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Topic: 31 years old, stage four IDC

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Nov 10, 2020 11:37AM - edited Nov 10, 2020 11:48AM by Amandopando805

Amandopando805 wrote:

hi all

I was diagnosed at 28 years old. Did chemo, double mastectomy, radiation, chemo pills. Currently I'm on letrozole. I made it for about a year with clean scans until my scans showed a small spot in my hip bone. My onc put me on Ibrance for two cycles, and my next scans showed I developed fluid around my heart and the spot in my hip bone grew from 1cm to 2cm, and there's a 3mm spot in my spine. I'm stopping the Ibrance and starting erubulin chemo on the 16th.

I'm in Rochester Ny. Iv been thinking about seeking a third opinion. My first one was in Erie pa, which completely ignored my original massive tumor for years. Iv been in Rochester for a couple years now getting treatment.

Just wanting to post to see if anyone has anyguidance to give me. I am ER+ HER2-

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Nov 10, 2020 11:47AM - edited Nov 10, 2020 11:47AM by Amandopando805

This Post was deleted by Amandopando805.
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Nov 10, 2020 11:56AM - edited Nov 10, 2020 11:58AM by moth

hi, I'm sorry you find yourself here. You probably want to go to the stage IV forums. There is a thread for bone mets which would be very helpful. Have you had rads to any of your lesions?

Have you had.the mets tested or retested for er/pr/her2? Sometimes tumors change hormonal profile. Also if you do a genomic test like foundation or tempus you might find actionable mutations.

Is the cardiac fluid a result of chemo or a metastatic process?

Hugs

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Nov 10, 2020 12:30PM illimae wrote:

Amanda, I’d try for a 3rd opinion too unless you’re comfortable proceeding with your current MO and plan. I was diagnosed stage IV de novo at 41 with a single hip bone met too. If the new chemo doesn’t show improvement soon, you could ask about radiation to that spot. They usually reserve rads to address pain but it may be an option. Good luck :)

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+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary 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+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 10, 2020 01:31PM Moderators wrote:

Amandapando, we're so sorry to hear of this progression, and at such a young age, but we're so glad you've come back to our Community. You're always sure to find helpful responses and great support here -- we're all here for you!

As moth points out, there is a very popular and helpful thread in the Stage IV ONLY forum called Bone Mets thread, where we suggest you introduce yourself and share your story. You're sure to get lots of advice and encouragement there!

We hope this helps. Please let us know if you need anything at all.

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 11, 2020 11:25AM buttonsmachine wrote:

Hey there, if you are thinking about changing oncology teams or getting a second opinion, it might help to go to an NCI designated cancer center, if you haven't already done so: https://www.cancer.gov/research/infrastructure/cancer-centers/find

I transferred my care to one a while back, and things have been much better since then. There is also a Stage IV and Under 40 thread around here, although it is not super active: https://community.breastcancer.org/forum/8/topics/872798?page=2#idx_57

Best wishes to you - it sucks dealing with this in our 30s.

Diagnosed at 32. Local recurrences one year later. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 12/1/2017 AC Surgery 4/1/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 5/1/2018 External: Lymph nodes, Chest wall Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)

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