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PNET removed 2 years ago: Can it come back at another site?
Hi ..i did distal pancréatectomy with splectomy since 2 years..it was Pnet grade 2 ..last year my MRI was clean..now since 2 week minimum i feel dizzi stomach pain and tachycardia with too much bowel mouvement..has anyone experienced same symptoms..my Mri is next month..i did chromogranin and im waiting for the results
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Linda, Yes, I was also getting MRI’s every year and GA 68 Dotatate nuclear scans every 3 years. But now I am 18 years post op. My surgery was in August 2007. The tumors that are currently in there haven’t grown even a millimeter since 2017. Unfortunately Dr Norton retired about 5 years ago. My current doctor is George Poultsides. He was Dr. Norton’s surgery partner and knows what he’s doing. I personally am not afraid of these tumors anymore. Dr. Norton told me I don’t have to worry about metastatis until the tumors reach 2cm. I believe mine are well differentiated as many NET’s are. They did say to call them any time if I have symptoms. If I was nervous or terrified I have no doubt that they would scan me every year if I wanted it. Stress and cortisol weaken the body so I keep this in mind at all times and just enjoy every day I have. Helping other patients is extremely rewarding and I am here for anyone who wants to discuss it further. In my opinion, HOPE makes a huge difference and is helpful to the immune system. There’s a book called Molecules of Emotion written by a former NIH researcher that proves this theory.
Good for you! Got to stay on top of it!
Absolutely. You have to be your own advocate.
Thats wonderful to hear another story of such longevity. Now Dr Norton's approach makes sense. Im so happy for you.
My husband's surgery was 17 years ago. Its so nice to hear stories like yours
Linda, Congratulations to you and your husband! How wonderful that he is at 17 years! I have even better news, my mother had her first pancreatic surgery in 1993. She had a second surgery in 2005. Her first surgery was done by Dr. Norton as well and currently she is still alive and 32 years post op! Dr. Norton is definitely a miracle maker! I will always be grateful for his expertise and commitment to this field. I don’t know of a more important job than his. I really miss him.
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1 ReactionI had the very same surgery at Stanford in 2007. They are unlikely to return in another site unless there has been evidence of the cancer in the lymph nodes. However the same tumors can return in the pancreas 10 years post op. I currently have 2 tumors in the remaining pancreas that are not growing. Unlikely to spread before they reach 2cm. Hope this helps. Keep up with your scans and you can live a long life!
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1 ReactionWow!!! That is so wonderful to hear! That is the longest I have heard of. It's so nich for long term survivors to post on these boards to give others hope. It took me a long time to realize that long term patients and survivors aren't as active on these boards because they've done so well and have moved on. As a result, we tend to hear more of the short term stories.
Thank you amd co grats to your pioneering Mom!
Thank you so much! It’s my pleasure to help others have HOPE because hope is sometimes all cancer patients have. And it really does help the body heal in so many ways! I hope you and your husband look into The Seena Magowitz Foundation so I can meet you both in person someday. All survivors are welcome and the CEO, Roger Magowitz reads everyone’s story and personally welcomes you.