Topic: If you are not Stage IV but have questions, you may post here

Forum: Stage IV/Metastatic Breast Cancer ONLY — 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: Mar 3, 2012 05:22PM - edited Feb 27, 2020 01:14PM by chrissyb

Posted on: Mar 3, 2012 05:22PM - edited Feb 27, 2020 01:14PM by chrissyb

chrissyb wrote:

This thread is for those people who are not stage IV but are having concerns or questions regarding stage IV.

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 6, 2022 03:36AM merkmurf wrote:

Thanks for your insights Kbl. I left the appointment happy and feeling good, so happy I have a proactive oncologist, then at about 8 pm I started to replay our conversations and got worried. In the end, I’ve accepted I need to be happy for each day I’m given.

We (me and my oncologist) are most worried about the dirty margins. I’m not sure how the spread will happen if it happens. Locally or distant. I’m tender in the area of the tumor (where they didn’t get clear margins), but that could be from rads. It’s hard to tell if something has changed or is lumpy because everything is lumpy there 🤣 everything just feels different, so I do t know what is “normal” anymore. I just want that crystal ball. Do I have 1 year or 20?

Merkmurf Targeted Therapy 12/9/2021 Verzenio
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Mar 6, 2022 07:41AM kbl wrote:

I totally understand where you’re coming from. It’s something, sadly, we think about every day, but I am feeling decent, so I accept each day I’m given with appreciation and even more so when I’m feeling okay. I’m sorry you’re having pain. Each pain brings us to that place we don’t want to be in our heads. After I started having the symptoms in my stomach, it took six months before we figured out what it was. The cancer has never been found in my breast, so I haven’t had any surgery.

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- Hormonal Therapy 6/23/2019 Femara (letrozole) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Mar 7, 2022 01:19AM anx789 wrote:

Hi Kbl, what wer the symptoms your were having in your stomach?

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Mar 7, 2022 06:39AM - edited Mar 7, 2022 06:41AM by kbl

anx789, hi! In October of 2018, I started feeling full after just a few bites. I lost 17 pounds without trying in a matter of months. I went below my pre pregnancy weight of 30 years ago. I was nauseous every time I put something in my mouth. Thankfully, my primary told me to have an endoscopy. They found the cancer in biopsies in three parts of my stomach, the angularis, antrum, and body. To note, when the gastro took the biopsies, he literally said my stomach looked normal. He was completely shocked it came back cancer. Mine was a missed diagnosis from 2013, so I had six years with no meds. I was on Ibrance but switched to Xeloda when the not being able to eat and weight loss started again. I've been on it since September. Just had my yearly endoscopy. They only find the cancer in the stomach body right now. It's stable in my whole spine, including bone marrow. I’m still loaded with it there.

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- Hormonal Therapy 6/23/2019 Femara (letrozole) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Mar 10, 2022 12:33PM jenjenl wrote:

quick update - They performed a chest, abdomen and pelvis CT scan which came back normal. To be safe, they are ordering a bone scan too. Would a CT be able to see lesions?

41 year old wife and mother of 2 children, ages 12 and 10. BRCA1+ (33 at dx) Dx 10/30/2012, IDC, Right, <1cm, Stage IIA, Grade 2, 1/15 nodes, ER-/PR-, HER2- Surgery 11/11/2012 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Chemotherapy 12/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/21/2013 Radiation Therapy 4/28/2013 Breast Surgery 7/21/2013 Mastectomy; Mastectomy (Left) Surgery 1/19/2014 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Mar 11, 2022 05:46AM - edited Mar 11, 2022 05:49AM by kbl

jenjenl, I think CT scans do work much better for those with IDC. I have lobular, and CT doesn't pick up any of the cancer I have. I hope your pain is better. That’s great that nothing was found. It’s always perplexing when we have pain and don’t know why.

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- Hormonal Therapy 6/23/2019 Femara (letrozole) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Mar 19, 2022 09:20AM jenjenl wrote:

The pain is not better and I'm taking Tylenol regularly now. The bone scan is on Tues so I should know more on Wednesday. I don't have a good feeling. Sadly, to me the probability is more its mets than other back problems normal people have. We leave for Hawaii in 2 weeks for 2 weeks.

41 year old wife and mother of 2 children, ages 12 and 10. BRCA1+ (33 at dx) Dx 10/30/2012, IDC, Right, <1cm, Stage IIA, Grade 2, 1/15 nodes, ER-/PR-, HER2- Surgery 11/11/2012 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Chemotherapy 12/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/21/2013 Radiation Therapy 4/28/2013 Breast Surgery 7/21/2013 Mastectomy; Mastectomy (Left) Surgery 1/19/2014 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Mar 24, 2022 09:35AM jenjenl wrote:

bone scan came back clear. I went to a spine specialist this week and he indicated there is something going on with my back and/or nerves. When he did a series of reflex tests, my body did not react. I'll have an MRI when I get back from Hawaii. Back pain is so painful.

41 year old wife and mother of 2 children, ages 12 and 10. BRCA1+ (33 at dx) Dx 10/30/2012, IDC, Right, <1cm, Stage IIA, Grade 2, 1/15 nodes, ER-/PR-, HER2- Surgery 11/11/2012 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Chemotherapy 12/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/21/2013 Radiation Therapy 4/28/2013 Breast Surgery 7/21/2013 Mastectomy; Mastectomy (Left) Surgery 1/19/2014 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Mar 24, 2022 11:58AM kbl wrote:

Jenjen, I’m sorry you’re in pain. When we don’t have the answer as to why, it’s just so frustrating. I hope you can enjoy Hawaii

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- Hormonal Therapy 6/23/2019 Femara (letrozole) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other

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