What did your doctor think your early LE symptoms meant?

Actually my RO noticed it in my post radiation 3 week re- eval and got me an appt. with the LE person in town (small town- only 1 person - thank God I like her), but if he hadn't- I only saw him one more time at 6 months post radiation. All he did was put my 2 hands and arms together and compare them - such a quick and easy informal eval. By the next time he saw me 6 months later, I would have gone untreated for 6 months unless someone in my MO's office noticed. I think everyone at risk or sigificant risk should have a baseline evaluation as part of their treatment plan. The RO's office told me about LE and gave me handouts, but it's not the same as the having baseline measurements and education from an LE trained therapist. That way you know specifically what to look for and have that contact already established if you need it.

Mine started with visibly significant body-wide swelling during chemo, with my node side arm swelling more than the other arm.  That was followed by classic axillary web pain.  If I went outside in the heat for more than 5 minutes the entire top of my hand was painful to the touch.  I had pain radiating from the inner bicep, down the arm coming over to the top of the forearm at the elbow, and continuing into the base of the thumb and top of the hand. It was like someone drew the diagram on my arm.  I asked my MO for a referral to an LE certified PT where I was properly assessed with stage 1 LE.  I did discuss these symptoms with my BS and he was inclined initially towards RSD, which I actually found more frightening than LE.  He wondered about this because of the issue I was having with the rapid onset of pain in the hand when exposed to heat, but post-chemo this resolved.

carol57 - I did have to advocate for myself in terms of requesting the referral and my MO initially referred me to the University of S. Florida's sports medicine PT.  I called there and asked whether they had LE certified therapists.  The answer was no, but the only NCI designated cancer center in Florida is right across the street from my MO office.  I called there and they were LE cert'ed so I just had the MO receptionist change the prescription from USF to Moffitt and I got right in.  I would never have known what I needed without the information I have read on this site, and I am thankful every day!  I have instructed anyone I have known locally who has been dx'ed to get those baseline measurements prior to surgery - seems like we are doing this the hard way - patient by patient, instead of something that is initiated institutionally as part of any breast cancer surgical/treatment pre-op assessment.

My breast surgeon was out of the loop with me after some time passed. I saw an occupational therapist who was supposed to know about LE, but she ignored my complaints all summer long (five months actually) until the last session, when it was as if the light bulb went on in her head and she finally heard me. She gave me 5-10 minutes of manual massaging and dismissed me.

I have been complaining to my family dr. and pain specialist for a year, but my family dr. had no idea that there was an LE therapist downstairs in OT/PT and the pain clinic has no clue (she is also not registered with the LE network), so I really had no where to go, seeing as I don't have a breast surgeon anymore because she moved from WI to Texas and I have no need for an oncologist.

I found this LE therapist by accident while I was getting PT for back problems, I was snooping around the informational cards and found this lady. She also is part of a Cancer Stepping Stones program that is like overall rehab for cancer patients for us to get back into a little bit better shape.

At least she is taking me seriously and acknowldges that I have mild LE. I have only seen her three times so far. She has not given me any information nor has she given me any exercises or massages to do at home.

I feel lost right now with LE. I know so much about my PMPS, and so little about LE.

I know that I had feelings of swelling since last spring/summer, sometimes i couldnt put my arm flat against my body. I had heavy and exhausted feelings in my arms. One time when I had a blood pressure taken on my lower arm, it felt like prickly pain and swelling for a week.

I have other feelings that are related to my nerve damage pain, I am not sure if LE pain is the same. Sometimes I know it is PMPS, sometimes I get feelings that I think are LE pain. For example, I feel like there are rubber bands are around my upper arms, or like there is a tight feeling feeling, sometimes a burning feeling. My LE therapist said she doesn't think the pain is LE, but I kind of think it is sometimes.

This is an excellent topic!!!

I had a sympathetic plastic surgeon who was getting ready to complete the reconstruction process once chemo was over. When he came in the exam room and noticed the sleeve/glove I had on he said "Oh, we don't like to see that" and was immediately concerned about my ability to play violin (going back into orchestra rehearsals and doing yard work were my initial triggers).

Prior to that, I had been graduated from several weeks of post-op therapy and had excellent range of motion, no swelling. Less than a month later, I was calling the clinic for LE eval & treatment. Learned to wrap, got a couple new garments but couldn't get the volume down much. My hand remains puffy no matter what I do. Water exercise helps a little. I'm also trying to lose weight...

Wore an Under Armour compression shirt to my internist appointment this spring - her speciality is cancer patients.  She later told me that she had shared that tip with others. Of course, I learned about them right here on BCO.org!    

I had one 'introductory' therapy appointment just after the DIEP drains came out. (Pre-op arm measurements had been taken prior to surgery)

The ALND was soon after that, then another 2 week interval until I was cleared for rehab. I went weekly for almost 3 months, getting massage and doing stretches also working with weights. It was a pretty good program but didn't prevent me from getting LE!   

Carol... my early LE presented with cording running from my right armpit down thru my lower arm....and I had pain when I tried to stretch my arm out....it was tugging as if a vine had grown! This was dismissed...and I called the office 4x and saw this BS 3x.... that this would all go away. I still have cording 2.2 years later, better but not gone.

Also I had chest pressure as in feeling very full akin to when your milk comes in after birth...I had Bilat MX... also I had fullness in my armpits.....also had swelling on the side of my right ribcage. When I pointed out all these things

1. My BS looked at my hand ONLY.... looking for the Dimer sign... dismissed any LE

2. When my BS looked at the swelling on my ribcage....he said " Well... thats just you"

I asked my BS how long he studied about LE? He said back in Med School..... so here I find I have a BS who is not current....med school was 20 some years ago for him.

I fired this BS. Was diagnosed by my LE/PT post op who sent her assessments to this BS.

I hired BS #2.... who is current in LE assessment/ management.....

Never in my wildest imaginings would I have to tell everyone here, that one of the top 5 criteria in choosing a BS is are they Current and LE Conscious!  Our entire Medical System is on the wrong pages...with many cracks. And we are the ones falling thru.

Long story short. I have Truncal LE. I am learning to live with a disability...

Blessings to you all

xo

brazos

I have gone up 2 ring sizes in my one hand, yet 2 doctors feel this is not LE, because I still have wrinkles on the back on my hand.

No wonder I am confused. I saw a lymphedema therapist and she diagnosed me with LE...same time frame.

I was very fortunate, the same surgeon who tells me I do not have LE wrote the prescription for therapy at the time of my mastectomy. I only had six sessions, but she taught me so much. And she was the one to diagnose the LE in the 2 year old mastectomy site, not the new one.

Interesting point, though, he denies LE but yet he sends every woman he does a mastectomy on for "LE prevention therapy".

He is a good man in his own way. At least he got me the help I needed.