Neuroendocrine cells in Breast and Lungs DIPNECH

Hi @josey1

I responded to your other post as I have DIPNECH, lung NETs and breast cancer also.
https://connect.mayoclinic.org/discussion/new-dipnech-diagnosis-need-advice-on-doctors/?pg=2#chv4-comment-stream-header
Please feel free to private message me if you want to talk.

Zebra

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.

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.

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.

@mir123 Thanks for sharing. Unbelievable and so frustrating. I’m glad you have your husband to go through this with you. You have a good attitude. So glad you’re still finding joy in life. Some doctors love rare stuff and want to be the one to figure out the mystery so I hope one of those will be revealed to you through this message board. In the meantime, continue to make the most out of every day. I do agree with you on quality of life issues so I don’t say yes to everything doctors throw at me. It’s a balancing act. Hugs to you!

Hello @josey1 and @mir123

I can understand your confusion regarding NETs in the breast. On Connect there is another discussion started by @trixie1313, regarding her journey with NETs in the breast. Here is a link to that discussion.
https://connect.mayoclinic.org/discussion/ned-of-breast/
Will you both post updates as it is convenient for you?

Thanks for thinking of us! Thoughtful of you, and appreciated. Right now I have no symptoms or fatigue, but I've been told by my doctors it is most likely that the tumor will metastasize and spread throughout my body. I'm a year out from diagnosis and my energy and mood are normal for me, even post surgery and post radiation with some low lymphocytes and an AI. Basically it is a strange time with feelings of health, and knowledge of mortality. My family has been amazing. I'm just doing things I enjoy like road trips and live music and not working at all (I was retired but still had work gigs). My situation remains mysterious medically, and to me! Always open to advice and more info.

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.

I was just diagnosed with DIPNECH, what can I expect?

I have that too. I am not taking anything for this at this time. It is scary. I was told it was very slow growing. Mine is in my lungs.