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All TopicsForum: Lymphedema → Topic: GRRRRRRRRR I HATE LE..........

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

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

Posted on: Oct 14, 2010 10:56PM

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
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Aug 9, 2018 02:38PM MinusTwo wrote:

Jo - good luck w/blood & MRI. We'll be waiting for your good report.

Varga - I had cording that was worked out by my LE/PT. It never came back so sorry I can't be more useful.

Hugz - exactly - pit & lat & tricep are ALWAYS tight no matter how much I stretch every day. Mine was caused by ALND surgery & rads for recurrent BC. And yes, just for fun it's also my right/dominant side.

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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Aug 9, 2018 03:58PM Vargadoll wrote:

I have had cording since surgery February 2017! For the most part it's not painful it annoying! I notice it more at night when I have it. When I roll over it wakes my up. I usually work most of them out myself.I need to read more and find out what is causing it to happen. I just want to be mindless and color!! Not read more about LE or BC. Seems that's all I have done for over a year!

"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 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 9, 2018 07:13PM JO-5 wrote:

Thanks to all of you and God bless you for your prayers.

I got through it. It lasted a little over an hour.......longer than I expected.

I was not on my back, but not on my stomach either. Right arm in a weird decive, laying flat...body turned about a quarter turn to the left. I did have a wedge under my knees....and a roll under my neck. I lay crinked up like that for the whole time. Probably be sore tomorrow.

They offered me music so I listened the best I could with all the banging and clanking to the Gaither Vocal Band. (My kind of music)

The contrast has given me a headache and some nausea. I am woosy and not very steady on my feet, but nothing I can't handle. I've had worse.

So glad it is over.....sure would not want to do that every day.

Now the wait for results...trusting for benign.

Thanks again and God bless. Love in Christ!

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Aug 9, 2018 09:01PM Vargadoll wrote:

thank you for letting us know Joanne! I got on here just to see if you posted hope the nausea lets up and the headache goes away. Get some rest tonight tomorrow's a new day!

(((((Hugs))))))

"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 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 10, 2018 04:55PM tsoebbin wrote:

Joanne I was checking in to wish you well on your tests tomorrow and see it's been done. Sending positive vibes your way for good results and a path to quick recovery! 🌻

I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 5/11/2016 Lumpectomy: Left Surgery 6/28/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right
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Aug 10, 2018 05:43PM MinusTwo wrote:

Jo - glad it's over and you're on the other end. Hope they don't make you wait too long for the results.

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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Aug 10, 2018 07:23PM - edited Aug 10, 2018 07:26PM by JO-5

Ok....Binney and all you LE Ladies I need advice and opinions from all or any of you.

I got the results from the MRI with contrast.

It said they found nothing concerning.

No absess (which we were not even looking for) the muscle and bone look good. No edema in the fat. No lumps.No thickening in the skin!

I asked about cancer and she said they do not say what it is NOT because they would have pages and pages. They said NOTHING CONCERNING.

I asked if it mentioned lymphedema and she said no .... it just said no edema in the fat. It was supposed to tell them if it was infection....and cellulitis was mentioned on the order. It said nothing about infection one way or another.

Ok, I have this area of swelling in my forearm and you can feel a thick place under the skin. It is dark pink when I use it.....goes back to almost skin color when elevated.

I asked if I should go to an LE therapist and the nurse said no....and don't do any massage until she talks to the dr. She asked if it was better

than when he saw it last and I said yes, but it is very very slow.

(He was not there when she called me.)

She told me, "Joanne lymphedema does not just manafest in one spot like that."

Do you ladies agree with that?

You've seen the pictures of my arm right after the fly bites, and the latest where it is better. Does that look like lymphedema to you? Would a good LE therapist be able to tell.

Since 06 only my upper arm has been swollen and lumpy. My lower arm had a little swelling but not much.

This is so disturbing. I am afraid if I just let this go and "watch" it the LE is just going to get worse!

This has never acted like cellulitis....4 antibiotics and 2 and a half months later could this just be inflammation from a fly bite?

In the last couple of weeks it has started that burning tingling feeling you get with an LE flare.

What would you do?

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Aug 10, 2018 07:32PM Vargadoll wrote:

Joanne - I guess some parts of that were good news????? I don't know enough about LE to offer an opinion. The one thing I will say is I don't feel there has been enough research on LE so how could the nurse say that?!? I wish ou could see my LE therapist! She's amazing! I've seen a total of 7 therapist who are LE certified and she always fixes me! I go next Wednesday I can't wait to find out abut the cording in my ribs and abdomen.

Lifting you up!!

"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 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 10, 2018 07:45PM JO-5 wrote:

Varga,

What I am hearing is... ".We don't know what it is.....but don't do anything to try to help yourself!"

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Aug 10, 2018 08:24PM - edited Aug 10, 2018 08:25PM by Binney4

Joanne, secondary lymphedema absolutely can manifest in one spot like that. And in fact that's a fairly common location for exactly that. And lymphedema is an inflammatory condition, so flaring like this from an insect bite is certainly not unheard of, as is a long-haul recovery, since obviously the lymphatics are part of the immune system, and they're seriously compromised. Women I know who have had this kind of skin reaction on their breasts can take months for the redness to fade, and for some it has never faded completely. The swelling, though is able to be controlled once it's treated.

I too wish I could share my LE therapist with you, and like Varga I had to hunt for one who could help with all the obscure (to me!) conditions that have popped up. It helps if they have some years of experience, because while the foundational training is critical, this is a learn-as-you-go career. Those of us with LE are a challenge, no question about it.

So, after the nurse gets the results to your doctor, get yourself to that new therapist you mentioned. Definitely time for some intervention, and hopefully if this therapist doesn't know what to do about it she'll be open to an informal consultation with other therapists in the area (if you know of any but they're not on your health plan, take their contact information with you so you can share it with her.) My therapist has a circle of local therapists who meet once a month to discuss just such dilemmas. Who knows, maybe you can start some helpful sharing like that!

Bottom line, since there was "nothing concerning" found, it's time to move forward with good LE treatment. Whew! Glad that's behind you--a blessing that it happened earlier than expected, too. Rest up, heal, celebrate the "nothing concerning" finding, and look forward to finally being free to attack this from a new direction.

Onward!
Hugs,
Binney


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Aug 10, 2018 09:05PM JO-5 wrote:

Binney that is just what my gut is telling me.

Now I have to get that therapist's name. If my dr really is opposed to it they might not refer me. I don't need a referral but I will have to figure out how to get her info.

I am just appalled at how little they know.

Any opinion on what I could be doing until then? Lebeds while being easy on my lat flap and graft.....massage but away from that area.

For instance I've cleared and just massaged my upper arm to stop the burning pain.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Aug 10, 2018 10:30PM Binney4 wrote:

Jo, those are good ideas for re-starting self care. But do it gently and gradually. One thing at a time for a couple of days and see how it goes. Node clearing is good to do before a shower, then both when you lather and when you dry, do it gently in the order and direction of the MLD massage. It's quick, easy, and doesn't involve any more handling of the area than would naturally happen if you just showered. (Did that make sense?!)

If you have more than one doctor any one of them can write a referral. Gotta get creative here! (Sigh!)

Really happy and thankful for the scan report--yes!
Binney


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Aug 10, 2018 10:49PM hugz4u wrote:

Jo seeing that you know more about LE that the whole bunch. You could try this. Rehearse some facts about le and why you need treatment( so I don’t swell and progress into a depressed state, etc. and they might get so stumped at their inadequacys that they might go ahead and sign you up for a le therapist referral. Sometimes when I go in with all the facts my doc recommends what ever I need as she knows I’ve done my homework.

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Aug 11, 2018 07:51AM JO-5 wrote:

hugz

Good idea. I was also thinking I will just tell him I need to see someone for the truncal LE around my back and under my arm from the lat flap.

The only other dr I have is my PCP, who told me not to do any massage or exercise and only to elevate.....and I seriously doubt he would even know who this new LE therapist is.

I'll get there. If I'm anything it's persistant.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Aug 11, 2018 12:11PM Binney4 wrote:

Jo, if you're looking for information to take to your doctor about LE, here's a page written especially for doctors, by a doctor with LE:

http://www.stepup-speakout.org/essential%20informa...

There's even a printable version available there to make it easier.

As for being persistent, of course you are! That's one of the prerequisites for qualifying to have LE--along with a talent for self-advocacy, amazing flexibility in adjusting to life changes...and a sense of humor. Also chocolate.

Winking

Hang tough!
Binney

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Aug 11, 2018 04:25PM JO-5 wrote:

Binney I will print that and take it with me when I go to my dr.

My dr is retiring in December and I have had a great relationship with him for 16 years. I believe that with God's help this man has saved my life more than once by quick action. He is head of the surgical department, head of tumor board, specializes in breast cancer and has spear headed the new breast cancer center at our hospital. In fact it is named after him.

He has always been very accessable and will get me in within 2 -3 days when I have a need.

He is old school.....doesn't think much of Lymphedema therapist. As brilliant as he is he says, "Sometimes they make things worse." (That might be true with the one I had in 2016)

I may not show him the paper because I want to part on good terms......but on the other hand I might give it to him because he will still be teaching and perhaps it could help.......but I'm betting he has already read it! Ha

So I found out the dr I will be going to is not only a breast surgeon, she is also an onocologist, and a staunch believer in lymphedema therapy and will be the head of the breast center. I will not see her until April unless I have a problem between December and April.

Have a good weekend and thanks to all you ladies for your concern and support.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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11 hours ago - edited 10 hours ago by JO-5

Binney, and All You that have supported me!

I have an appointment with an LE therapist, Monday August 27th at 10AM.

She is out of network, but my insurance pays out of network, except, instead of $40 co-pay each visit it will be $55. I can afford $15 more....just not several times a week, hopefully.

My dr's nurse called me this morning and said the dr agrees that I should see a therapist. She gave me some names and numbers and it has taken me all afternoon to get it all done.

I have no idea who she is certified with. I had so much to ask and explain that I forgot to ask that. (She cannot be as bad as that last one).....and I will know right away if she knows what she is doing.

The only thing I know is my nurse said another of their patients went to this lady and had great results.

I am so thankful and so hopeful this lady is the real thing.

I feel kind of bad because my insurance wanted to know why I was not going to the one in network. I told them. Then I had to give them her name.

BUT.....my nurse told me AGAIN today that they are getting a LOT of complaints about this therapist.

The nurse told me to be frank about my reason for not going back to her, and added that she would help me in any way she can.....but she was not allowed to say anything against that therapist.

Sorry but I just told the honest truth.

Thanks again to all of you, and I will let you know how it goes.

Meanwhile, my arm is still about the same......not any worse at all ....but still swollen and dark pink.

Joanne

PS......The MRI contrast did a number on me. Headache, nausea and vertigo. Headache was the day of....nausea and dizzy the next day.

Headache and nausea resolved....but still a bit dizzy!

Anyone else have this?

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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8 hours ago Binney4 wrote:

Joanne, I'm doing a happy dance here (well, and eating a chocolate whoopie pie to help you celebrate)!Nerdy

For goodness sake don't be sorry about speaking the truth. If the woman has any desire to become the best LE therapist she can be, she needs to know she's not there yet. It could make a huge difference to her career. Let's hope it does. And in the meantime, the fewer people she discourages and actually damages with her incompetence, the better. That, too, is an important outcome of the truth. (On the other hand, one of my favorite mottos is, "She who speaks the truth should have one foot in the stirrup.")

Hope the dizzies come to an end soon. Could be now that you're moving ahead with an appointment your anxiety level will be much lower, and that too could help with those sorts of side-effects. August 27 is a couple of weeks away, but what a relief to know there's help at the end of this struggle!

Rest up! Do something to celebrate!
Binney

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5 hours ago MinusTwo wrote:

Joining in the chocolate celebration !!! So glad you've found the name of a different LE therapist. As you said, you will know immediately if she knows what she's doing. I agree about resting up now. It's only two weeks.

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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4 hours ago JO-5 wrote:

Ok, I celebrated with 4 1 ounce pieces of chocolate!!!!!! Trying to stay away from sugar! Sooooo good when you haven't had any for a while! (Maybe just one more ! )

I will rest and it never occured that the dizziness could be anxiety..... but I took a little xanax and the dizziness got much better!

I called the nurse to give her the fax number for the referral and told her about having to tell insurance about the LE therapist.

The thing I did not tell you is that they insisted on knowing her name. My nurse simply said, "Good for you....You just helped all those that will come after you."

I still am so dumbfounded that a state of the art teaching hospital only has one breast cancer lymphedema therapist and she is useless. I had to go out of network to find one.

There is one at the YMCA located at the hospital but they did not recommend her.

They should send them to training or stop sending breast cancer patients to them.

Thanks Binney and Minus.....ENJOY YOUR CHOCOLATE!

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.

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