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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?
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I am coughing up blood tinged phlegm every day. This is how it was found. At first they said I had cancer in the lungs. They sent me to a bigger hospital to have a lung biopsy done. The biopsy came back DIPNICH. I have it in both lobes. I have a tumor in each lung. At this time my symptoms are blood tinged phlegm, coughing, shortness of breath and O2 stats down to 93.
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1 ReactionHi @mlbschuler
Just wondering if you had your DOTATATE PET scan yet and how that turned out.
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1 ReactionSure thing!
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2 Reactions@mlbschuler
Great news that you were happy with your visit with Dr. Ramirez and he is doing additional tests. Glad he reassured you it is all very slow growing. I will be interested in your PET scan results which sounds like the DOTATATE scan to identify NETs. I had the DOTATATE Cu64 PET scan 3 years ago, but discovered I do not have somatastatin receptors (SSTRs) so the DOTATATE scans aren't beneficial for me. That was disappointing; however, people without SSTRs still benefit from Octreotide injections as I do so he can still treat your DIPNECH and NETs either way. Please let us know about your scan results. The DIPNECH community is very small so whatever we can learn from each other is great.
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2 ReactionsIt went really well, thank you! It appears that I have DIPNECH and NETs. He is going to get a PET scan scheduled to see if there are any NETs anywhere else. From scans I had done in 2017, when I was in the hospital with the Flue, and not yet diagnosed with DIPNECH, he says DIPNECH is growing very slowly! So, really good news.
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2 ReactionsHi @mlbschuler How was your consult with Robert Ramirez?
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1 ReactionThank you, I will! I really hope he is as amazing as he seems. I too have watched his videos.
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1 Reaction@mlbschuler
I am so excited to hear you are seeing Robert Ramirez! He seems the most interested in DIPNECH of all the NETs specialists. I’ve watched all his online presentations. He would have been my #1 pick if I lived closer. If I ever feel like I need a second opinion on my DIPNECH/lung NETs case, I will be contacting him. I think my case is well managed now though.
Please let us know how your consult with him goes. Yay!
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2 ReactionsI got an appointment with Robert Ramirez at Vanderbilt. I called 2 days ago, and have an appointment on the 26th. I am amazed at how soon this is happening. Now I need to come up with the travel expenses! Really hoping to get some better answers !
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1 Reaction@grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment.
Are you having any symptoms? How was the diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) discovered for you?
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