Cautiously Optimistic

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purple32
purple32 Member Posts: 3,188
edited June 2014 in Lymphedema

Hi all

I have to say - I've been on soooo many threads here , I just really didnt know the appropriate place to post this , so here comes a new one.

I hope KIRA and BINNEY et al, will see this .

I went to my LE appt. today and she does not think I have LE!
She measured the left arm and said there was even less volume than the right , but did note that is not unusual since I am dominant in the R hand.  I will know more next week when I got to Boston for  my BS appt becauise they took pre op measurements.

As for the pitting,  she looked and said : " You have fair skin!"

Why dont my rings fit AT ALL ? Well, I took notes (as Binney siggested) and  I had an O.D. of salt all that week ( as RX by my docs for my very low BP) She surmised that must be it and  again noted it should not have impacted BOTH sides if it was truly LE.  The gloves Binney suggested brought the fingers back to 90% normal....rings are just ' tight' now but technically can get on the fingers (  but are OFF!)

She checked out he breast.  She said it did look a tad bigger than the other but then she hadnt seen it beforehand.  She saw nothing to indicate LE.


I was highly impressed by her - a  14 yr survivor. 

She gave me handouts for MLD since I showed her how I was doing it from youtube and it was not good.  She also explained about the meticulous skin care needed which I have learned from you wonderful ladies.

Why am I not celebrating?

She advised a sleeve for strenuous or repetitive work.  I am FINE with that , but I dont see ppl on the other forums who have had no LE concerns wearing a sleeve, so I am wondering if maybe she saw a little something , but is not 100% sure.  (?)

I dont know anymore.

I can see I have freaked myself out to the max.

Anyway, this is my news - thats my story and I'm sticking to it.

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Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012

    Purple, just to put your mind at ease, a well-fitting sleeve and hand protection for strenuous or new activities and for travel are one of the risk-reduction recommendations that MANY clinicians recommend--because they've seen those kinds of activities result in LE for too many women. She's an experienced therapist, and you can bet she's seen that happen. The fact that you don't see other women taking risk reduction seriously is more a matter of no one ever having told them to.Frown

    No LE is great news!CoolKiss Go celebrate, for goodness sake! Chocolate, preferably--now, that DOES have research to back it up, straight from the New England Journal of Medicine:
    http://news.yahoo.com/eat-more-chocolate-win-more-nobels-210613093.html

    Heh, heh!Laughing
    Binney

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2012

    Great news, Purple! Definitely deserves some celebratory chocolate (entirely for its health benefits, of course).  Smile

    • The Mods

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2012

    Purple,  A full blown celebration to me includes a spa day...mani, pedi, massage (only on non LE areas), facial, and a good glass of wine!

    congrats on the good news, prevention is easier than dealing with the nasties

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2012

    Gosh I hope it's true for you.

    I really went up and down, my first LE who is pretty prominent here in NYC, was really convinced I did not have LE, and my oncologist agreed. They impedimence meter also said I did not.

    Turned out I did with a very odd presentation.

    I'm not saying this to rain on your parade, I really hope it's true, it's just that I remember feeling exactly like you did, but it didn't turn out how I wanted.

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Many thanks to all!  I so appreciate your kind words and enthusiasm for me.

    I see cookiegals post, and that is how I feel really- cautiously optimistic. I do believe you're not saying it to rain on my parade.

    Of course, I hope and pray I dont have it, but I have learned SOOO much from you ladies, and I will always fight the LE cause- even more so than the BC since there is no LE awareness as far as I am concerned ( or none in comparison) ...whether I end up having it or not.  In so many ways, I feel this is worse than the cancer itself- adding insult to injury if you will.

    I'll keep you updated after next weeks appt in Boston.  My fingers will be crossed.

    I appreciate  all of you more than I can say.

    THX mods!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2012
    Happy dance alert!Cool 
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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2012

    purple, I am so glad you took that post in the right way, in 2500 posts, that was the first time I thought, maybe I shouldn't have said that.

    At the end of the day just take precautions, if you infact have LE, it will make it's self known.

    Also though less common than everyone seems to think, trasient LE is possible.

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Of course not , cookiegal.  I know I would not wish LE on anyone, and I am still sensitive to the gals that have it, those who may get it, and myself  - who might fit in either category!

    THX


    PS  IF possible, call your local JCPenney hair salon ,.... free cut and style for OCTOBER, all BC pts/survivors!

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    UPDATE:

    I never did rush out and buy that chocolate.  Boston took my measurements yesterday and my arms are 2% upo. (RT arm is a tad larger too- is that "normal"?) 

    AND....My BS *finally* sees that ' area' under the nipple that I showed her 3 weeks post op. I forget the word she used.  It is LE vocab ( can anyone help here ?) Not pitting, yet I THINK it began with a P.

    Also saw that my rings do not fit and I weigh  a bit less since surgery date.

    Hmmmm...add it all together ?


    She said in 25 yrs she has never seen a single case of LE with someone with my profile ( NO rads, LX, 2 nodes SNB)

    I woiuld like to know if others with breast LE have mammos >? I cancelled mammo  for yesterday and scheduled to see  BS again in 6 mos ( I am only 6 mos out of surgery now) and have the mammo then.

    I no sooner left her office than I realized  " I wont want a mammo then either !"

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2012

    I think it is crazy that they say this, one node is enough. Truly I believe it comes down to the strength of your lymphatic system which has a genetic component.

    My arms got a little puffy before bc, so I kinda always knew it was coming for me.

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    You know cookiegal, I never saw it coming but I will say that when the LE therapist was looking at my left wrist she said : " Well, this looks a tad different' ( almost like a  tiny hump) but I answered :
    "Thats been like that for  a few yrs though"
    So, she dismissed it ( I had broken that arm)

    Maybe it should have been a red flag I would be prone to it. Sure wish they gave you the damn pamphlet/ brochure info or something!  ( but then that should be on the  GRRRRR!  forum  :>)

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