Neuroendocrine cells in Breast and Lungs DIPNECH

Posted by josey1 @josey1, Aug 2, 2023

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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

mlbschuler | @mlbschuler | Jan 26 7:40am

In reply to @mlbschuler "I was just diagnosed with DIPNECH, what can I expect?" + (show)

Yes, in the lungs, pretty scary, but slow growing, hopefully it stays that way! They changed my inhalers and I am to have CT scans twice a year for now.

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 26 9:10am

In reply to @mlbschuler "I was just diagnosed with DIPNECH, what can I expect?" + (show)

Hello @mlbschuler, I moved your discussion and combined it with an existing discussion titled, "Neuroendocrine cells in breast and lungs - DIPNECH" - mayoclinic.org/discussion/neuroendocrine-cells-in-breast-and-lungs-dipnech/.

@californiazebra, @grec and @josey1 have all discussed having DIPNECH as well and may be able to share some of what they have experienced during their journey with the diagnosis.

@mlbschuler, have treatment options been discussed with you, or are you in a wait and watch approach?

Teresa, Volunteer Mentor | @hopeful33250 | Jan 26 10:09am

In reply to @grec "I have that too. I am not taking anything for this at this time. It is..." + (show)

Hello @grec and welcome to the NETs support group on Mayo Connect. It is a good idea for any type of NETs diagnosis to have at least one consultation with a NETs specialist. NETs specialists have specific training and experience in treating this rather rare form of cancer. This is really important.

If you are not able to have an in-person consultation, a virtual appointment is often available. Mayo Clinic has NET specialists at all three of their locations. Here is a link to get appointment information, http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is listing of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatmhttps://connect.mayoclinic.org/interaction/comment/1003915/reactions/listview/ent/find-a-doctor/. How are you feeling now?

@grec, how long ago were you diagnosed with a NET in the lungs? Were you having symptoms at the time or was this an incidental diagnosis?

mlbschuler | @mlbschuler | Jan 26 12:12pm

In reply to @JustinMcClanahan "Hello @mlbschuler, I moved your discussion and combined it with an existing discussion titled, "Neuroendocrine cells..." + (show)

Wait and watch.

Zebra | @californiazebra | Jan 27 6:16pm

In reply to @mlbschuler "Wait and watch." + (show)

@mlbschuler @grec
I have both DIPNECH and lung NETs and yes, it is scary to have tumors in your lungs. I have 50+ visible tumors across both lungs. It took them 12 years to figure out what they were after they were spotted on a CT scan. Lots of incorrect guesses.

What symptoms do you each have? How many tumors? What size? Both lungs?

Yes, DIPNECH is very slow growing and doesn't always turn into NETs, but the respiratory symptoms can be a real quality of life issue. I had chronic coughing all day long, clear mucus, clearing my throat, shortness of breath upon exertion for 30+ years before treatment. Inhalers didn't help my symptoms. It was like having bronchitis for 30 years non-stop. Awful for me and those around me. The octreotide injections I've been taking for 3 years now have been life-changing!

You definitely need to see a NETs team familiar with DIPNECH. My breast cancer oncologist wanted to do watch and wait or have part of my lungs removed because he knew nothing about DIPNECH. My pulmonologist didn't know there was treatment for it, but did tell me to see a NETs specialist so I did. Now I'm treated by a NETs team for my lung NETs and DIPNECH. Most doctors have never heard of DIPNECH, not even lung specialists and radiologists. NETs/DIPNECH experience is important.

My interventional radiologist destroyed the largest tumor in my lung (2.6 cm) through non-surgical microwave ablation and will destroy any others reaching 2 cm. He did that because large ones (if NETs) are the most likely to metastasize. DIPNECH did turn to cancer in my case, but after 35 years of issues they believe it's still stage 1. Amazing. But he said I wouldn't feel any different after tumor destruction (and I didn't), because it's not the tumors we see causing the respiratory issues. He said there are hundreds or thousands of tiny tumors lining my airways that don't show up on the CT scans and those are what cause the issues. The octreotide is stopping those little pacmen from causing trouble and slowing the growth of all tumors large and small. The important thing to remember is even if DIPNECH doesn't turn to NETs, growing benign tumors are still displacing healthy lung tissue and causing serious issues so you want to treat it.

Colleen Young, Connect Director | @colleenyoung | Feb 6 3:38pm

In reply to @grec "I have that too. I am not taking anything for this at this time. It is..." + (show)

@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?

mlbschuler | @mlbschuler | Feb 8 8:11am

I 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 !

Zebra | @californiazebra | Feb 8 4:53pm

In reply to @mlbschuler "I got an appointment with Robert Ramirez at Vanderbilt. I called 2 days ago, and have..." + (show)

@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!