Anyone living long-term with DIPNECH on lungs?

Hi @californiazebra
This tumor that was ablated was the only one that the dotatate pet ‘lit’ up and biopsied as a typical carcinoid with bronchoscope. I have many small tumors with the DIPNECH, and the plan going forward is CT to watch those for growth.
Where did you have your ablation? Mine was done at Mayo in Jacksonville.

@tammyv615

Good plan. I had my tumor ablation at UCLA. They have a NETs multidisciplinary team in place as I’m sure Mayo Jacksonville does. I went with UCLA because I was already seeing a local oncologist who is part of the UCLA system for my breast cancer and wanted to stay in the same system for ease. The NETs team orders the octreotide injections but I receive them monthly at my local breast oncology office for convenience. It saves me from a 4 hour round trip to UCLA in traffic. Happy about that.

I am 75 and was diagnosed 6years ago, I had half my right lung removed and yes breathlessness is a problem not just with the lower lung capacity but the dipnech itself. The tumours are mostly slow growing but it depends on position of them, I have one on my heart wall and I now need more surgery as it is increasing in size and is solid. We can live with it as long as we have regular cts and keep an eye on things

I also have the same condition . I am 72 , diagnosed 8 years ago . Two years ago I had part of my right lung removed as well. I have to go for ct and x rays every 6 months and pray for the word STABLE . They tell me I can live a long life with Diptech as it is slow growing. I hope they are right . I can walk 5 miles on a straight road but one flight of stairs and I am breathless . Wishing you well

@gprior
Have you tried octreotide injections for respiratory symptoms? It has been life changing for me. I coughed all day long for 30 years straight! It was miserable. The octreotide stopped that and improved shortness of breath upon exertion. They told me the octreotide may not work forever but I’ve been taking monthly injections for 3.5 years and so far so good. I did not have and lung lobes removed. Blessings to you!

In reply to your having had an ablation of a tumour I hadn't heard of it done let alone being offered in preference to surgery, I am to have more surgery because of the position of one particular tumour , was yours close to other tissues?? Thanks gloria

The injections have not been offered to me as a treatment, I will make enquiries . Thank you for your info.

@gprior Hi Gloria.
Sorry you have a tumor by your heart and need more surgery. No, my tumors are not near anything other than scattered across both lungs. I was told if someone has one tumor they will likely remove the lobe it is in, but since I have over 50 tumors, we can’t remove all my lobes and want to preserve as much healthy lung tissue as possible. That’s why I had microwave ablation. We only did it on the largest tumor because they were worried it might metastasize. We will do others in the future if any suddenly take off from the pack. Are you being treated by a multidisciplinary NETs team?

I have breast cancer too and my local BC oncologist was just going to refer me to a thoracic surgeon until my pulmonologist told me about NETs specialists. My treatment would have likely been very different without that good advice. Experience with NETs counts. My NETs team is an hour away. Blessings to you.

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon and lung specialist and the team they confer with eg oncologist, Radiology and pathology. I guess we put our faith in the drs we trust,. My shortness of breath has increased over many years , because of heart problems my difficult breathing was always thought to be because of that but after ,it was found I had dipnech 6 years ago when the half lung was sent to pathology hence the shortness of breath. Obviously I'd had dipnech for many years. Thank you again

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1 malignant tumor and a few smaller ones. But there are multiple other small lumps and tumorlets on other lobes. Because the malignant one tested as a typical carcinoid tumor, and I have no major problems, I’m not receiving any treatments at this point, just scans every 6 mos. I am only 1 yr post op and will have my 2nd scan next month. I do not have a net specialist, although I did have my surgery at MSK, New York. After this next scan, I may try to get a second opinion in Philly to be sure they concur. So far my main symptoms are shortness of breath on exertion, such as stairs, hills, or walking too fast. I try to walk every day. Forgot to mention I am 75. I do not have the coughing that so many have, but I do often clear my throat from deep inside my lungs. But it’s not really a problem for me. I feel grateful this was even found, because the tumor was incidentally found while I was having a routine heart scan. While it was very disconcerting to realize my lungs have this problem, I’m learning that people can live a long time with it, and there are treatments available if needed. Best wishes to you.