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

Posted on: Dec 12, 2017 11:13PM

runor wrote:

A while ago, by accident, I discovered an excruciating stretch that seemed to clear up the armpit, side and rib cage lymphedema I've had since radiation. The improvement in the swelling in those areas has been profound and so far, permanent (its only been a few weeks).

The swelling in my arm and hand are somewhat improved. I don't wear my sleeve as often. Some days I don't feel that weird, tight sensation on my hand at all and then I think, wow, I never once thought about my arm / hand all day. Other days it really bugs me.

The swelling in my breast continues, unchanged. At the last ultrasound I had Dec 1, the tech was trying to get all my scars recorded and she said, 'I'll have to get this one down here too'. This one 'down here' wasn't a scar. It's where my breast swells and oozes around my underwire, leaving a deep, angry gouge in my boob every day. To her it looked like a scar. No, just a lot of really nasty and painful swelling. She even commented that the edema in my breast was clearly visible on the ultrasound.

This is what is puzzling and upsetting to me. Every time I lay on the floor and do those stretches, it hurts like hell. It's like in the course of a day all my chest tissues shrink, seize up, bind together and it's like I gain no ground exercise-wise. It hurts just as bad now as the first time I did it. I keep thinking that like all physical work in the past, it gets easier and you get better as you keep doing it. Until now. Every time I stretch it feels like I've never done it before! Is it going to be like this the rest of my life? What is going on in my body that those muscles or ligaments or whatever they are just keep shrinking and seizing up?

I used to be quit flexible. When I lay on the floor, flat on my back, arms straight above my head, one arm lays flat on the floor. But the other, the bad boob arm, it hovers just an inch or so off the floor. It cannot lay flat! And I wonder, is this radiation? Is this because something in my armpit was cut digging for lymph nodes? I guess I may never know for sure. But does anyone else find that each day it's like they've never done their exercises before? It feels like it's the first time you've ever asked your body to move that way? Or will this angry radiated boob and underlying structures ever settle down and get better? (But I am happy to no longer wake up with that thick, heavy feeling under my arm, like I was carrying a stack of school books under there!)

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 13, 2017 08:39AM - edited Dec 13, 2017 08:40AM by hugz4u

I'm No doc but I'm convinced this is rad scarring and yes it feels like you've never stretched before each and everyday. Me to. Im out over ten years. Keep stretching so you totally don't shrink up and have your shoulder roll in like mine did early on when I didn't stretch Yes surgery and rads can make our body contort to different shape.

Wearing a underwire or tight bra is absolutely not good. That is why your fluid will pile up and ouze under your wire. It has to go somewhere. If you wear a tight shaper Cami with no band or jogger bra that's very loose around band you may find you can drain better. But regular tight bras won't be your friend and underwires are plain wrong as you have demonstrated. If you follow this advice you might get relief in your breast.

When you wear a sleeve a gauntlet or glove should be worn to stop pushing fluid into your hand and to drain better.

Ah...it's such a crapshoot too because what works for me may no work for you. But these are general guidelines that normally work. Keep trying and asking. You will get relief eventually. Keep stretching gradually. I do all day long and even though I just 3rd degree sprained my ankle yesterday Ill try and stretch out many times today to not shrink back. Ugh dang

Cancer the gift that keeps giving isreally true.

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Dec 13, 2017 12:44PM runor wrote:

Thanks Hugz.

I am large breasted. Very. Large. Breasted. There is no way a cami, unless it's made of sheet metal, is going to contain this mess! ANd while my wires dig in, it's not that my bras are too tight, it's that my boob keeps swelling. My regular boob has no such gouge marks.

I am very much considering a breast reduction, but am afraid that any sort of surgery will anger the Lymph gods and I'll be in an even bigger mess than I am now! But the radiation onc said to wait a year to let this breast 'settle down' before making any surgical decisions. But my two boobs certainly don't match anymore.

So every day is square one. Well, it's good to know it's not only me. Sorry to hear about your ankle! I hope you mend up fast and if not, I'd get someone else to handle the Christmas turkey! Spend the day with your foot on a pillow!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 13, 2017 03:54PM xxyzed wrote:

I wear a compression vest when my chest feels swollen. It would provide the support you need without digging in like an underwire. I need to stretch out my muscles each day but can see over time the gains that have been made but are also quickly lost with each new surgery or infection. My most recent surgery was 9 months after radiation and the incisions to the radiated area took a lot longer to heal and had a later than expected infection than the other incisions.


Dx 5/17/2016, DCIS/IDC, Left, 1cm, Grade 3, HER2+ (IHC) Surgery 5/31/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 6/9/2016, DCIS/IDC, Left, 4cm, Stage IIIC, Grade 2, 20/20 nodes, ER-/PR-, HER2+ (DUAL) Chemotherapy 7/7/2016 AC + T (Taxol) Radiation Therapy 11/20/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 9/26/2017 Targeted Therapy Nerlynx Targeted Therapy Herceptin (trastuzumab)
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Dec 13, 2017 04:59PM Denise-G wrote:

I am 6 years out from a UMX and have full-blown lymphedema in the "bad" arm.

Stretching still hurts every day, but I do it faithfully. I had breast and truncal lymphdema along

with swelling in arm and hand. Breast and truncal have improved through the years, but if I wear

a too tight bra, it will flare.

Sending you all the best!

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Dec 13, 2017 11:21PM - edited Dec 13, 2017 11:24PM by hugz4u

runor. Oh my you poor dear. Yes wait till things settle. You can sleep in a tight Cami or tight compression tee That may give you some control for a few hours even though you have bra on the next day. Ditch bra if you can when you get home, they are the worst but yes you need to have boob support for large breast.Test it out. Try my tai chi breather exercise I posted. So easy. Takes barely any time. Drains fluid. Studies done on this exercise, effective

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Dec 14, 2017 06:03AM Binney4 wrote:

runor, I'm wondering if you've tried a breast binder? It does kinda make for a uniboob look, but it sure does support without cutting off lymph flow. The marks you're describing on your affected breast when you take off your bra do indicate that lymph flow is backing up due to the underwires. Lymph vessels lie close under the skin, so smooshing them is unfortunately easy to do.

Here's a good one (if you decide to try one, be sure to order the lined one--softer and more comfortable):

https://www.healthproductsforyou.com/m-expand-a-ba...

More options to consider at the bottom of the page here:

http://www.stepup-speakout.org/breast_chest_trunck...

Gentle hugs,
Binney


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Dec 15, 2017 12:45AM runor wrote:

Uni-boob, to match my uni-brow. Thanks, I will have a look at those links! And will keep exercising!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 15, 2017 04:36PM justgivethanks wrote:

I was diagnosed in 2012...now third time with mets....I have swelling 3 inchs above and 3 inches below my elbow...not my entire arm...does anyone have this kind of swelling



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Dec 15, 2017 07:22PM Moderators wrote:

Hi Justgivethanks-

We want to welcome you to our community. We're so sorry you find yourself here fighting this battle, but we hope you find this to be a place of support when you need it.

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Jan 10, 2018 07:27PM hugz4u wrote:

Justgivethanks.

Sorry for delayed response. Yes that sounds like lymphedema.

Go to stepup-speakout.org to find a therapist near your town to get looked at.our girls here made that website and it’s a great one stop shop place.

This has to be taken care of sooner than later if it’s lymphedema. It can really get out of hand if not taken care of.

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Mar 11, 2018 08:42PM illimae wrote:

Runor, how’s the bad boob, any improvement?

I am dealing with Breast Edema too and it sucks. I had a reduction and lift (both breasts) with my lumpectomy but the breast swelled after rads. I do my stretches but it’s been several months now and I’m really ready for relief. Just started wearing a compression cami this week, we’ll see how it goes.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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