Already on oxygen - diagnosed with DIPNECH: What happens next?

Thank you for the info, I will definitely look into it. I've had 2 lobectomys and the lower lobe is being assessed as it has a tumour also. I can't see myself having any more surgery as I'm still recovering from my last one in Oct. Thanks again

My next scan will likely be in May. I haven’t scheduled it yet.

Hello @californiazebra

I am sorry to hear of the changes in your CT scan. I am glad to hear that there have been no significant changes in your symptoms. Please keep me posted on how you are doing. When will you have your next scan?

Hello @gprior,

I understand your interest in reading about how others have treated DIPNECH. You mentioned that In Australia there are not many medical people who have heard of this. Here is a link to the Carcinoid Cancer Foundation website with a list of NET specialists throughout the world. Here is a link to that list.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
After listing U.S. specialists, there is an international listing of doctors. One doctor does appear under Australia,
Australian NET Doctors (Oncology, Surgery, Nuclear Medicine)
J. Harvey Turner, MD, FRACP (Interventional Radiology)

Perhaps a second opinion might help you feel more comfortable with your current treatment Have you considered a consultation to see if your current treatment might be augmented in some way?

I’ve had my first significant change recently. 3 months ago it looked like I had a few new tumors in my lower lung, but they also saw 2 of my DIPNECH/NETs tumors appear to be blocking that area so it may just be trapped mucus. I just had another CT scan after 3 months instead of 6. Looks stable but not improved as hoped. They are still leaning toward trapped mucus but no way to be sure based on the CT. I’ll have the next CT scan in 3-4 months to monitor any changes. No significant change in symptoms or signs of infection. I am concerned with 50+ tumors that more areas could become blocked over time.

I too appreciate being able to read of people's experiences, I live in Australia and I have had 2 lobectomys , one in 2018 after which I was diagnosed with dipnech, the other op last year. I have only been offered surgery and not any other treatment possibly because many medical people haven't even heard of dipnech.
My years of shortness of breath was always believed to be from my atrial fibulation but not so.
I now feel I was too hasty in having surgery especially last years.
Please get as much information and testing before having surgery. Take care

So far, my MSK Dr says no treatment needed since there has been no notable change yet. But I’m acutely aware that could change every time I get a scan. I will just see how it goes. As long as I am feeling good and there is no change. I don’t see the need for a second opinion, but I am within reach of another net specialist, and if anything changes, I believe I would get another opinion. My shortness of breath doesn’t slow me down too much, I’m still fairly active, and able to take long walks and do dog sitting in my retirement. I just can’t go real fast or do a lot of climbing, stairs or hills, which is fine with me. Ha ha. Honestly, I’ve had that condition for a pretty long time, and I am kind of relieved to know the cause. Prior to diagnosis, every doctor would give me inhalers or tell me to get in better condition through exercise. Which I do still try to do, but at least I know it’s not just because I’m out of shape. Lol. That said, I am grateful to know that there are potential options for treatment out there. I’m just sorry you’re not getting more relief from them. I’m guessing it must depend on where all the little bumps and tumors are located, if it starts causing breathing issues. I don’t know, no one seems to know. So it’s nice to have this place to chat. Please keep us posted how you’re doing

Hello @jhhaas,

I appreciate you sharing your DIPNECH experience with @jan355. It does help to hear from others who share the same cancer journey, especially when it is rare. Having a rare, little-known, type of cancer can create a sense of aloneness. You must be happy that your condition has remained stable, @jhhaascrea

Outside of the surgery, and allergy treatments, have you had any other NETS treatments, such as monthly injections, etc.?

So sorry to hear about all your issues. I have DIPNECH also, dx’d after my RML lobectomy in 10/2023. A malignant lung tumor was discovered incidentally during a CT scan of my heart, then PET scan. Thankful I went to Memorial Sloan Kettering for my biopsy and subsequent surgery. Pathology showed typical “carcinoid”, and scans had shown other bumps and tumorlets (Nets) throughout lungs, hence DIPNECH diagnosis. I’m very thankful I have minimal symptoms, but like others have mentioned, I had a history of shortness of breath on exertion/inclines for a while, and had some bad chest infections that took months to clear up. Ultimately, I was tested for allergies, and put on allergy shots and given inhalers that I never really used. I don’t have asthma so they went unused. Now I am on Fasenra which is known to help eosinophilic asthma, but also allergies. I don’t notice much difference, except that since I’ve been on allergy shots, I have not been sick with a cold or any kind of major cough, which I find amazing, especially since this included the pandemic years. But now that I have the.DIPNECH diagnosis, I understand why my shortness of breath on exertion did not really improve with the lobectomy. Thankfully my symptoms are not severe at this point. I’m 75, fyi. I’m so sorry you have to deal with these symptoms and wish you well. It’s just nice to touch base with other people that have DIPNECH. No one I know has much experience with it, including my PCP and pulmonologist, I have to tell all my different doctors what it is, except of course my MSK doc. At this time, he says I need no treatment, but I do get scanned every six months. So far it has remained stable. Again, best wishes to you.

Jan, sorry to hear about all of your health challenges. Sometimes DIPNECH is misdiagnosed as asthma or COPD early on, but reading your history it sounds like you may have both and COPD may be causing your issues as much or more than the DIPNECH. Great that Mayo handled the biopsy. Will you see a Mayo NETs specialist next for further evaluation and possibly a revised treatment plan? If Octreotide could result in some respiratory improvement, it might be worth considering. Please keep us posted.