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Neuroendocrine cells in Breast and Lungs DIPNECH
I was diagnosed with DIPNECH at National Jewish Health 3/23. Two months later, I had a lumpectomy on my breast. The pathology came back with 2 cancers, an additional neuroendocrine cancer in my breast that did not show up on mammogram. Only 2-5% of all breast cancers are neuroendocrine.
I've been on ocreotide for three months for the neuroendocrine cancer in my lungs DIPNECH. I also have bronchiectasis and MAC and I'm on Azithromycin & Ethambutol.
Stanford's thoracic & breast teams are deciding on what to do about chemo and radiation.
I have had to be my own advocate in this process after 17 yrs. of coughing and finally my refusal to accept nothing is wrong. Colorado almost killed me but the DIPNECH diagnosis from National Jewish Health kicked the doctors into first gear.
I've been researching and asking questions but this is getting very complicated. So far, I've pushed for a PET/DOTA scan to see if there are NEC/NETS anywhere else in my body. Since NEC/NETs usually start in the stomach, small intestines and pancreas, it worries me that I've had itching and a rash on my stomach for about 7 yrs., and I get stomach cramps with intense pain in my intestines. I don't know what's in my head or body these days. Nothing would surprise me.
The NEC/NETs sites stress the importance of finding what and where this began because the treatments have become specific for different types of NETs. Is anyone out there knowledgable or has experience with any of this: DIPNECH, NEBC (breast carcinoid), NEC/NETs that I can talk to. I'm worried they're just going to prescribe chemo and radiation for my breast when they don't know what effect that would have on the ocreodite injections or damage to my lungs. I'm just learning along the way as it seems are my doctors. There's a new result and decision every day. It now just seems like the breast oncologist is making the decision on chemo and radiation without discussing this with me because I would say, take the breast and avoid the risk of radiation. I know they want me to start therapy soon but I want that PET/DOTO first to get the whole picture, do you blame me?
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@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!
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4 ReactionsThank 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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4 ReactionsHi @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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3 ReactionsEveryone 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.
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6 ReactionsHi @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
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