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Topic: Invasive Ductal Carcinoma with Neuroendocrine differentiation

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Dec 30, 2014 06:52AM

Ellageneve wrote:

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.

Dx 6/2014, IDC, <1cm, Stage I, Grade 2, 0/0 nodes, ER+/PR+, HER2- Dx 6/9/2014, IDC, <1cm, Stage I, Grade 2, ER+/PR+, HER2- Surgery 7/8/2014 Lumpectomy: Left Chemotherapy 9/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 1, 2016 07:37PM poopysheep wrote:

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?

Dx 9/1/2016, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 10/4/2016 Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 2, 2016 01:49PM - edited Jul 30, 2019 11:50AM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 18, 2017 02:37AM Moppitt wrote:

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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May 15, 2019 12:54AM Trixie13 wrote:

@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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Feb 12, 2020 04:55PM AlabamaDee wrote:

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

Primary neuroendocrine breast cancer Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/28/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Mar 12, 2020 11:48AM addysgram wrote:

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,

SKR Dx 2/6/2020, Right, ER+/PR-, HER2- (IHC) Surgery 3/4/2020 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
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Mar 14, 2020 09:21PM AlabamaDee wrote:

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

Primary neuroendocrine breast cancer Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/28/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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May 6, 2020 03:17PM AlabamaDee wrote:

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

Primary neuroendocrine breast cancer Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/28/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)

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