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Already on oxygen - diagnosed with DIPNECH: What happens next?
Neuroendocrine Tumors (NETs) | Last Active: Feb 4 6:28pm | Replies (23)Comment receiving replies
May I refer to you as California? Thank you for your input. My first lobectomy was done because I had numerous nodules/ tumours but one was 2cm×1.9cm and apparently needed to be removed. Recovery was about 8 weeks and afterwards i was a little more short of breath.The 2nd op last Oct was because again numerous nodules but one larger one that was close to the heart wall needed to be removed so again the whole lobe was removed, unfortunately I had complications a day after this op and was back in surgery for another op, this has left me quite short of breath even tho I am still doing the breathing exercises and yes this time it's been a painful and long recovery, I had setbacks after I came home such as a virus that caused such a lot of added coughing, today I find out what they want to do with this 3rd lobe, but I'm reluctant to have more surgery as I'm still recovering and yes veryshort of breath at times. Hope you are OK, do you have dipnech??
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@gprior
Thank you for the response. You’ve been through a lot. I’m sorry to hear of complications, pain and breathing issues. Being short of breath when resting is a terrible feeling. Did the biopsy of that largest tumor indicate malignancy (NETs) or do they think they are all benign?
Yes, I have DIPNECH and lung NETs (typical carcinoids). 50+ nodules were first discovered in 2008 but my respiratory symptoms indicate I’ve had this for at least 35 years. Very slow growing. Most are a little under or over 1 cm. They don’t give me exact measurements anymore. They just watch for any going rogue. In 2021 I had the largest tumor 2.6 cm destroyed with microwave ablation. I believe if I had stayed with my breast oncologist and his local thoracic surgeon they likely would have wanted to remove that lobe. Luckily I went to a NETs multidisciplinary team who recommended ablation given every lobe is full of tumors. Can’t remove all the tumors or lobes. I don’t want to remove any lobes. I did have a partially collapsed lung after both the ablation and the initial biopsy so I can empathize with what you’ve gone through. Normally I have a CT scan every 6 months but 3 months ago they found either new tumors or debris trapped in the bottom of one lung due to a blockage caused by other tumors. Just had a scan after 3 months and no changes. Will scan again in 3-4 months to monitor the situation. My tumors are still confined to my lungs after all these years.
I’ve taken monthly octreotide injections for 4 years now. Life changing getting rid of the chronic cough for 30+ years, reduced mucus and helped shortness of breath upon exertion. It also slows tumor growth. It’s important to see specialists experienced in our specific disorders.
Good luck at your appointment. Please keep us posted. Zebra