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New Diagnosis: husband's labs are all indicating NET
My husband's labs are all indicating NET. His Chromogranin levels are 2474 and repeated is 1944. PET Scan did not light up. Next week is MGIB Scan. This is all new to us iver the last 6 weeks. Advice, suggestions, prayers are welcome!!!
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Thanks. Just need to get my footing in this new world of NETs. Take good care.
Hi there, fist off.. fellow Wisconsinite.....GoPackGo. back to the NETS. My hubs was diagnosed back in 2019 with it originating in the small intestine and having metastastisized to the liver. I shared his story a few months ago, if you're interested. Finding an Oncologist who preferably specializes in NETS is best. They are Hematology Oncologists. His team is primarily his surgical Oncologist who oddly enough specializes in NETS as was as looping in with his Cardiologist and primary care Dr. We were very fortunate to have them both "drop in our lap" by a simple trip to the ER for what we thought was needed was a GI cocktail for a bleeding ulcer. Turned out he had a blockage and needed emergency surgery. The surgeon on call was his now surgical Oncologist who specializes in NETS. Go figure. We were so fortunate to have a dr who knew what it was before he even did the surgery. All while we were in shock and oblivious to everything around us.
As to some"tools for that toolbox".
1. Find an Oncologist who specializes in NETS. 2. Educate yourself. Read about Neoendrocrine carcinoid tumors. 3. Write down your questions to ask the Dr. And continue to research and ask questions going forward. 4. This is important: Of all the cancers you can get this is probably one if the best ones to have. Meaning, it's generally a slow growing cancer... even if at stage 4. (I say generally to CYA and bc each case is different). My hubs Dr told him...."you won't die FROM cancer but WITH cancer". So let that ease your mind a bit. The biggest thing is knowing how NETS grow and spread and the treatment options. And don't be afraid to ask why your not being treated say the recommended way. Maybe the Dr isn't well versed on NETS... maybe it's your overall health that he's chosen that treatment route. And definitely if you get "that feeling" of "this Dr just doesn't seem to... get it or ... whatever" get a second opinion. My hubs is on his 3rd Oncologist. The first just bc of location but the 2nd he just felt like the Dr just wasn't up on the latest treatment nor did he care to look at other options when my hubs asked about them. You've got a lot to take in but with knowledge at least you know what you're up against. Take a deep breathe... it'll be ok. Good luck and keep us posted on your progress.
Hello, I was diagnosed a year ago with NET in my left lung. I had surgery and lost my left upper lobe but was considered “cured”. Now that I’ve had time to do some research, I’m concerned the cancer could come back, especially since it was 6.9 cm and atypical. I am in Green Bay and am thinking I should find a doctor who specializes in NET. There are none in GB so could private message me the name of your doctor in Milwaukee?
Julie O’Connell
Hola ,cómo está ? Espero que muy bien . Lamento que haya tenido que pasar por eso. Pero también es una alegría que haya salido todo bien.
Después de la operación quirúrgica, usted no hecho controles periódicos? De 3 o 6 meses ?
Si usted se ha hecho controles de rutina y seguimiento le salen negativos, es un gran indicio. De no haber hecho seguimiento luego de resección quirúrgica le sugiero encarecidamente que se ponga con eso.
Quizás sería conveniente que le preguntes tus dudas a un oncólogo en lo posible experto en NETS.
Te mando un saludo y deseo que estés bien .
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Hi,
Thank you so much for this long share. I really appreciate it. Your husband struck gold! I'll keep you posted, fellow Wisconsinite. You wouldn't live in southern Wisconsin, would you? I live near Madison.
Thank you. I'm originally from Kenosha. But currently living in Charleston SC. Good luck. And fed keep us posted.
Yes I’m having CT scans every 6 months for 2 years and then one CT scan once a year for 5 years. I do have an appt with my oncologist Feb 27th but he is not an expert on NETS. There are no experts in Green Bay.
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1 ReactionHi I was sick for a long time until we accidentally discovered it was and net stage 4 grade 1 net, I was placed on landreotide injections. But not Creon, long story short, you need Creon to turn on pancreatic enzymes when you eat since lanreotide blocks it. I found a new Dr who specializes in nets. He immediately placed me on Creon, Xermelo and scheduled me for PRRT. I’m waiting the results from the treatments and scheduled in April for Doatate pet scan with copper to light up the cancer to see what the treatment have done. Getting a team that Dr. that uses a multidisciplinary system means they look at you from many different perspectives and have the knowledge and advice of many professionals to help with our treatment plan. My advice is be your own advocate, find a doctor who specializes in nets, sees many patients not a few a year. Don’t settle. The information is available you have to search it out and having the right team is most important. I hope that makes sense. -Nevin
The NET you had removed in 2008 was that your primary NET? What was the grade and size ? Had it spread at the time ?
Thanks for sharing your journey . Can you tell me about the NET in 2008? Like where was it and the size , grade and stage of the NET. I was diagnosed Jan. 3 2025