Invasive Ductal Carcinoma with Neuroendocrine differentiation

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Ellageneve
Ellageneve Member Posts: 4
edited November 2020 in Mixed Type Breast Cancer

I was diagnosed with Invasive Ductal Carcinoma with neuroendocrine differentiation in July 2014. Is there any one out there with this diagnosis? Little is known about it, as few of these cases have been diagnosed. I am getting my last chemo treatment today. I am frightened that it may come back somewhere else in my body, and if it does will I know before it has spread. I would very much like to hear from anyone who has information. I live in Utah.

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  • poopysheep
    poopysheep Member Posts: 40
    edited November 2016

    Hi... not sure if you're still on these forums, but I have an IDC NOS also with neuroendocrine differentiation. I haven't had a meeting yet with my oncologist - it's just on my pathology report. I'm also stage 1/grade one but triple positive.

    how are you doing?

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2019

    Hi poopysheep:

    You raise a good question about grade 1 and HER2+ status. Does your pathology report indicate 1+, 2+ or 3+ (if HER2 status was determined by IHC) or other information (if determined by FISH)? Also, was the HER2 status determined from a minimally-invasive biopsy specimen or a surgical specimen?

    BarredOwl

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  • Moppitt
    Moppitt Member Posts: 4
    edited September 2017

    I had lobular, ductal, and neuroendocrine back in 2008 locally advanced stage 3 but so close to 4 my Dr could not say for sure not 4. It is all treated as same cancer. Most I can say was diagnosed stage 4 in 2010 still here and have a normal life with treatments.

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  • Trixie13
    Trixie13 Member Posts: 1
    edited May 2019

    @poopysheep

    I was diagnosed with invasive ductal cancer this last 11/18 along with neuroendocrine differentiation after a second lesion was found on MRI in the same breast I had a previously undergone a lumpectomy in 7/18 which showed invasive cancer. I just learned today that the tumor with neuroendocrine cancer is Stage 3 while the first tumor is Stage 2. I was told by my oncologist that I would need to continue on an aromatase inhibitor. I had been on anastrozole but the side effects were quite bad. Oncologist suggested trying Femara and that this would give me 50% chance of survival. I am ER/PR+ and Her2neu negative. Hoping for the best.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2020

    Hopping to get this forum going again with any others with Neuroendocrine feature DX.

    I have had 3 lines of Treatment with continued growth and spreading in 10 month. Now on Afinitor/faslodex/octreotide. Hoping to hit the Neuroendocrine part of the cancer as well as the breast.

    Also looking into a trial at excel diagnostics in Houston for PRRT which targets the Somatistatin receptors. Anyone out there research this?

    Dee

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  • addysgram
    addysgram Member Posts: 7
    edited March 2020

    AlabamaDee- I also have Invasive Breast Cancer of no special type with neuroendocrine differentiation, I just came from my first Medical Oncology appointment where it was suggested I get a second opinion at a larger treatment center. I am calling the facility in Philadelphia where my husband sees a GI Oncologist for neuroendocrine cancer.

    Right now, I can't wrap my head around the fact that we both have neuroendocrine cancer since it is so rare.

    I have been giving my husband Somatuline depot for the past 2 yrs. (It's a deep subcutaneous injection every month) His tumors have not changed - metastasis in his liver- and he is doing well. His Dr in Phila has a PRRT program. I am glad I have done the research and gone to all his appointments. If I learn anything I think you would want to know, I will let get back to you here.

    Good luck and prayers for healing,

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2020

    addysgram

    please let me know what you find out. I’m sorry your hubby has cancer too.

    I went with traditional breast cancer treatments after my original diagnosis.

    I just had the dotatate scan and my tumors lit up. So that means I am SSTR+ and PRRT should be an option now BUT only the PUTNET study NCT04276597 has said they will let in breast cancer. I will know more in April when I visit them.

    FYI- MD Anderson team gave me a gastro consult but every trial there excludes breast. My breast doctor doesn’t know much about novel Neuroendocrine treatments for the breast cancer but went along with my current addition of octreotide.

    I found a doctor at NIH who wanted to see my records but have not heard back yet. I assume covid 19 issues.

    I will keep you informed too. Hoping you find a great doctor who can navigate the system for you. We are rare!

    Dee

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2020

    For anyone watching this thread-

    cross posting because I'm so excited that my local therapy worked and for the first time my systemic therapy Afinitor/Faslodex/Sandostatin, seems to be working and it includes the novel use of sandostatin shots in breast cancer for the Neuroendocrine features

    MY Great news! πŸ™ŒπŸ» RESPONSE AND SHRINKAGE of current liver tumors and they did not light up on PET which means they are not active. These are the ones that had Y-90 and bland embolization. 1 small lung nodule weakly lit up that was seen on previous MRI- we will be watching it.

    Home MO recommends I not pursue the PUT-NET trial at this time a just stay on current medications. So good to be able to say that for the first time! πŸ˜‰We will need labs to watch WBC and ANC, probably weekly.

    Sending scans to MD Anderson and will have video call with her after she reviews them. Their reports are much more detailed than my home clinic. So I am hoping those diffuse small mets that were previously reported on MRI andCT are just plain gone since nothing lit up Or showed beside the one in the lung.

    Next scans in 3 months. Hopefully in TX but we will be smart.

    PRAISE GOD. This is a such a joy to report to you all.

    πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»HAPPY DANCE

    Now COVID has to go so I can see my kids and grandbaby again.

    Dee

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2020

    Cross posting to keep this thread going.

    Neuroendocrine is determined by the Immunohistochemical staining (IHC) that is done at pathology on the tumor. Neuroendocrine (NE) stains for synaptophysin. It is rare in breast cancer and usually an ignored incidental finding when considering treatment.

    The blood test for chromagranin A is a type of tumor marker for NE. Mine tipped at 2000 when the normal high is 140. It is not a reliable marker because it can be affected by many things even position such as lying down or sitting up.

    NE has a special target- somatostatin receptors. There is a Dotatate PET that will confirm if the tumors are SSTR+ I am having another scan on Tuesday to see if the newer tumors have uptake. I had good uptake in my first dotatate PET.

    IT IS FRUSTRATING TO HAVE THIS and not be able to get the SSTR+ treatment because it is breast cancer. I have called center after center to get into the trials only to be turned down. Finally I am getting some traction, one at University of Kentucky and another at MSKCC who expressed willingness to pursue the SSTR+ status with the PRRT targeted drug Lutathera off label. I will have to get insurance or the Pharm company to pay and that is a long process. I am not at "right to try" status since there are many drugs I can try including the CDK 2/4/6 trial. I'm going for that consult Wednesday.

    FYI-My original tumor had 90% Neuroendocrine architecture and 10% breast. The metastatic biopsies confirm Neuroendocrine structure also. This is why I am pursuing traditional Neuroendocrine treatments but I hit a wall when I tell the doctors and clinical trials it is breast. There is no crossover other than Afinitor treats both cancers.

    Prayers that I can get this treatment eventually.

    Dee

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  • addysgram
    addysgram Member Posts: 7
    edited September 2020

    Dee- my surgery (lumpectomy) in March was successful, negative margins and negative lymph nodes. I ended up getting chemo anyway because my Oncotype DX score was 80. Tolerated Cytoxan, had an immediate severe reaction to docetaxal so ended up having a port put in and was switched to Adriamycin along with the Cytoxan for 4 rounds. I was supposed to follow that with 12 weekly rounds of paclitaxal. I thought I was tolerating it well, but after the 4th treatment, I developed pneumonitis from the Taxal. So I stopped chemo. I was told the risk was not worth the potential benefits. Itook letrozole for about 6 weeks while the lung inflammation was treated. I started Radiation 2 weeks ago. I had treatment 11 of 20 this morning. When Radiation is complete, I go back on Letrozole.

    I have asked about the Neuroendocrine part and both my local and consultant MOs say it’s treated the same. My yearly mammogram is due in January. I guess I will know then if the treatment I have had was adequate.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2020

    addysgran
    fantastic that you made it this far with all those SE! You have been through a lot!

    The Neuroendocrine part has become more important to me in the metastatic setting as I continue to progress in breast cancer drugs. I am looking for any way to knock this cancer out!

    Best To you as you continue your treatment.

    Dee

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2020

    clinical trial news for Neuroendocrine breast cancer

    https://clinicaltrials.gov/ct2/show/NCT04276597

    This is one of the first Neuroendocrine focused trials that contains actual verbiage to include the breast.

    I tried to get on the list but they said no because I take IVIG. I may retry again in the future.

    Dee

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