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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 would strongly request a PET.
I've had one recently to see if my dipnech tumours have spread outside the lungs and thank goodness they haven't, such a relief, hopefully a PET will give you a good result to ease your mind. Good luck
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2 ReactionsThat’s great to hear. That’s what I like about him in his presentations too. Thanks for your response.
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1 ReactionWe received a 2nd opinion from Dr.Lui in June 24, regarding having back fusion surgery with NET, and we were so pleased with his honest no hold back opinions, that we got his opinion on a liver transplant also a few weeks ago. He speaks to us at our level and there is no middle road opinions for him, he will tell you direct and to the point.
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3 Reactions@mcbyron
How was your experience with Dr. Liu? I’m impressed by him after watching many presentations. If I ever feel I need a second opinion on my lung NETs, I would consider him for that. What type of NETs did you see him for?
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1 ReactionHi, I see this post is from almost a year ago. I'm curious what you decided to do. I'm in Denver and have been to see Dr. Liu. Did you find more nets anywhere? Any imaging or tests that was most helpful? Hope you are well.
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1 ReactionI also have a NET in left breast, with similar treatment to yours. It was hard to get a diagnosis. I had 4 pathology reports with 3 different opinions--my oncologist and I have both decided to go with Mayo's opinion. It is very frustrating, because as you say, treated as "ordinary" but there are very few studies or outcomes. I can really relate to where you are at with this rare cancer--and wishing the best for both of us!
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3 ReactionsI was diagnosed with NET primary in Left Breast two years ago. I had lumpectomy and 20 radiation treatments. Genetic testing showed that Chemo was 50/50 so they decided not to do any. I have been taking Anastrozole since then and told to continue for 5 years, maybe 10. I had a PET done at dx but no one has suggested another. I now have itch paths on that breast and some pain in back right side which I have mentioned to Dr but nothing to do. Hoping for the best. No one acts like this is any different than treating regular BC. I have moved to another state and have all new doctors. Miss my old one .
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3 ReactionsYou 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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2 ReactionsHi @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?