DIPNECH diagnosis. Has anyone had radiation?

Posted by ocean5 @ocean5, Feb 21 10:45pm

Right middle lobectomy in Nov '24 at Mayo Scottsdale. 3 carcinoids removed were all malignant and 1 lymph node involved out of 23 taken. DIPNECH also confirmed.
I still have a .9 carcinoid in other lung. Radiologist at home recommended 5 high dose radiation treatments. I agreed at first and now having second thoughts. Has anyone had radiation in lung with this? I live in Oregon and would love to find a good NET Dr here. Finding someone with experience is difficult! Travel piece has been hard.

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

Teresa, Volunteer Mentor | @hopeful33250 | Feb 23 1:04pm

In reply to @sadragliz "seems to have a lot of people with DIPNECH like me so why doesnt anyone know..." + (show)

Hello @sadragliz and welcome to the NETs support group on Mayo Connect. The reasons why a person gets cancer are probably different for everyone. Often there are genetic factors that predispose you to a particular type of cancer and other times the cause of cancer can not be determined.

As this is your first post, would you share your journey with DIPNECH? For example, how long ago were you diagnosed; what treatments have you had for DIPNECH?

I look forward to hearing from you again.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 23 1:07pm

In reply to @ocean5 "I do not have any symptoms at this point. I so appreciate you taking the time..." + (show)

You're welcome, @ocean5. I hope you can connect with a NET specialist in the future. I look forward to hearing from you again.

jhhaas | @jhhaas | Feb 24 8:29am

I have DIPNECH, also had my right middle lobe removed in October 2023. At this point, I am just being scanned every six months. I do have other tumorlets and nodules in multiple locations on other lobes, but so far everything is stable. I am seeing at Memorial Sloane Kettering. And thankful that my doctor knew about NETS. That said, if it starts progressing, I will try to get a second opinion from another net specialist, especially if they want to start treatment. It can’t hurt. I understand the frustration of so little being known about it. My other local doctors really are not familiar with lung nets and DIPNECH. Research is being done for sure, but there were really very few cases reported worldwide. My doctor at MSK, and others, feel that there are a lot more cases out there that are just not being diagnosed for lack of knowledge and understanding. But because it’s uncommon, it makes me second-guess any medications I take that might be prescribed by other doctors who aren’t aware of how it might impact my DIPNECH. You are your own best advocate, so don’t hesitate to get second opinions and question your doctors when you’re unsure about things. If you haven’t already done, so, there is a Facebook group called Lovable Lungnoids that is very supportive. Also, Living with Rare Lung Disease. There are members in both of those groups that have DIPNECH.

sadragliz | @sadragliz | Feb 24 9:13am

I was diagnosed with DIPNECH in June of last year. I have surgery to remove the tumor from my lung in August of last year. So far I have no other tumors and am being monitored by my oncologist every 3 months.

ocean5 | @ocean5 | Feb 24 11:05am

In reply to @jhhaas "I have DIPNECH, also had my right middle lobe removed in October 2023. At this point,..." + (show)

Thank you for taking the time to respond. I really appreciate it. You inspired me to keep seeking answers. What is name of Dr you are seeing at MSK?

jhhaas | @jhhaas | Feb 24 1:29pm

Dr. Gaetano Rocco. He’s a thoracic surgeon, but he knew all about NETS and DIPNECH. I have asked him if I shouldn’t maybe see an oncologist at MSK and he says it is not needed at this time. The Philadelphia area also has some net specialists that I will consult with if mine begins to progress more, as another opinion. It’s just so reassuring to see somebody that knows what you’re talking about! I have a local pulmonologist just in case, and when I told him what I had, he sort of scratched his head and said I think I have heard of that? Same with my primary doctor. I don’t fault them, and both of them are willing to research if needed. But you just feel like it’s not their specialty so they don’t necessarily look at the big picture. I would definitely see a NET specialist before having surgery. WHEN MY TUMOR WAS FIRST DISCOVERED, INCIDENTALLY, I SAW A PULMONOLOGIST TO PLAN TO DO A BIOPSY. AND THAT MADE ME THINK. MAYBE I SHOULD SEE IF I COULD GET AN APPOINTMENT AT MSK SINCE I AM WITHIN REACH. I AM IN NEW JERSEY AND THEY HAVE TWO FACILITIES THERE, ALTHOUGH THE SURGERIES ARE DONE IN NEW YORK. MSK saw me within 5 days of inquiring! SORRY ABOUT THOSE CAPITAL LETTERS! THEY JUST CHANGED ON THEIR OWN! PLEASE KEEP US POSTED AND BEST WISHES.

kevinmonroemi | @kevinmonroemi | Feb 24 3:26pm

Not sure what type of radiation they want you to have? I had high dose radiation on both sides of my liver and even though it was rough it worked I have been stable for over 2 years now! I had the Y-90 treatment. We do what we need to do when other treatments don’t work

mimi206 | @mimi206 | Mar 4 12:12pm

In reply to @hopeful33250 "Hello @sadragliz and welcome to the NETs support group on Mayo Connect. The reasons why a..." + (show)

I was diagnosed with DIPNECH in November 2024 after a segmental left lung resection for 3 carcinoid tumors. Recovery has been slow and I have developed a persistent dry cough since surgery. Repeat CT scan looks relatively unchanged and no one seems very concerned about this except me. Do others have chronic cough with this?

Teresa, Volunteer Mentor | @hopeful33250 | Mar 4 3:25pm

In reply to @mimi206 "I was diagnosed with DIPNECH in November 2024 after a segmental left lung resection for 3..." + (show)

Hello @mimi206 and welcome to the DIPNECH support group on Mayo Connect, I would like to invite @californiazebra and @jhhaas to discuss this with you as they also have a DIPNECH. diagnosis.

You said that your recovery has been slow. Other than the persistent cough, have you had other issues post-surgery?

Zebra | @californiazebra | Mar 4 7:24pm

In reply to @mimi206 "I was diagnosed with DIPNECH in November 2024 after a segmental left lung resection for 3..." + (show)

Hi @mimi206

I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are not removing them. I did have microwave ablation to destroy the largest 2.6 cm tumor. I had a chronic cough for at least 30 years (miserable for me and those around me) until I started taking octreotide injections 4 years ago. The injection is every 4 weeks and within a few months it tamed my cough. I finally felt like a normal person who could go to movies, church, work meetings, etc. without drawing attention. Ahhhh!

So you didn’t have a cough before surgery? Just after?