Join Us

We are 220,441 members in 84 forums discussing 161,933 topics.

Help with Abbreviations

Topic: GRRRRRRRRR I HATE LE..........

Forum: Lymphedema —

Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.

Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.

Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Oct 14, 2010 07:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
Log in to post a reply

Page 338 of 342 (10,241 results)

Posts 10111 - 10140 (10,241 total)

Log in to post a reply

Dec 8, 2019 07:34PM mammalou wrote:

I developed a cellulitis infection on November 15th. I’ve been treated with antibiotics but I still notice redness or more pinkness in the area where the infectio was. Can anyone tell me how long it takes to clear totally. Is it normal to remain pink for awhile.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
Log in to post a reply

Dec 8, 2019 10:33PM LindaKR wrote:

i was hospitalized for almost a week, with cellulitis, in October, I was on IV antibiotics for 5 + days, then on oral antibiotics, 2 kinds, for 3 and a half weeks. I was told to stay on antibiotics for 3 days after the signs of infection, like redness and warmth were gone, and my skin looked pretty much normal. So, I think if you have redness still you need to contact your doctor. Mine went from not much to life threatening in a couple of hours. Also, take temperature and make sure it's not elevated.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jan 8, 2020 08:12PM maj2 wrote:

HOPE FOR LYMPHEDEMA!

After surgery and radiation I had major edema swelling in the left arm, torso, ribcage. Went to PT, learned self-massage techniques, wore compression garments and so forth. They told me I'd probably always have it and would need to wear those garments forever. Then I started doing Zumba at the local YMCA and ... like magic ... the edema gradually went away.

Go figure. My doctor seemed surprised. He never suggested any connection between physical movement and circulation. In hindsight, seems kinda obvious to me. In any case, I no longer have any swelling and don't need compression garments.

So don't give up regardless what they tell you, it can get better.

Log in to post a reply

Jan 8, 2020 08:16PM MinusTwo wrote:

Yes maj, you can have a remission. Exercise is good, they just recommend starting slowly & building up. But it could come back at any time. Be sure you take all the precautions you can.

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
Log in to post a reply

Jan 20, 2020 10:57AM VLH wrote:

Great news on your exercise program providing relief from the edema, maj2.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Jan 22, 2020 10:20AM reflect wrote:

Hi I need some advice. I have cellulitis (6th time) and have been on antibiotics for over 48 hours, 2 IV infusions in the hospital and oral since then. Redness is receding and swelling is awful. When can I safely resume compression? I've had different answers, even from doctors. What have you been told? Thanks in advance.

Hormonal Therapy 9/20/2015 Arimidex (anastrozole) Radiation Therapy 10/1/2015 Breast, Lymph nodes Dx 2/3/2016, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 7/17 nodes, ER+/PR+, HER2- Chemotherapy 2/25/2016 AC + T (Taxol) Surgery 9/13/2016 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
Log in to post a reply

Jan 22, 2020 12:11PM - edited Jan 22, 2020 12:11PM by MinusTwo

reflect - I see your post but don't have enough experience to answer. Hopefully Binney or Hugz or someone with more knowledge will check in.

Edited to add - soooooo sorry you're going through this.

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
Log in to post a reply

Jan 22, 2020 08:08PM - edited Jan 22, 2020 08:09PM by JO-5

reflect,

I had 7 bouts of cellulitis since 2004, with one 3 day hospital stay. The last was the worst.

I got bit by a deer fly on that arm. I had all the swelling and redness of cellulitis and 5 rounds of antibiotics never touched it.....No pain and no fever. No other symptoms of cellulitis.

I finally got into a therapist and it was actually a very bad LE flare from the bite .

She did some very very gentle massage even with that.

All the other times I waited, drs orders, until the redness and most swelling was down before doing any massage at all.....then started with just a feather light upward stroke.

Things change so fast.... that the thinking may be different by now, but I certainly would not be in a great hurry to do much massage.

Perhaps someone else will be along shortly to give more info.

Joanne


IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Jan 22, 2020 08:36PM reflect wrote:

thanks Jo5 and minus2, I will try to contact LE PT tomorrow. So discouraged.

Hormonal Therapy 9/20/2015 Arimidex (anastrozole) Radiation Therapy 10/1/2015 Breast, Lymph nodes Dx 2/3/2016, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 7/17 nodes, ER+/PR+, HER2- Chemotherapy 2/25/2016 AC + T (Taxol) Surgery 9/13/2016 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
Log in to post a reply

Jan 22, 2020 09:53PM SerenitySTAT wrote:

reflect - I've only had cellulitis once where the redness and swelling were located mainly on the side of my elbow. My regular sleeves felt too tight around my elbow, so I used my night compression sleeves with the velcro loosely attached. They're also easier to take on and off since I wanted to check the area frequently. I saw my LE therapist after I had healed, and she thought I did the right thing. I hope you feel better soon. The redness went away after a day, but I remember the pain lasted until day 9 of the antibiotics. I was worried I would have to go back to the ED.

"Do not overlook the little joys!" (Hesse, 1905) 🐶☕️🛀🖼🥐🌲🎭 Dx 11/2015 IDC Left IIIC 10/11 nodes ER+PR+HER2-, 12/2015 Left Mast, 2/2016 4 AC+12 Taxol, 9/2016 Rads Nodes Chest wall 15+4 boosts, 10/2016 Tamox, 4/2019 Exemestane, 12/2019 Ibrance/Xgeva
Log in to post a reply

Jan 23, 2020 06:32PM Vargadoll wrote:

Oh my goodness! So sorry to read this! I've had cellulitis but not that severe. I had to wait a week after I finished my antibiotics to use my flexitouch pump. But no one told me not to wear my compression! I wore it well I had a bacterial infection and cellulitis ! Hope you get the right guidance soon !

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy
Log in to post a reply

Jan 23, 2020 06:32PM Vargadoll wrote:

Oh my goodness! So sorry to read this! I've had cellulitis but not that severe. I had to wait a week after I finished my antibiotics to use my flexitouch pump. But no one told me not to wear my compression! I wore it well I had a bacterial infection and cellulitis ! Hope you get the right guidance soon !

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy
Log in to post a reply

Feb 27, 2020 11:39AM - edited Feb 27, 2020 12:16PM by JO-5

Hello Ladies,

I haven't been here for a while. My right arm where the deer fly bit me is still a bit swollen and doesn't go completely down no matter what I do....but much better.

I don't renember if we have ever discussed truncal and abdominal LE on this thread.

First I should remind you that I had an LD flap 5 yrs ago, and that has caused my whole right trunk to be swollen. Some days are better than others.

My question is......any of you with abdominal/truncal LE....does the foot and leg on that side ever swell? My right ankle and calf is swollen... and I have not been walking a lot nor did I twist it. It also has a slight burning pain like my arm when the LE flares.

I do have a bad knee on that side but can't have replacement because there is no pain med I can take.

ANYONE ELSE?

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Feb 27, 2020 01:08PM MinusTwo wrote:

Jo - Wow - so sorry to hear that you're still having problems from that dag-blasted deer fly. I'm sure this sounds evil & cruel, but I hope you smashed him.

I have truncal & breast LE on the right side since my ALND surgery. So far I haven't had any problems with calf or ankle. When I'm sitting I usually have my legs up and I walk a fair amount, but I don't know if that makes any difference. What does your LEPT say? Hopefully someone else will have more experience.

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
Log in to post a reply

Feb 27, 2020 02:09PM - edited Feb 27, 2020 02:14PM by JO-5

I have been sitting way too much....because of knee pain, but I will start moving more...in case that is the problem

I usually always elevate my legs when I sit ...but I got a new laptop (always had desk top before) and have been sitting more and yes I have a laptop pillow for the heat...and feel no heat from the laptop.

Do need to lose 10 lbs, that I gained over the Holidays!!! Having a hard time with that too.

I am also drinking enough water. I read DON'T drink too much water if you have edema.....then DRINK WATER for leg feet swelling and I know we LE ladies have to drink water......WHICH IS CORRECT?

I think maybe I just answered my own question. MOVE MORE!

I have not seen my LE therapist since she released me for the fly bite. She told me that my arm may always have a bit of swelling and a little pinkish color. Right now it's looking ok.

(Didn't kill the fly because they inject an anesthetic and you don't feel the bite. By the time you know you've been bitten it's too late.)

Joanne


IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Feb 27, 2020 02:44PM Vargadoll wrote:

I have truncal and abdominal LE. I have not had a problem with my leg but my right hip does hurt. I had a MRI and it came back clear not even arthritis!

I'm sorry you are having an issue! When you are told LE and it's for life....sigh.....

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy
Log in to post a reply

Feb 29, 2020 05:53PM AuthorSpot wrote:

I was wondering if anyone has had LE before their surgeries or radiation? I'm waiting on my core needle biopsy results, but I have a 3cm mass in my left breast. I was BIRADs 5 with high suspicion of malignancy in both the mass and a swollen lymph node under my arm. For months, before I felt the mass, I had been complaining to my doctors that my left arm kept going numb, or tingly, or aching. One night I couldn't even get to sleep because no position was comfortable for my arm. The doctors kept blowing me off and telling me it was due to nerve issues in my neck. But I have that in my right arm as well, and this felt different. After I found the lump in my breast last week I noticed that my left arm is definitely swollen, and I'm wondering if it's from that lymph node? Does this mean I'm probably going to have LE in that arm permanently? I'm sorry you are all dealing with this. Definitely not a club wanted to join, and it's too soon for me to gnash my teeth with you all, but I'm definitely feeling a little pissy about it. :(

Dx 3/2/2020, IDC, Left, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2-
Log in to post a reply

Mar 1, 2020 10:07AM Binney4 wrote:

Jo, hello!

I have truncal LE that over several years moved to abdominal LE as well, and then showed up in my lower leg. I've been wearing knee-high compression stockings on that side, but lately I notice the upper leg is also sometimes swollen, so I ordered a thigh-high to try. Have you learned Manual Lymph Drainage for the abdomen and leg? Good skills to have in your LE toolbox. Hopefully what you're dealing with will be readily helped by more activity, but if not please know it, too, is manageable. The Lebed opening is still my go-to for both management and flares, including arms, legs, thunk or abdomen.

Knowing you, you'll be on top of this soon! Gentle hugs,
Binney



Log in to post a reply

Mar 1, 2020 10:14AM Binney4 wrote:

AuthorSpot, hello,

I sure wouldn't pretend to know what you're dealing with, but since you're just asking about possibilities, it isn't unheard of for some tumors to block lymph flow, resulting in a temporary swelling problem that improves when the blockage is removed. For now, I'll be looking forward with you to cheering biopsy results and smooth sailing moving forward. Keep us posted, please!

Gentle hugs,
Binney

Log in to post a reply

Mar 1, 2020 12:48PM JO-5 wrote:

Binney,

When you say your LE has gone to your abdomen, is your abdomen swollen? Slowly but surely ever since the LD flap in 2015 the LE in my trunk has gone to my abdomen.I look like I'm pregnant! I did gain about 10 pounds but am losing it .... nothing that should cause my abdomen to be this large.

I did get lazy with the Lebeds because the scar in my back where they took the lat muscle spasms when I do much of the Lebeds. I am not able to do any that causes me to have to stretch much because of the loaf that is still under my right arm, so I've had to modify some of the Lebeds. I will get back to it and just not do as much. I suppose some is better than none at all, right? It is so hard to do any exercises when you hurt 24/7 and any stretching hurts for days.

I do not know any MLD for the legs, but will see what I can find on line. My LE therapist did show me some for my right side abdomen but it really does not help much. I have a Solidea abdominal compression band that helps if I can wear it long enough. That makes the loaf under my arm (where they ran the lat muscle through) swell and hurt.

I'm a mess, for sure. Since I've been trying to move more the swelling in my foot and lower leg is not as bad. I don't know what is from the upper body LE and what might be from my bad knee.

Thank you for answering.....and though I'm sorry you are having yet even more LE ...... I appreciate knowing it really can be from the upper body LE.

This thread is aptly named isn't it? Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Mar 1, 2020 12:53PM JO-5 wrote:

AuthorSpot,

I agree with Binney. My first thought was the tumor is causing the swelling and tingling in your arm. Hopefully, when that is addressed and the pressure removed, the swelling will go down. Our best to you and you may indeed not have to deal with LE afterwards.

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Mar 1, 2020 01:12PM Binney4 wrote:

Jo, I'm not sure what you mean by your therapist showing you MLD for your "right side swelling," because even if the swelling is only on one side (mine is too) the MLD addresses both sides of the abdomen. Especially important when you think of where you want to move the lymph fluid to. With a full abdomen routine you can move it to the opposite groin nodes so it doesn't end up in your swollen leg. Abdominal MLD starts just like arm or chest MLD with clearing the nodes in the area where you want to direct the fluid to. Can you make an appointment with her/him and get a tutorial for an MLD that will help clear both your abdomen and your leg, without clogging the trunk or arm? You'll need to direct fluid to your unaffected leg in order to avoid moving it upward toward your underarm.

On the exercises, don't overdo on movements that cause pain, because pain brings more lymph fluid to the area--makes sense because the lymph fluid is a "garbage truck" that's supposed to carry away any damaged cells or other "junk", so it responds to calls of pain. On the Lebed tape she often says, do such-and-such "if you can do that." So, yes, modify any movements you need to and don't set yourself up for pain.

Yep--Grrrrrrrrrrrrrrrrrrrrr!
Binney

Log in to post a reply

Mar 1, 2020 02:04PM JO-5 wrote:

Binney,

When I saw her last I was there for that fly bite and she was concentrating on my arm and at that time my trunk was not swollen much at all. She had showed me how to take it across my back so as to avoid shoving lymph into that loaf but it caused a lot of pain across the back scar so she showed me how to take it down my right side to the groin. I suppose in trying to get the swelling out of my abdomen, I have been pushing it down into my leg! Also it is not doing anything for my huge abdomen. I've never had a waist line this big!

She never addressed taking it across the abdomen to the other side. She did take note that I had some swelling in the abdomen in the right side and she is the one that told me about the Solidea abdominal band because I can't stand anything really tight around my back scar. (I still have spasms in that scar)

I suppose I could call and see if she could see me, but it is such a hassle. She is out of network and insurance will pay because the one on the insurance has had so many complaints, but it takes forever. I see my BS in April and will talk to her about it. She could expedite me getting into the therapist sooner than me trying to do it myself.

Meanwhile I will do the Lebeds, lose more weight, drink more water and look on the internet for abdominal MLD. I've been doing a lot of this all on my own for years.....(perhaps you remember the problems I've had with LE therapists and LE clinics closing, etc etc...) The one that I had for my fly bite arm......not even sure she is still at the same place. She is the only one in this area that knows what she is doing....and seems to move around a lot. She has been at three different places in the last 5 years.....maybe more money, who knows?

I have been hoping our hospital would hire her.....because the one they have should be fired! But that is another story for another day.

If you or anyone knows a good site on line for abdominal MLD, I would appreciate if you could post it.

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
Log in to post a reply

Mar 3, 2020 12:58PM MinusTwo wrote:

Wanted to share this info since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.

Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.

https://stanfordhealthcare.org/medical-clinics/center-lymphatic-venous-disorders.html/presentation-mode/stanford-health-care-now/health-library-videos/rockson-lymphedema-treatments

And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.

5/30/18 talk at Stanford - Center for lymphatic & venous disorders
Diagnosis, treatment & research
Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR

Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training.
Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems.
Most important to PRESERVE working lymph movement which will PREVENT progression
ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft.

10 million people in the US have LE. 90 million world wide
With breast cancer - chances 15-20% of developing LE
90% of the problems develop in the first year but risk never goes away.
So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are???
If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression.
But if you're in the 1% - do you want to take that chance???

With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out
You have to determine what you are willing to risk.
Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery

New bio-impedance surveillance - if treat REALLY early, can reverse the problem
Coming - Biobridge implant at time of breast surgery

AND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.

https://lymphaticnetwork.org/



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
Log in to post a reply

Mar 8, 2020 10:07AM SuQu31 wrote:

Just hopping on to try to get out of my system how incredibly angry and sad I am to have lymphedema, and how I'm struggling to come to terms with it. Only three nodes removed, not overweight, did not do anything to cause it other than having breast cancer and multiple surgeries. It's just not my nature to give up, and I want to cure it, which I understand is not possible.

I realize I have so many reasons to be thankful with my diagnosis, but I am so jealous of people who are able to move on and forget about their cancer. I'm reminded every single day. My lymphedema is not severe, but it still impacts what I wear and what I do for the rest of my life. Oh breast cancer, you are a horrible beast.

Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
Log in to post a reply

Mar 8, 2020 10:54AM BlueGirlRedState wrote:

Has anyone had trouble getting a provider to respect your wishes, perhaps contrary to "their policy". I have lymphedema in R- arm, due to a new cancer in R-axilla. Prior TX for cancer in L-breast included 2 node removals both times. 3 techs with 3-4 pokes each could not get IV into R-arm for January CT. I requested they use the left arm, since no swelling there, and to please contact my oncologist. They refused, since lymph nodes had been removed on that side. They finally used an ultra sound guided "deep" IV,which went very smoothly.

Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric (Curcumin), Glucosamine-Chondroitin, BoneUp (multi with Collagen), Thorne (another multi), Melatonin (at night). Self-massage for lymphedema as well as therapist. Acupuncture.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.

8/2019 CT, Breast/chest, neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.

10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.

1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.

2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray

Log in to post a reply

Mar 8, 2020 04:23PM MinusTwo wrote:

BlueGIrl - hooray - B-9. Yes, I fought with 5 different docs & 3 hospitals until I finally found one that would do blood draws from my ankle. Funny - it's the doc in charge of transplants & blood donors who said he would do it. It's a hassle every 6 months, but glad to have that option.

As for shots, most docs don't have/keep the drugs on hand anymore. I finally found a Kroger grocery store has a little cubby behind a panel and they will do shots in my hip or butt. Before I found them, I paid $200 to have the old shingles shot in my hip at a compounding pharmacy/stand alone infusion place. Now Kroger does flu, pneumonia, shingrex, etc. My Gyn will do the Prolia in my abdomen.

I have breast & truncal LE. I do let docs take BP in my "less" effected arm ONLY IF they do it manually. For things like colonoscopy or cataract surgery - they had to do the IV in my ankle and the BP on my calf.

SuQu - I understand your anger and am so sorry. Yes, we have to be aware every day and it certainly effects what we do & what we wear. I'm mostly comfortable with a WearEase Sydney compression bra. The front has a deep "V" so I can wear most of my scoop neck or summer tops, but it still comes up enough under the arms and the back to give me support. Fortunately - so far - I only wear sleeves & gauntlets for flying or continual repetitive actions. I was so grateful to have a supportive RO who got me to an excellent LEPT for initial treatment & training.

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
Log in to post a reply

Mar 8, 2020 04:51PM SuQu31 wrote:

Minus, Thank you for your response, and thank you for consistently helping so many with advice and experience. I had to convince my doctor to send me to PT for ROM after my re-excision, then for LE. She told me at first that I did not have LE (because apparently I was unlikely to get it, but to her credit (and because of my persistence), she did eventually send me to PT. I was less than impressed with the therapist, mainly because she gave me some Dos, Donts, fitted me for a sleeve and some exercises. And that was it. Two visits. She agreed that I have slight LE in my side under my armpit, but felt it wasn't severe enough to treat. Well, I'm glad it's not awful, but I was hoping for something more aggressive as far as treatment goes. Oddly, softer, more “compressing" bras bother my side and make it swell more than the underwire bras my PS wants me to wear, post exchange surgery. Still working on the bra thing. I will look into the one you wear.

And don't get me started on the insurance issue. My LE is caused by my cancer and treatment, so under my policy, the PT should be covered 100%. (Or that's my way of thinking). I never could get anyone to code it properly, and when the bill became overdue and apparently would threaten my good credit, I just paid it. My insurance still paid some and honestly, the time I wasted fighting it would have been better spent working and making money. But frustrating!

I've been looking for other options for LE treatment, and have not been able to find much. There is an NCI hospital in my city, so surely they have someone specifically for LE, but so far my online searches have not identified anyone there. I will not give up, though. Thanks for listening to my frustration.

Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
Log in to post a reply

Mar 12, 2020 09:05AM - edited Mar 12, 2020 09:10AM by StellaStarr

I have had cellulitis 13 times in 5 years. Twice in the last 4-5 months. My healthplan insurance providers were not too helpful when it came to resuming compression garments. So I asked an excellent private pay PT and her rule of thumb is to not wear any compression garments while the infection is clearly active (rash). When my cellulitis is treated at home via Keflex, I wait for at least a week if not the full 14 days of the Keflex before putting my garments back on.

But here is my issue: I tend to immediately gain weight when I get cellulitis. My latest episode in the last 30 days was no different. My arm and abdomen/trunk BALLOONED and I am so physically uncomfortable!!!! I tried researching lymphedema + cellulitis + weight gain and have come up with zero. I don't know what the heck to do about this problem. I am already fat so this phenomenon is very distressing.

Log in to post a reply

Mar 14, 2020 10:28AM BlueGirlRedState wrote:

SuQu31m - I seem to have chronic LE, goes up/down. From what I've read, compression sleeve glove seem to be the most effective treatment. Massage has some benefit as well as do compression pumps. Link for home self-massage. India Lymphedema Foundation, and Link to StepUp(trying to get lymphedema added to Medicare). One person who has LE in arms and legs rcommended this book "The Compete Lymphedema Management and Nutrition Guide" Jean Lamantia RD and Ann Dimenna PT CDT. LE has now suggested compression pump for home, measurements are always slight lower when she uses one in office. Fortunately my insurance has coverage for lymphedema treatment and supplies. Therapist has strongly recommended that I "stock up" as much as possible on supplies before I am on Medicare, because even if I keep my private insurance, they won't pay anything if Medicare does not, and Medicare does not cover lymphedema supplies/devices.

https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be

https://www.stepup-speakout.org/

Page 338 of 342 (10,241 results)