Topic: De Novo Stage IV

Forum: Stage IV/Metastatic Breast Cancer — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jul 5, 2020 01:40PM - edited Jul 5, 2020 01:42PM by kbl

Posted on: Jul 5, 2020 01:40PM - edited Jul 5, 2020 01:42PM by kbl

kbl wrote:

I'm wondering if there is a topic just for de novo Stage IV. I'd like to know how people found out. Did you have symptoms that led you to the doctor for an answer? Was it found out of the blue when you had another issue and how was it found? Are there others like me who have never shown it in your breast but only where it is during Stage IV? Where is yours located?

I'll go first. Mine was found only through endoscopy and biopsy because I had early satiety and weight loss. No other test, including imaging, has shown the cancer, even in my stomach, where it is.

I know I've had trouble finding people here who have it in their stomach, but I'm still interested to know how many of us were de novo at the start.

If there is already a thread about this, please point me in the right direction, and I'll delete this post.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Chemotherapy 9/27/2021 Other
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Oct 15, 2020 12:30AM snow-drop wrote:

ReneV, thanks for the information, sharing your experience and wishes. Best of luck with your treatment. Knowledge is power, I learned a lot here, thanks to KBL for starting it. I feel my confidence is back, so tomorrow is a big day, planning to push the MO for SBRT!!!!

Illimae I am happy for you that the treatment has worked well.

I hope everyone is doing well.

De Novo stage IV Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2-, IHC Radiation Therapy External Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Zoladex (goserelin) Local Metastases Radiation therapy: Bone
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Oct 15, 2020 06:53AM kbl wrote:

It makes me so happy that you’re getting information here and it’s helping. I’m so appreciative that we can all give information and talk about our specific circumstances from the de novo point of view.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Chemotherapy 9/27/2021 Other
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Nov 1, 2020 02:14PM - edited Nov 1, 2020 02:29PM by Tinkerbell107

Just checking in. Hope everyone is doing well. I was catching up on some reading and thought would post to the group.

In reference to the below research article, I need further clarification from others, meaning perhaps I've come to the wrong conclusion or read to deeply into it. If I'm reading this correctly does the study seem to indicate radiation to the regional lymph nodes may reduce seeding/future seeding for metastatis?

Bitencourt A, Saccarelli CR, Morris EA, et al. Regional Lymph Node Involvement Among Patients With De Novo Metastatic Breast Cancer. JAMA Network Open. doi: 10.1001/jamanetworkopen.2020.18790

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2-
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Nov 1, 2020 02:35PM piggy99 wrote:

Hi Tinkerbell,

I think the article is only saying that because most de-novo MBC patients were found to have regional lymph node involvement at MBC diagnosis, it's likely that regional lymph node involvement is a precursor of distant metastases in a substantial proportion of patients. Therefore, the authors conclude, lymph node irradiation (including intramammary nodes) in early stage BC could reduce risk of metastasis. They are basically advocating that radiation to lymph nodes in early stage BC should be done more frequently (possibly even when there is no evidence of node involvement) and more extensively (including intramammary nodes). It is pretty confusing, using observations in de-novo MBC patients to recommend changes in early-stage treatment...

Diagnosed as Stage IV de novo at age 42. Dx 1/23/2018, ILC/IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Hormonal Therapy 1/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 2/8/2018 Ibrance (palbociclib) Hormonal Therapy 3/31/2018 Femara (letrozole)
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Nov 1, 2020 02:50PM Tinkerbell107 wrote:

Piggy99: Thank you for responding. I wasn't clear if this was in reference to early stage BC or newly diagnosed MBC. Unfortunately there are not a lot of articles directed to "De Novo" MBC. So when I read it was like what is this? How does this help us already diagnosed with de novo.

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2-
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Nov 1, 2020 04:52PM kbl wrote:

Hi, Tinkerbell. Thank you for bumping this thread. I was away on vacation and chose to stay off boards while I was gone.

Thank you, Piggy99 for such a thorough explanation.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Chemotherapy 9/27/2021 Other
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Nov 1, 2020 05:44PM Tinkerbell107 wrote:

KBL: Hope you enjoyed your vacation. Need to keep this thread going. We are a minority based on the statistics "6% to 10%" are diagnosed with De Novo. I believe the number is a lot higher based on missed tumors on imaging with early BC. How much higher who knows, but this was almost me (stage 2 to MBC in 2 weeks).. Unfortunately the literature is rather limited. If someone reads a good article, heck even a confusing article like I posted, perhaps we can educate one another on this thread.

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2-
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Nov 1, 2020 06:00PM illimae wrote:

I’m here too. I volunteered to move to a 2nd line treatment combo of Herceptin, Xeloda, Tukysa to better control the brain mets. So far, Xeloda is not my friend but I’m finally getting the right meds for my SE’s (1st 2 anti-nausea meds didn’t work). I feel pretty decent but waiting on Spine MRI results to see if I have lepto mets or if this is my 3rd false alarm. Also, leaving tonight to move to our mountain cabin in west Texas. I’ll post some pics later :)

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2- Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 1, 2020 06:29PM seeq wrote:

I tried to post a few minutes ago and it seems to be lost, so I'll try again.

Hi Tinkerbell, thanks for posting the article, it was interesting - anything they can figure out to help prevent MBC is good -- even if it wouldn't have helped our situation.

Piggy, thanks for the synopsis; it made reviewing the article that much easier.

KBL, I hope you went somewhere fun and spectacularly relaxing.

Illimae, I'm sorry you are having trouble with your tx; hopefully, the new meds will improve you situation. How fun to be moving to a cabin. I'm looking forward to pictures. My DH and I are considering a move to a lakehouse, but we're not decided yet.

De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Nov 1, 2020 06:48PM illimae wrote:

SeeQ, a lake house sounds amazing!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2- Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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