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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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You are Right about being your own Advocate.
That's how I found out I had DIPNECH.
That's how I found out I have Alpha gal
That's how I found out I recently have 2 blood clots in my lungs
It was ME who asked to be tested for these things.
As for you...Demand the PetScan.
You might not like what you find but it will give you peace of mind.
I would also seek 2nd opinions but only use Specialist from this journey forward.
You owe it to yourself.
I'm also looking for a DIPNECH Specialist.
Have a good day.
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1 ReactionHi @grec
I shared my details earlier in the thread if you want to scroll back. I had a lot of phlegm with my chronic cough. The blood tinged part is likely from the chronic cough irritating your lungs. I remember seeing that on rare occasion but not all the time. My cough and phlegm are so vastly improved they are not even an issue now that I’ve been taking octreotide injections for 3 years. I don’t ever want to stop that treatment as it has been life changing for me. I still get some shortness of breath with activity but much improved. My O2 level is also at 93 in the recliner or bed but about 96 when sitting in a desk chair and even higher when walking. It was down 89 for a few months last year.
How large are your tumors? What treatment did they suggest? I had microwave ablation at UCLA to destroy the 2.6 cm tumor. They will destroy any others that reach 2 cm. I do have lung NETs as well. Please let me know if you have any specific questions for me. My interventional radiologist told me it’s the hundreds or thousands of tiny nodules lining the airways in DIPNECH (too small to show up on scans) that cause the symptoms not the ones we can see on the scans. That’s what Octreotide treats. It also slows the growth of the tumors we can see even though t is already slow growing. Based on symptoms I’ve had this at least 30 years.
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2 ReactionsHello @grec,
I'm sure you have a lot of questions about this new diagnosis.
On Connect, we have several members with DIPNECH. I would like to invite one of those members, @californiazebra, to join you in this discussion so that she can share her own experiences with you.
What type of treatment is being suggested by your medical team?
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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