Topic: Constant fear of lymphedema--VENT

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Mar 28, 2017 10:27AM

Posted on: Mar 28, 2017 10:27AM

gb2115 wrote:

Ok, lumpectomy + 3 nodes removed, and radiation to ALL the lymph nodes. I have already seen a lymphedema therapist twice as part of an ongoing monitoring program (she takes measurements every 3 months or so). No swelling yet. Yet I live in <<constant>> fear of lymphedema. The list of precautions is almost overwhelming, everything that needs to be done to protect the arm. Every paper cut freaks me out. And activity...from what I read activity prevents lymphedema, treats lymphedema, and causes lymphedema. My therapist said to increase activity gradually. Ok, I'm trying to do that, but feel like it's a crapshoot. I did a Leslie Sansone walk away the pounds DVD yesterday (30 minutes) and did about 1/3 of the arm moves she was showing (trying to ease in). Was it too much, I have no clue. Although if lymphedema develops from such gentle arm work, it's probably going to happen anyway and therefore such a person is generally screwed. I used to be soooo active, this makes me want to cry. I might be tearing up...

And the "don't injure your arm" bit. Short of living inside bubble-wrap, how do you do that? I'm at work, and there is a giant mosquito flying around the break room. I will be afraid to go in there to eat lunch, lest I get bitten and end up with lymphedema from a stupid mosquito. I would ask someone to go in there and kill it for me, but they'll think I'm nuts. They already probably do.

Sorry, I'm really frustrated. This is no way to live. I could use a pep talk if anyone can help.

First Dx IDC in 10/16 at age 38, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Lumpectomy + radiation + tamoxifen. Second Dx IDC recurrence in original location 5/21. 1.3 cm ER/PR+, Her2 -. Grade 2. 2/2 nodes. UMX + AC/T + Zoladex/Exemestane + Zometa.
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Mar 13, 2022 08:17PM - edited Mar 13, 2022 08:20PM by parakeetsrule

b123, your symptoms are vague and impossible for anybody here to say what's causing them. You've posted several times now in different forums but the person you really need to talk to is your doctor. Hopefully you can figure out what's going on soon!

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall
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Apr 15, 2022 11:08PM minustwo wrote:

Down the road 8 years. Got my MO to refer me back to an LEPT I know my condition was mild, but I wanted to be re-evaluated. I had no idea how bad the cording was since we just live with what we've got. 6 sessions later - cording mostly gone, fluid draining, new exercises for me to keep it that way.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 16, 2022 05:41AM - edited Apr 16, 2022 05:41AM by rah2464

Thats wonderful news MinusTwo! Work that lymphatic system Heart


Edited I put the wrong name there sorry!

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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