Neuroendocrine breast cancer

Posted by trixie1313 @trixie1313, Mon, Feb 18 9:33am

I have just learned that in addition to invasive ductal breast cancer that I also have neuroendocrine cancer which I am told is aggressive. I have already had two lumpectomies with TC chemotherapy and 30 radiation treatments. Am now told that I will require chemo consisting of cisplatin and etoposide with 4 cycles 3 weeks apart and each cycle with 3 days of infusion. This will be followed by 5+ years of aromatase HRT PLUS palbociclib (Ibrance) med. I'm told this is a rare form of breast cancer. Anyone out there experiencing this?

Hi @trixie1313, I'm trying to unpack your diagnosis. Does this mean you have 2 separate type of breast cancer: 1) invasive ductal breast cancer and 2) neuroendocrine cancer in the breast? Or is the ductal breast cancer a neuroendocrine tumor?

@margaret2 also has 2 neuroendocrine tumors: stage 3 ovarian with involvement in the omentum and the other stage 2 breast cancer.

Did you know that we also have a neuroendocrine group on Connect?
– Neuroendocrine Tumors (NETs) https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

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I had 3 tumors in my one breast. At the first lumpectomy, it was invasive ductal and at the second it was invasive ductal and neuroendocrine carcinoma of the breast. I've gone to that site, but don't see any discussions about NETs of breast.

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@trixie1313

I had 3 tumors in my one breast. At the first lumpectomy, it was invasive ductal and at the second it was invasive ductal and neuroendocrine carcinoma of the breast. I've gone to that site, but don't see any discussions about NETs of breast.

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I think you're right, Trixie. I don't think anyone has posted about NETs of the breast yet in the NETs group. They are quite rare.

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Hello @trixie1313

Yes, I agree that breast NETs (as well as gynecological NETs) are rare. While I have had surgeries for three NETs they have been much more typical and located in the digestive tract.

I would certainly encourage you to consult with a NET specialist. Unfortunately, NET specialists are not located in every state. However, even if you have to travel for an initial consult it would probably be very helpful for you. Mayo has some great specialists. Here is a list from the Carcinoid Foundation website for others across the country and also world-wide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Will you post again and let me know how you are doing in treating this type of NET?

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@hopeful33250

Hello @trixie1313

Yes, I agree that breast NETs (as well as gynecological NETs) are rare. While I have had surgeries for three NETs they have been much more typical and located in the digestive tract.

I would certainly encourage you to consult with a NET specialist. Unfortunately, NET specialists are not located in every state. However, even if you have to travel for an initial consult it would probably be very helpful for you. Mayo has some great specialists. Here is a list from the Carcinoid Foundation website for others across the country and also world-wide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Will you post again and let me know how you are doing in treating this type of NET?

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Thank you for that information. I did go also go for a a second opinion at TheSecondOpinion.org in San Francisco which is made up of specialists from Kaiser, Stanford, UCSF, and PMC. The oncologist at my tumor board was from UCSF and the pathologist that confirmed the diagnosis was from Stanford. My next step right now is to have my PET CT scan and then I'll know more. Shall post further following that…hoping that is clear. My CT body scan was, but the oncologist explained that the PET scan is more sensitive than CT. Fingers and toes crossed!

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@trixie1313

Hello Trixie,

I'm assuming that your doctor is talking about the 68 GA Doatate PET. This is the newest and best way to evaluate NETs. Here is some information from a Connect post about this test. Just click on the link, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

Do you have a date scheduled for your PET scan?

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@hopeful33250

@trixie1313

Hello Trixie,

I'm assuming that your doctor is talking about the 68 GA Doatate PET. This is the newest and best way to evaluate NETs. Here is some information from a Connect post about this test. Just click on the link, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

Do you have a date scheduled for your PET scan?

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I had my PET scan as well as MRI brain and am told no tumors are found! My oncologist phoned me today to let me know that our pathologists as well as those in the city where the surgery was performed showed neuroendocrine differentiation of breast and not actual neuroendocrine cancer. She also had pathologist send these out elsewhere for another read and came back the same. So I am being reassured now that this is found rarely in the breast but is not the same as actual NET and will not have to have more chemo. I've been placed on anastrozole AI, will have to have twice-yearly infusions to help with bone loss as I already have osteoporosis, and will also be getting another PET in 6 months to follow up on this. I am SO RELIEVED I don't have to undergo more chemo at this time!

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@trixie1313

I had my PET scan as well as MRI brain and am told no tumors are found! My oncologist phoned me today to let me know that our pathologists as well as those in the city where the surgery was performed showed neuroendocrine differentiation of breast and not actual neuroendocrine cancer. She also had pathologist send these out elsewhere for another read and came back the same. So I am being reassured now that this is found rarely in the breast but is not the same as actual NET and will not have to have more chemo. I've been placed on anastrozole AI, will have to have twice-yearly infusions to help with bone loss as I already have osteoporosis, and will also be getting another PET in 6 months to follow up on this. I am SO RELIEVED I don't have to undergo more chemo at this time!

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So pleased for you, @trixie1313!

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