Anyone have neuroendocrine tumor (NETs) of the breast?

So glad to hear I'm not the only one with Primary NET Cancer in the Breast., since it is so rare.
I was diagnosed the beginning of August this year. I had 4 sessions (12 treatment days) of chemo with immunotherapy. Even though I had - always have had - a mammogram every year on schedule, this tumor developed to stage 4 in just a year. Plus, a PET scan and subsequent biopsy showed NET cancer in my scapula and thigh. My latest PET scan showed the chemo working -- no sign of the cancer and the primary tumor had shrunk by 50%. Now my doc and I will decide if a lumpectomy is next. If so, and the lab detects only cancer cells in that tumor, then I'll have radiation at my thigh and scapula. I am currently also being infused with an immunotherapy drug every 3 weeks.

i am so glad I finally found this information! I was diagnosed with Primary NET Breast Cancer a little over year ago. I am told that is treated like regular Breast Cancer. I had a lumpectomy and 20 Radiation treatment. The Oncotype test showed that Chemo wouldn't be very helpful so didn't have to do that. Having Mammos every 6 months now and taking AI for 5-10 years. So far not too bad. Issues with one knee pain but had some of that prior to diagnosis. Still a lot of itching but PET Scan when diagnosed didn't show it any where else. They say I am cancer free currently. Cross fingers.

@lcbrazen100
I just stopped my AI this last July after 5 years...doctor wanted me to go for 7, but I just had had enough. After 3 months, I feel so much better - my hair has stopped falling out, I can think again, and the aches and pains have diminished. Because of the NET, it was advised that I do chemo that is used for oat cell ca of the lung. My case was presented at 3 different Tumor Boards, one of which suggested not doing that due to the horrific side effects. They do continue with every 6 month PET scans to keep track and I'm fine with that. As we all know, there is not a lot of information on NET of the breast. I'm fine with my decision and will just see how it goes. In the meantime, I'm enjoying each day as it comes.

@lcbrazen100
I just stopped my AI this last July after 5 years...doctor wanted me to go for 7, but I just had had enough. After 3 months, I feel so much better - my hair has stopped falling out, I can think again, and the aches and pains have diminished. Because of the NET, it was advised that I do chemo that is used for oat cell ca of the lung. My case was presented at 3 different Tumor Boards, one of which suggested not doing that due to the horrific side effects. They do continue with every 6 month PET scans to keep track and I'm fine with that. As we all know, there is not a lot of information on NET of the breast. I'm fine with my decision and will just see how it goes. In the meantime, I'm enjoying each day as it comes.

Hi, I have neuroendocrine breast cancer, lumpectomy, clean margin, no lymph activity. Nobody I’ve seen has treated this cancer. They want to do an extra week of radiation. I’m speaking with someone at UCSF Tuesday. Hopefully she’s seen this. What should I ask and should I be adding chemo because of NET? So little information, I hate this. Thank you. Pam

Hi, I have neuroendocrine breast cancer, lumpectomy, clean margin, no lymph activity. Nobody I’ve seen has treated this cancer. They want to do an extra week of radiation. I’m speaking with someone at UCSF Tuesday. Hopefully she’s seen this. What should I ask and should I be adding chemo because of NET? So little information, I hate this. Thank you. Pam

I'm sorry you have this rare cancer, as do I. No doctor I encountered had ever seen it clinically. I was told it is treated as "ordinary breast cancer," so I expect yours will be treated according to its grade (how fast moving), stage, and other attributes, such as estrogen positivity etc. Based on this, the oncologist will suggest a course of treatment. Stay in touch and tell us how you are doing. Chemo was highly recommended to me, but in my case it had a low success rate and a high chance of severe damage to vital organs. Also, I have kidney disease, and nephrologist would not sign off on about half of the suggested drugs. Try not to worry too much, if possible, and do bring a trusted friend, spouse, family member to your appointments. Slow down as needed--a few days to consider, a second opinion. Often doctors will really try and rush you, but a small delay for reflection does no harm. Thinking of you.

pamelasantacruz
The only reason I had 30 radiation treatments was because I had lymph node involvement with 1 of the cancerous lymph nodes breaking through into the lymphatic system. Due to the neuroendocrine findings, I was advised by one group to have chemo used in lung cancer patients which is very toxic. Following that, my case was reviewed by three Tumor Boards and my oncologist then advised against the chemo at that point because of all the side effects. I had already had TC chemo for my first diagnosis of invasive ductal cancer (IDC), followed by the second surgery cleaning out the first IDC as the first didn't have wide enough margins and then removing the second tumor (neuroendocrine) as well as partial mastectomies. Thesecondopinion.org (in San Francisco that includes UCSF, Kaiser, Presbyterian Hospital, Stanford specialists) was the group that advised the lung cancer protocol and the three Tumor Boards that advised against were Kaiser Santa Rosa, San Francisco, and Oakland. It has been almost 6 years now and "fingers crossed," no more cancer. However, I do have 6-month to yearly PET scans as well as yearly 3-D mammograms. You need to look into thoroughly what effects will be imparted by the radiation therapy as well. Since you would be the one receiving the treatments, it is going to be your final decision. I do not regret mine. Please let me know how you do. I'll be praying for you.