Diagnosed with DIPNECH yesterday!

Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your surgery date. I have DIPNECH and lung NETs with 50+ tumors scattered across both lungs. I was misdiagnosed for 12 years after the nodules were first spotted because no one at my medical center system had ever heard of DIPNECH. The NETs team at a nearby teaching hospital was familiar with it. I had the largest tumor 2.6 cm destroyed with microwave ablation. They expect to do more ablations in the future as tumors grow (slowly) but not remove lobes since I have so many tumors and need to preserve lung tissue. I also have been taking octreotide injections every 28 days for 4 years that have been life changing by stopping my 30 year chronic cough, mucus and improved shortness of breath. I have no doubt my treatment plan would have been much different without an experienced NETs team. Experience matters! Don’t be a guinea pig for someone unfamiliar. DIPNECH is very rare.

My NETs team an hour away coordinates with my local oncologist so I have my injections and labs done right by my home and don’t have to commute. I now meet with my NETs team using virtual visits. So convenient. You’re going to live a long time so make sure you can breathe. My NETs was diagnosed with a needle biopsy thru my back and into my lung. If your tumors are as slow growing as mine, no rush on that surgery. Plenty of time for a second opinion.

Do you have respiratory symptoms? How many tumors? Both lungs? How big is the largest tumor?

The good news is based on symptoms I’ve had DIPNECH at least 35 years. Mine is considered advanced DIPNECH yet still stage I lung NETs. They will ablate any tumors that get too large (probably 2 cm) or behave differently from the others as those are the ones most likely to metastasize. Most of my tumors are about 1 cm, some a little more. Good luck.

Huntsman Cancer Institute in Salt Lake has a NETs specialist--however I think she specializes in digestive. Might be worth seeing if you can get a consultation. Heloisa Soares, MD (Medical Oncology).
She might also be able to refer. Wishing you well—and glad you finally have a diagnosis. I was referred to Huntsman by my PCP but eventually referred back to University of New Mexico where the NET specialist was trained by Dr. Soares. My NET is in my breast--unusual--and eventually treated as breast cancer. But I thought I'd add in Huntsman, as they have a good reputation and are local to you.

Thank you, Miriam. I have begun conversations with Huntsman as of today. They do not accept my insurance, but I will pay for a few consultations, at least.

Were your tumors malignant which were destroyed with microwave ablation? The one I am scheduled to have removed was biopsied and found to be malignant. A few lymph nodes, along with this tumor, lit up on a recent PET scan. I did contact Huntsman Cancer Hospital today to schedule a second opinion. My insurance isn't accepted there, but I will pay for a few consultations and I will work to find an experienced NET team that is aware of DIPNECH, as you have mentioned. What is involved in ablations? I'm not sure how many tumors I have. I do know all lung lobes are involved. I believe I also have had this undiagnosed DIPNEC for 30 years. Treated for adult-onset Asthma for years without great results, and for the last 3.5 years, I've been incorrectly diagnosed with bronchiectasis. Thank you for your response. Best wishes.