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Topic: Breast lymphedema

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: Jul 5, 2020 11:05PM

Abbidoodle wrote:

I'm 15 months post lumpectomy and 7 months post radiation. I have had lymphedema in that breast and under my arm for over a year. It's still red, warm, heavy and sore. I am finally going to be sent to the lymphedema specialist for therapy. I have no problem at all in my arm, but I was wondering if anyone has had lymphedema in the breast and if so, has it ever gotten better? I'd appreciate any info on this.

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Jul 5, 2020 11:16PM Trishyla wrote:

I have lymphedema in both breasts and in my trunk. It comes and goes. I've been to a massage therapist who specializes in lymphedema. It helps tremendously.

That being said, I consulted with one of the top lymphedema doctors in the US, Dr. Ketan Patel at USC. He told me they really don't worry too much about breast or truncal lymphedema, since there are so many outlets for drainage. They are more concerned with lymphedema in the limbs, as there are not enough ways for the lymph to drain.

One of the things I've found most helpful is dry brushing. Once you learn the lymph drainage patterns you can use it instead of self massage.

Hope this helps. Good luck.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Jul 6, 2020 05:33PM flashlight wrote:

Trishyla, I was just diagnosed with this. What is dry brushing? Do you wear compression garments? I just started therapy at the lymphedema clinic, but they seem more interested in the swelling in my shoulder and cording.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Jul 6, 2020 06:35PM Trishyla wrote:

I do occasionally wear a compression garment for my truncal lymphedema, but only if I can't get the swelling down by other means. It's hot, uncomfortable and extremely unattractive.

As I mentioned, I do go to a lymphedema specialist when things are bad. She has taught me a number of exercises and self massage techniques that I can do at home. Dry brushing is just doing that "massage " with a natural bristle shower brush. It's a very common technique used in Japan and South Korea to stimulate circulation and get get of dry, dead skin cells. I got my brushes off Amazon.

Google "Dry brushing " and some good info should come up.

Hope this helps. Good luck.

Trish





Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Jul 6, 2020 07:00PM MinusTwo wrote:

Make sure you're going to a certified, trained LE specialist. Link attached with lots of good info. https://www.stepup-speakout.org/

I have breast & truncal lymphadema. My main goal 6 years out is to keep it from progressing to my arms. I wear a Compression Bra 24/7. The Sydney Bra from Wear Ease isn't too heavy, dries quickly and allows you to wear clothes with normal necks. This is a woman owned company in the USA and they are very good at helping if you call. https://www.wearease.com/products/sydney-bra?varia...

If I'm doing repetitive things, I wear sleeves. And I always wear sleeves & gauntlets when I fly. I also carry a prescription for an antibiotic when I'm traveling in case of a cellulite episode. I don't allow any blood pressure cuffs on my arm, and no blood draws or sticks.

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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Jul 6, 2020 07:21PM Trishyla wrote:

Good advice, MinusTwo. Unfortunately, since I had cancer in both breasts. I had to have a BMX with nodes taken on both sides. Makes it tougher to avoid BP and needle sticks.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Jul 20, 2020 07:44PM - edited Jul 20, 2020 07:45PM by lifegoeson

Minus Two - I also have breast and truncal lymphedema. I just looked at the Sydney bra you posted and I have a question because from the photos it looks like all the models have breasts. I had bilateral mastectomy and I just had explant surgery, so I’m flatand I'm not using prosthetics. Would the Sydney bra work for that or is the cup too large for a woman without reconstruction? Thanks for any insight on this.

Dx 1/29/2009, DCIS, Grade 2, 0/2 nodes, ER+/PR-
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Jul 20, 2020 08:12PM MinusTwo wrote:

Lifegoeson - I think it would work. There are stretchy pockets and it comes with lightweight fabric inserts. They are really great about helping on the phone. Give them a call and ask. Call Us! We're Open From 8am - 4:30pm MST - 866-251-0076

Trishyla - Yup - I too had a BMX with SNB taken from both sides. Then a recurrence with ALND on the right, so that side is definitely a problem. I do allow BP on the side that is less effected, but I ask them to use a manual BP cuff. It's not as restrictive. I get all shots in my hip or butt. It was a pain to find somewhere that would do that - even for yearly flu shots - but finally found a specific Kroger pharmacy (of all things). I hung on to my port as long as possible, but finally had to let it go. Now I don't allow blood draws except from my ankle. So I only get blood work done twice a year.

I think the only time I had an arm stick was last year for contrast for a breast MRI. They didn't/couldn't/wouldn't do my foot and I really wanted to get the test done. I made sure they used a pediatric butterfly needle. Luckily I haven't seen any resulting problems. For my cataract surgery, they put the IV line in my ankle and the BP cuff on the other calf.

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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Feb 24, 2021 03:19PM Lainey64 wrote:

MinusTwo - I just wanted to let you know that I ordered the The Sydney Bra from Wear Ease based off your recommendation. I've been chatting with you in the facial LE thread! I ordered the bra on Monday from Bandages Plus and it arrived today! Great customer service. I just put it on and it's a little tight but not unbearable. I feel like I'm getting good compression from it. The best part about it is that it isn't too binding around my rib cage. That is a tender area for me and I have trouble with most bras because of it. Anyway, I got it today and thought i wanted to come back to the thread where I originally read about it and low and behold it was another one of your great recommendations! :-)

www.caringbridge.org/visit/ela... Dx 10/16/2008, IDC, Left, Stage IV, metastasized to lungs/other, Grade 3, 2/36 nodes, ER-/PR-, HER2-
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Feb 24, 2021 11:06PM MinusTwo wrote:

Woo Hoo - hope it works for you. Those of us in Texas have to consider the extreme heat (although not this month) and I've found this bra to be comfortable in our temperatures.

FYI - the "nude" seems to be less tight than the fushia or black or white. Someone tried to explain to me it's the quantity (number of layers) of material on the cutting table when the blade comes down. Material on the top is a little different size than material on the bottom. Do let us know if it works for you.

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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Feb 25, 2021 09:24AM Lainey64 wrote:

I was telling my husband last night that I think I need to order a 2nd one. I think I'll get the nude since you suggested it. I didn't find it to be too hot but it did take a little getting used to. I've only worn it one day so I know I need to give it time. Thanks!

www.caringbridge.org/visit/ela... Dx 10/16/2008, IDC, Left, Stage IV, metastasized to lungs/other, Grade 3, 2/36 nodes, ER-/PR-, HER2-
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Jul 18, 2021 08:36PM Wholenewworld wrote:

I have it in my breast and around the back (truncal). It’s been 5 years and it’s managed well with manual drainage massage every other day unless I have a flair up and then daily, compression tanks (I cant wear bras or I swell under the band), and I see a CLT once a month for maintenance. I only wish there were more options for tank/bras. Ive tried every one out there and wasted a ton of money. I use the WearEase Slimmer tank daily and like it, but would love other options.

Dx 2/2016, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-

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