LE not being treated

purple32

Hi all

Everything that I have come to learn about this so far seems to say that tx of EARLY LE *may* keep it stable.  Guess this just makes common sense with most chronic conditions.

Although I have been to the LE therapist twice now, I dont feel I am being treated.

The first time, she said NO---- NO LE.  As a cancer survivor herself, she did oder a sleeve for exercise and gave me an MLD handout which made very little sense ( hard to follow).  This LE is subtle. I do not fault her. Furthermopre, she did note anm area on my wrist that looks " a little different", but I pointed out that  , it has been  that way for several years. ( On my second visit she said maybe the wrist things was lipedema . She said you do not have to be obese to get that / I dunno'.  All I know is that it came a few yrs before the cancer and was just a tad 'puffy' or  slightly  larger to ME...no one else would ever have noticed at all)  I have injured that arm several times, btw.

ANYWAY...I digress. A week or so  later, I had an appt with my BS and  my BS said yes. She <finally> saw the LE.  Also, my olume was measured and there was a  2% change from surgery date so I got to go back to the LE therapist.

When I went in, I asked her to give me a demo and show me  what this MLD method was supposed to be like.  It was as though she never read it before at all. e.g .  She  too sid step 12 made no sense ( just skip it) and also remarked at all of the flaws in the instructions. Finally, I asked : " Don't you DO this ?"  She said NO- these are for you to do at home  ( which I knew) and I said :"  But arent you familiar with it/ havent you even read it ?

She said : " No, not really !"  I asked why  not, and she explained that none of her pts seem to follow any at home instructions anyhow.  ( wth ???!)  She said it was very frustrating to her.

I like this lady.  She  truly seems compassionate. She told me to call her anytime. She gave me the ( best?) instrcutions she had. My sleeve  and glove should be in next week.  My LE is not ( yet!) considered clinically significant so I cannot get PT.

But, what now >

I see why her patients doint do this MLD---they cant follow it !

What is the  " right/best DVD out there for this ?

Yes, I know about LeBed  and followed all the steps on youtube , but I mean for MLD.

What ELSE can I be doing to help myself *before * this prograesses ?
I feel like a person who needs to go on a diet who just READ and exercise and diet plan while eating a hot fudge sundae.

Knowing and doing are two differnt things.

Grateful for any answers- as always.

Binney4

Purple, how discouraging! And I'm sorry for this therapist too--sounds like she's simply given up. Unless you're prepared to mount a support campaign to prop her up and get her back in the game, I'd suggest looking further for a therapist. Even if it means a longish drive, even one visit with someone who's willing to treat you and advise you would get you on your feet and give you an on-going resource. LE is not a do-it-yourself project--a skilled therapist is more than a teacher of self-help techniques. When she uses her hands to do MLD on you she's assessing the state of both your skin and the underlying tissues, something she can track later on to judge how it's going with you.

What other options are out there? This gal, sweet as she is, just isn't in a place to help you at the moment.

That said, she's probably worth working on, if you can first get good care from someone else. Sounds like a LE support group might help rally people who want to take good care of themselves, and if you include the therapist in the planning she just might be encouraged enough to get back on track.

But FIRST priority is YOU! Who's the next-closest therapist?
Binney

purple32

Not close enouigh, Binney !

Maybe any other therapist would be the same in my case ( ?) considering I am sub-clinical.

Do you think ?

ALSO- I am sure my dr would not write another Rx just because " I didnt  like this therapist"  (yes, I actuially DO like her, but you know how they will take this )

UGH- another battle. I dont know.

dltnhm

I think there is more going on here purple than you not liking your therapist.

From what you have written here, she is neither presenting you with the preventative therapy that you need, nor instructing you clinically on performing mld yourself.

Your LE therapist should definitely be taking measurements also.

Not certain how long a drive you have - mine has been and is 60 miles roundtrip and worth every mile on our vehicles, every $$ for tolls and gas, and all the hours in commuting time to be taken care of by someone who knows what she is doing and is dedicated to educating and working with patients to prevent LE.

My team is all down there ... so that was my daily rad commute too. It was worth it!

Aerial

I'm sorry to hear about all the trouble you're having Purple.  I didn't know how blessed I was to have an oncologist who wrote out a prescription for PT right away!  I saw two different therapists and they both seemed very skilled and knowledgable.  Even though my LE is considered mild, I got a 30 min. treatment 3 times a week.  I was carefully measured every time and was given several options for ordering LE sleeves.  (I ordered a plain beige one and a decorated one).  They trained me to do the self LE massage, too.  Frankly, I don't worry about it much.  I wear the sleeve for air travel, and do the massage when I notice increased swelling.  So, far so, good.

purple32

Your LE therapist should definitely be taking measurements also.

She did take measurements on my first appt.

I called and asked to go back. There was no reason to take another measure within a week.

I am going to this on my lunch break!

purple32

, I got a 30 min. treatment 3 times a week. 

You're kidding?

OK, this doesnt seem right then!
I will be calling her back next week.

THX

Galsal

30 mins, 3 times weekly?  had 60 mins in one appt weekly

purple32

Galsal

was yours considered subtle/ mild during those tx ?

and for how many weeks ?

Aerial

How many weeks ?

THX to both!

purple32

QUESTION

OK, I may have been mistaken----unless this info is not current .  We'll see, but I *think* there just might be 2 more therapists in my area.  I still dont know if I will be able to get a new script etc ...but I want to " choose right " if I can.

One is VODDER trained ( opinions ?)

The other does not mention  Lana, Vodder or  ?   BUT does mention a support group.

This will most likely be ALL the info I have to go on IF I can even make an appt. based on that fact my therapy is considered

" done".

Any and all opinions much appreciated.  I guess I am mostly asking about vodder!

thx

Binney4

Purple, Vodder is a very well-respected, full training program. What you're asking for in a new script is a second opinion. Completely appropriate.

Here's information from StepUp-SpeakOut about questions to call and ask a prospective therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm#A_List_of_Questions_for_your_Therapist_

I think what we're all trying to tell you is that, yes, you're absolutely right in your instincts that the treatment you have received to date is inadequate and leaves you in jeopardy of worsening, without the tools to control your condition. Lymphedema is staged, just like breast cancer is, and if it's not treated it will continue to progress through those stages. Some of the changes are obvious (like swelling or cellulitis). Others are going on beneath your skin (like fibrosis, tissue changes, and abnormal fat deposits). The time to stop that is now, by gathering the information, treatment, resources and skills you need to manage it successfully.

Which is why we call our information site, Step Up--Speak Out!! Go for it, Purple--we've got your back!
Binney

hugz4u

Purple, As nice as your therapist is, judging what you wrote, I still don't feel confident in her. She should be able to teach you self MLD so you can do this at home. She should never have to use an instruction sheet to follow. This should be second nature to her. These are basic exercises that they learn in their certification MLD courses.

I have a Dr.Vodder trained mld girl that never treats me under 45 min. Mostly it is 1 hour or a 90 min. depending if I am learning something from her.  I am a light stage case with almost no swelling. Your therapist should also teach you to wrap incase of an emergency swelling episode, even if you are mild.

Tell your doc you need another recommendation to a different person because you don't feel comfortable with her. Every time a doc hears the words "not comfortable" they usually will get you someone new.  Don't forget to mention who you would like to be recommended to so they don't assign you to someone you haven't checked out.

purple32

 Every time a doc hears the words "not comfortable"...

Unfortunately, I think I may have used those words one too many times! 

e.g. Im not comfortable here ---I'll go to Boston.

Im not comfortable with arimidex and my osteopenia. I wont be taking it.

Im not comfortable with radiation with my lung disease.... I have to skip this.

At this point, I have  a BAD feeling, this is going to be frowned upon as one more leaf in a big pile of mess I have created.  We'll see.

Thanks for the enocouragement , Binney et al!

dltnhm

purple -

No such thing as "too many times" when it comes to seeking and obtaining the care that you need.

Your examples are not frivolous, change of mind situations ....

Your first example most likely had to do with the quality and level and expertise of care that you would receive.

Reading your second and third examples especially ... a medical care provider should and would have been investigating these with you ....because you had/have osteopenia and lung disease. Exploring your options with either of those was a proactive way for you to be an advocate for your health.

I reiterate ... there is no such thing as "too many times".

We're all behind you, rooting for you to get the best LE therapist!

Diana

Galsal

purple - it was Mild in the arm and Moderate in the chest.  after the mastectomy, went for eight weeks or more.  after the reconstruction, went for about four weeks since although breast incisions were made there was nothing in place following surgery due to the operation being aborted mid-procedure.

purple32

Your examples are not frivolous, change of mind situations...

Thanks, Diana.

I really needed that .

  It's true, my DRS have made me feel like a wingnut when in fact, I have really  been living in a whole new world of catch 22s with multiple health issues challenging tx.

I need some real medical guidance here and  although I dont know WHERE I would be without BC.org , I actually need med. tx .

I plan to call an MO ( mine dropped me since I refused the arimidex) and I think I can get him to write me  a new RX.

I will fight to get what I want and need.

Again...thanks to all of you .

I wonder how many ppl. you have " talked down from the ledge "  :>)

purple32

Thank you, thank you thank you to ALL!
I *think* I have found a great LE therapist!  I so needed the validation to feel LIke I am justified in going.  Recently, my right ( ''good" arm has had some swelling as well so even more concerned.

I put in a call to " my " LE therapist 3 days ago- no answer.  Put in a  call to new girl and she  did attempt to answer...we played phone tag several times over 2 days.

I spoke to her at length today.She was very kind and quite knowledgeable. She  knew the other LE therapist ( I expected this / nearby) and at one point she suggested I call the first LE therapist back and give her another try. I was all but convinced to and then I realized that call was already in and she hadn't gotten back to me in a timely manner. Also, I wasnt really confident in her.  Additionally, I am now have some issues with my good arm which is perplexing. I asked her if she was uncomfortable with me leaving the other therapist and if she felt a conflict and she said no...you have a right to care !  I said : " Then lets make an ppt."  ( We are on for TUES)

This new girl  explained right over the phone that I had measurable LE which is definitely already stage 1, ( since it is measurable)  She told me she would  spend 45 mins. showing me MLD. 

She also said she would call my DR FOR me.  (hello ??)
Later , she called me this evening to tell me she was having my fitter meet me at my TUES appt with sleeve and glove !!!!!!!

Many thanks all of you for your words of encouragement. I feel like this haqs bene ignored and allowed to progress.

I have never had anything ( incl. the cancer ) freak me out in this way.  I need help from someone competent and caring , and I could tell this girl knew that .

THX!

Binney4

Purple, LE is not in our heads, it's real, and it requires real treatment to get on top of it. Looking forward with you to TUESDAY!

Happy hugs,
Binney

purple32

Thanks, Binney ...if only it WERE in our heads ! 

BeckySharp

Purple--Hooray!  Now you can move forward!  I was in the same boat as you last year when Binney and Kira made me realize I had to switch.  What a difference it made.  I hope this new therapist lives up to your expectations.  Tuesday should be a good day for you!

purple32

Thank you so much, Becky!
At least I have hope now... which is a lot.

dltnhm

Thankful you found a new therapist Purple. Looking forward to your report after your first appointment! Hugs!

purple32

Thanks so much, Diana !

purple32

Here's my follow up:

Let me just start by sating that I LOVE my new LE therapist ...she is great!
She spent an hr and a half with me.  Most of it ws convincing me I would be okay wearing the glove and sleeve ( Its primarily the glove that has me freaked out )

I mentioned something about her ' hand holding' and she replied : " and I will keep at it as long as you need it."

(hello ??!)There's a switch!  When  I showed my surgeon my LE she merely said : " I guess you will have  to have your rings re-sized !"

My fitter came to the appt. ( I think they both know I am totally freaked right now) and she hugged me when she left. I almost cried. I have never had a  " cancer hug" , a cancer  card, cancer flowers, a canccer how are you  etc .. which is 100% my own fault, so I am not complaining.   I have kept this strictly confidential...and now " the world" as I know it , will know.

Enough of that crap.

Now, the Lymphediva blk. swirl sleeve is stunning ( I also have the lotus dragon tattoo) .  Too bad I cover the sleeve and what we see is the JUZO Expert glove( ugly beige )that I hate. It cost over $300. My ins will pay 80%.  C'mon with the  black gloves for gosh sake - its bad enough that gloves show !

I asked the girl :" The last therapist said I could just wear this for exercise but that's wrong. isnt it ?"

She said : " You'll wear it for 3 mos . sunup until sundown.  " Of course I knew, but my heart still sank.  Not only that , my husband is thinking we will be all set/done in 3 mos. I am thinking this girl is " breaking me in ", which is what I need actually.

She took baseline measurements.

She agreed with me that my underlying circulation issues most likely contributed to this .

 She explained a lot.  My husband was there the whole time.

The fitter was thrilled with the fit  and she loved the vented gloves- she said they were 'her first'.

I feel like I am in good hands.

She said to follow up in 10 days and she would  show me the MLD in more detail at that time...more of a demo.  She did  show briefly, but  it was closing time by then! ( She spent an hr and a half with me ) She gave me the handout and asked me to do it once a day.

Do most ppl do MLD in the AM or PM , btw ?

So, I am on the LE train.  I have been here awhile and knew it, but it is very official now.

I wore for only about an hr and took it all off.

The hand was  nearly back to normal.  I know.  I know it will rebound.

I should take this opportunity to thank all of you wonderful ppl who have helped me thus far. I have no clue how I am going to fight this and the social stigmas that I carry with me. I am such a ridiculously private person. 

But , all that's behind me now !

THX

Binney4

Purple, I'm so relieved that you've landed with someone you can trust. It's an important relationship and it needs to be comfortable!

Believe it or not, as closely as we tie LE to BC, the vast majority of people do not. If you suddenly appear in a sleeve and glove they are not going to think, "Aha! Breast cancer!" because they simply don't know anything about it. You know, I know--that's it. So the explanation you offer when asked (and only when asked) can be as simple and private as you like. No need to "confess" to anything you choose not to talk about. A simple, "It prevents swelling in my hand," is all you need. Nosier sorts can be handled by calmly repeating your answer--they'll get the message. Our garments are the same as those used by burn patients, so that's the "guess" I hear most often, and even that is rare.

So, yes, they'll see your garments and many will notice them. But, no, it's not an exposure of anything you don't want exposed. (Which is not to say it's not right there at the front of your mind--it is, but that's a different kind of pain, not so public.)

Who knows? Maybe someday you'll be out there with me grabbing people by their collars, waving your sleeved arm in their face and shouting, "Hey, listen up! I'm gonna tell you about LE and you're gonna listen!" But for now--or for always, if that's more comfortable--just take care of YOU. That's the point, and your new therapist has it right!

Gentle hugs,
Binney

Hildy910

Purple, that is great news!  I hope they take great care of you. 

I have h ad people think it's a carpal tunnel type of thing, and I just go right along and let them think that...

hugz4u

Purple, glad and happy for yah!

purple32

Many thanks to all of you! I SO appreciate the support and understanding.

My sleeve in the wrist area feels too tight so I could not break it in yet, but I did wear  a glove today. I didnt feel it would be right to wear something that REALLY seems too tight for 8 hrs.

(HTH do you ladies get these suckers on anyways ?!  )
So, I got home and asked the husband to help me put it on for  awhile to see if maybe its just because I am not used to it.

I dunno',. Wrist still feels too tight to me, but at least I know I have someone here who can help me yank it off soon if need be.  Last night, after less than hrs it made quite an impression in the wrist area ( like rubber bands) This doesnt seem right.

Glove is awkward, but I THINK it fits properly. Guessing I just need to get used to it. Works like a charm for reduction...then goes right back shortly after of course.

I do have  a message in to the fitter.

THX again.

Marple

purple~if it feels too tight keep very close watch and go with your gut.  It should feel comfortable not tight.  With new garments a couple of hours at first might be enough.  And keep checking underneath the wrist and at the top to be sure it's not making red marks.  I use a rubber glove to pull on my garments.

purple32

THX Marple...  The markes are there/subtle  but not red yet. I think the ' double compression" of the glove isnt helping. Other than the darn wrist the sleeve seems perfect.

I'll try to give it another 2 hrs , checking now and then as you suggest.

I would take the glove off, but I am concerned the hand will balloon. Thats is a problem area for me.

Yep, I'll be getting some Playtex gloves.

Also- my LE therapist said these gloves and sleeves need to be washed daily.

If anyone does NOT agree, pls let me know ----and why .

THX, ladies.

OneBadBoob

sounds like you are in good hands purple



jobst has some wonderful donning gloves, and the easy- as compression hose applicator works wonderful on sleeves. i cannot do a link on mobile but these products are on the step-up site under proper fitting of and care for sleeves and gloves/gauntlet



did your fitter show you the trick of putting your palm flat against the wall with your sleeve on and smoothing the entire sleeve evenly on your arm with your donning glove?