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Neuroendocrine cells in Breast and Lungs DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Jul 17 10:06am | Replies (30)Comment receiving replies
Everyone I consulted with--from UNM to NYU--said the only treatment for NET in breast is the usual regime for "ordinary breast cancer." However, the one study I found showed outcomes for this were not good. I have had to be wary and proactive with treatment, because there is close to zero info on, for example, if chemo can affect a NET in breast. My oncologist has given me 1-2 years to live (as of last October). I had a lumpectomy, 3 weeks radiation, and am on AI. My choices have been a combo of guess work/gambling and personal preference. I wish you all the best with this--and look forward to anything you discover.
Replies to "Everyone I consulted with--from UNM to NYU--said the only treatment for NET in breast is the..."
mir123
I was advised by thesecondopinion.org to be treated for my NET of the breast with chemo used for lung cancer, but that it is a stronger chemo that would probably result in peripheral neuropathy. Then my medical facility presented my case to the Tumor Board and they advised not to have that but to proceed with regular chemo, radiation, and AIs. The chemo and radiation (30 treatments) were concluded 5 years ago and I also did 5 years of AIs. I was advised to continue 2 more years on AI (exemestane) but chose to go off of these because of all the side effects. I will be getting yearly PET scans and, so far, so good as far as the cancer goes. I've also had bronchiectasis with atelectasis 6 years ago with a few odd findings on lungs in PET scan, but again am doing fairly decently with that as long as I keep up with nebulizer, The Vest, and a special inhaler. Maybe one of these days, the professionals and researchers will actually do more studies on our breast cancer people with NET. Until then, we just need to keep on keeping on. All the best to everyone.
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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.