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

Neuroendocrine Tumors (NETs) | Last Active: Feb 4 6:28pm | Replies (23)
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@gprior

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

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Replies to "I too appreciate being able to read of people's experiences, I live in Australia and I..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 28 6:25am

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?

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