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DIPNECH diagnosis. Has anyone had radiation?
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.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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@ocean5: So sorry you are having this NET lung progression. I just joined a NET support group in Northwest I think can help you. I have also heard good things happening in our world at Swedish Hospital in Seattle. I believe the support group can be reached at pswcarcinoid.org. I hope this helps you get the lung info needed to make best treatment decision. Bette
You definitely need to get a second opinion from a NETs specialist. Other types of lung cancer are not treated the same as lung NETs and DIPNECH so if they are not experienced with NETs then your treatment plan may be off base. Glad someone has given you a NETs contact for your area. Remember in this day and age many specialists are willing to have a video consultation with you so you don’t have to travel. My NETs team coordinates with my local oncologist for my convenience. I also have lung NETs and DIPNECH. Radiation has not been suggested for me. I had microwave ablation to destroy the largest malignant tumor and were just monitoring the other 50 nodules. I’ve been taking octreotide injections for 4 years now to alleviate respiratory symptoms. Best of luck.
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2 ReactionsI have the same. I did have radiation on my left lung, SBRT, on two tumors. It was 5 sessions. Have been taking sandostatin shots every month the past two years. I get scanned every 6 months now and have had no evidence of disease and smaller tumors are stable.
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2 ReactionsHello @ocean5 and welcome to the NETs support group on Mayo Connect. As was mentioned by @californiazebra a second opinion is a wise idea at this point in your NETs journey. Often you can have a virtual consultation if travel is difficult. While you are not located near a Mayo facility, a virtual appointment might be possible. Here is a link with information on how to obtain a consultation at Mayo, http://mayocl.in/1mtmR63.
If, for any reason, an appointment with the Mayo Clinic is not possible, here is a list of doctors throughout the U.S. who are considered NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/, I see that there are several on the west coast, who might be able to offer a virtual consultation.
How are you feeling now? Do you have shortness of breath, chronic cough or other symptoms?
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1 ReactionI do not have any symptoms at this point. I so appreciate you taking the time to send information. I feel as if I’m on an island with no one having experience! I will definitely try again with Mayo virtual but ran into problem with Dr’s not being licensed in the state of Oregon to do a virtual. Also will check out list of Dr’s. Thank you so much!!
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2 Reactionsseems to have a lot of people with DIPNECH like me so why doesnt anyone know the cause?
Thank you so much for information on support group. I would be willing to travel to Seattle because it would be an easy drive. Will check out group website.
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1 ReactionI tried support group but couldn’t get on website.
Hi there! No, I had the middle lobe of my right lung removed surgically in 2019.
I have had 8 sessions of radiation therapy but not for my lung. Cheers, Cathy