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Neuroendocrine cells in Breast and Lungs DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 16 11:26pm | Replies (35)
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@californiazebra

Hi @mir123

Thanks for sharing your info. I understand there is little historical info to go on, much like the rare DIPNECH, but I'm curious why the oncologists wouldn't think the typical treatments used on NETs in other areas wouldn't work for a breast NET. Maybe even a combination of both? I'm taking Kisqali and Letrozole for my common breast cancer and octreotide for my lung NETs/DIPNECH and I can tolerate both treatments together. I often wonder if the treatment for one may inadvertently be helping the other. Wouldn't that be great?!

I do remember you said before your NET is very aggressive so what about the NET treatment for other aggressive NETs? Did you ever have a DOTATATE PET scan? Do you have somatostatin receptors? I wonder about PRRT for you? I'm sure you've researched it all, asked it all, etc. but it sure seems like there could be some NET specific treatment for you. Why not Kisqali or is the genetic makeup of your NET such that they don't think that will work? I'm sure you must be frustrated. I'm frustrated for you just listening to your story and don't want you or the oncologists to give up hope. It will be interesting to hear the thoughts from the @josey1 multi-disciplinary team.

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Replies to "Hi @mir123 Thanks for sharing your info. I understand there is little historical info to go..."
Miriam, Volunteer Mentor | @mir123 | Aug 8, 2023

Thank you--you are knowledgeable. The NET specialist I consulted at UNM said the beast cancer was moving "too quickly" to treat with any NET drugs, and so said no. In Utah the specialist refused to see me because of the location of the tumor--my breast. NYU implied the same. Basically I understand that a NET specialist does not have to accept a patient, and won't if you don't fit into their protocols. Basically I have been rejected by NET centers as if I did not have it. Which appears to be the thinking: I do not have NETs, I have breast cancer. There does not seem to be a doctor anywhere who will treat it differently. I'm no longer upset by this, and have pretty much accepted the situation. The only boundary I've been able to have is in breast cancer world, where I have turned down chemotherapy, additional biopsies, additional surgeries, and longer courses of chemo therapy because I have no proof or statistics that any of it will work on a NET. I don't even have anecdotal evidence. It has been almost laughable. Each doctor admits they have never seen it. Then announces that their approach will work perfectly. Then says I'll probably be dead in 1-2 years. My husband and I got to to the point where we had to not look at each other to not burst into laughter!
Thanks for your interest and thoughts--very much appreciated. I've had a lumpectomy, 3 weeks radiation, and am on an A1. I'm a year in, and currently doing well, so enjoying things when I can.

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