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Topic: Concerned about developing Lymphedema

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Dec 8, 2019 09:08AM

Plum wrote:

Since August 2019 I've had 2 lumpectomies (August, September) because of a DCIS diagnosis and a mastectomy (November) on my right side. Repeated lumpectomy because of the DCIS margin went beyond the surgical area. Lumpectomy pathology showed invasive cancer. A biopsy was done on one lymph node during this surgery and it was negative. Surgeon now wants to remove all my lymph nodes under my arm. Because of the repeated surgeries to my right side, I am very concerned about developing lymphedema. I am a very active (do lot of sports),slim 63 year old woman with no other medical issues and want to keep up that lifestyle. Any advice would be welcomed.

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Apr 16, 2020 03:12PM petite1 wrote:

I had my appointment with the MO and I do have lymphedema in my breast.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/19/2019 Arimidex (anastrozole)
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Apr 20, 2020 11:59AM Prairietwin2 wrote:

I have a friend who has had L for years! She manages sister had all her l nodes removed twenty two years ago and never got lymphedema

Dx 1/17/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+, HER2- Radiation Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Hormonal Therapy Femara (letrozole)
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Apr 20, 2020 07:13PM cyathea wrote:

I echo my sisters, Plum. Get a second opinion or at least ask your doctor why removing all the nodes is the best course of action based on the type of cancer you have, size of tumor, genetics, etc. Specifically ask: what would change in the treatment plan based on this action?

I was told about the risk of LE by the surgeon and I educated myself pre-surgery, but nothing prepared me for the quality of life change that came from the swelling. I’m not sure that it is LE yet, but I’m proactively treating it like it is to avoid worse problems.

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Apr 20, 2020 11:07PM santabarbarian wrote:

I pushed back against my surgeon, regarding taking all my nodes. I had TNBC, and the whole enchilada with that disease is whether you have pCR from neo-adjuvant chemo or not. I had what APPEARED to be a pCR per my post chemo MRI (not yet verified by surgery) and thought, Gee, if my cancer is gone, why take all those nodes? I asked my BS: can you take a sample, check out my tissues, and go back for more if I have any cancer in there? My surgeon agreed and took 4 nodes. No cancer anywhere. I am so glad I did not lose all of them.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes

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