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Topic: Post Double Mastectomy (Stage 3B diagnosed 6 months ago)

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

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Posted on: Dec 23, 2020 12:48PM - edited Dec 24, 2020 07:52AM by Bfree413

Bfree413 wrote:

Hi all,

A bit overwhelmed at the moment so close to Christmas...asking for advice, insight, etc.

My name's Brittany. I was diagnosed with Stage 3B inflammatory breast cancer 7/14/20. I'm a newly wed (7/18/20 due to Covid..married 4 days after diagnosis!), Mother of a 10 year old boy. My husband and I also took care of our future by freezing embryos before chemo :)

I just completed 6 rounds of Chemo & HER-2 treatments. (12 months of Her-2.) Tests came back (breast/brain/heart/bone density) negative post chemo- so no further spreading. This allowed the next journey to unfold which was a double mastectomy. I'm 1 week post-op and pain is manageable, but I just came from my follow up appointment with my surgeon ...to some unsettling news.

I was informed that the Chemo was ineffective towards the lymph node region (right side tested positive originally at diagnosis & lymph nodes were also removed.) So while this was terrible news before Christmas, the surgeon did inform us that my Oncologist mentioned that there are other options and treatments available. I have radiation coming up and I was curious what you ladies have to say on this matter. Any insight, help or positivity would be greatly appreciated.

I will attach a few pictures and links below to share a bit of my story.

Happy Holidays and thank you for reading!

Edited by Mods to remove personally identifiable information.

Dx 7/14/2020, DCIS/IBC, Right, 6cm+, Stage IIIB, Grade 3, 4/18 nodes, ER+/PR+, HER2+ Chemotherapy 8/27/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/15/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Dec 24, 2020 02:23AM blue22 wrote:

Hi Brittany,

Welcome to the forum! I'm sorry that you have to join us but you are welcome here.

I'm not sure I understand what the news was about the lymph nodes. Was the Dr. informing you that they were still positive or was there something else?

Also, it is not just ladies on this forum! Please remember men get breast cancer too!

Take Care,

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Dec 24, 2020 07:51AM Bfree413 wrote:

Hey Blue,

First, my apologies. That was extremely ignorant on my behalf in regards to writing "ladies" when I'm aware that breast cancer affects men and woman. I will fix that immediately.

To answer your question- it was tunnel vision hearing this so I am pulling from my test results online. I will attach below and call my Surgeon and Oncologist today if they are in for further clarification.

"Final Classification of Chemotherapy Response

Breast: Residual invasive carcinoma, with probable or definite response to chemotherapy (minimal)

Lymph Nodes: Metastasis present, evidence of response (minimal)"

I'm aware this might not be enough information but it's all that I have at the moment.

Axillary contents, right; excision:

- Four of eighteen lymph nodes showing metastatic mucinous carcinoma (4/18)

- Largest metastatic focus: 18 mm

- Three of the four positive lymph nodes with very minimal treatment effect

- Very focal extracapsular extension seen

Dx 7/14/2020, DCIS/IBC, Right, 6cm+, Stage IIIB, Grade 3, 4/18 nodes, ER+/PR+, HER2+ Chemotherapy 8/27/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/15/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Dec 25, 2020 03:18AM blue22 wrote:

Hi Brittany,

Hopefully someone else will chime in as well. I also had positive nodes after chemo. I know my surgeon wasn't happy about it either. I would have to dig for some of the terminology to compare to yours, but it is likely quite similar.

I didn't start HP until after surgery, as I was initially HER2-, but my tumor changed after treatment. I also had Xeloda post surgery but after finishing and healing from radiation.

You should be starting radiation once you are healed from surgery. In theory that should take care of anything remaining if the cancer didn't spread further.

It is a tough decision to do more chemo after everything, but something I agreed to. I knew that the chances of something coming back are very high, and I would have regretted not taking the treatment offered. On the other hand, it is more toxicity and that means longer recovery. If I had said no to the Xeloda, I would likely be feeling much better now. I still have fatigue and chemo brain and it interferes with my daily life.

Good luck with the healing from the surgery!

Take Care,

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)

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