined. I had CT scan shortly before endoscopy performed (which found & remover NET) - the CT scan didn't find NET & I reminded Onco of that every visit. I just wanted to know if someone else had been thru a similar situation. This is a slow growing cancer until it isn't. Your response to me is spot on - You articulate your experiences and thoughts very well. I have been proactive in my care but as you say, the medical industry is very different today. Thank you for the inspiration, & I feel renewed knowing I am not alone. I wish you the best in your treatment and in being your own caregiver.

@pippa05
Thank you so much for your sweet note. Your posted touched me, as I have often struggled with the same issues. It is so good to connect with you. I wish you good health and happiness. It sounds like you’re taking excellent, proactive care of yourself. I hope we will talk again soon! 😊

Karen

Familiar? Omg..absolutely...I'm on my 3rd opinion and 2nd multidisciplinary center. I have to request scans and bloodwork and get told that that's a good idea from the doctors. Facial flushing after they claim they removed it all. Since 2021 i have been on this ride. Carcinoid syndrome (Facial flushing) is serotonin secreting into your bloodstream. Carcinoid syndrome happens when neuroendocrine tumors are present and have metastasis. Stay strong . 🙏