Neuroendocrine cells in Breast and Lungs DIPNECH
I was diagnosed with DIPNECH at National Jewish Health 3/23. Two months later, I had a lumpectomy on my breast. The pathology came back with 2 cancers, an additional neuroendocrine cancer in my breast that did not show up on mammogram. Only 2-5% of all breast cancers are neuroendocrine.
I've been on ocreotide for three months for the neuroendocrine cancer in my lungs DIPNECH. I also have bronchiectasis and MAC and I'm on Azithromycin & Ethambutol.
Stanford's thoracic & breast teams are deciding on what to do about chemo and radiation.
I have had to be my own advocate in this process after 17 yrs. of coughing and finally my refusal to accept nothing is wrong. Colorado almost killed me but the DIPNECH diagnosis from National Jewish Health kicked the doctors into first gear.
I've been researching and asking questions but this is getting very complicated. So far, I've pushed for a PET/DOTA scan to see if there are NEC/NETS anywhere else in my body. Since NEC/NETs usually start in the stomach, small intestines and pancreas, it worries me that I've had itching and a rash on my stomach for about 7 yrs., and I get stomach cramps with intense pain in my intestines. I don't know what's in my head or body these days. Nothing would surprise me.
The NEC/NETs sites stress the importance of finding what and where this began because the treatments have become specific for different types of NETs. Is anyone out there knowledgable or has experience with any of this: DIPNECH, NEBC (breast carcinoid), NEC/NETs that I can talk to. I'm worried they're just going to prescribe chemo and radiation for my breast when they don't know what effect that would have on the ocreodite injections or damage to my lungs. I'm just learning along the way as it seems are my doctors. There's a new result and decision every day. It now just seems like the breast oncologist is making the decision on chemo and radiation without discussing this with me because I would say, take the breast and avoid the risk of radiation. I know they want me to start therapy soon but I want that PET/DOTO first to get the whole picture, do you blame me?