GRRRRRRRRR I HATE LE..........
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I am interested in your post. I had BMX, no nodes, 1.5 years ago. The day after surgery I went for a walk. While walking I noticed my right little finger and ring finger felt slightly like they had fallen asleep. I assumed it was some odd effect of the healing process. My right side had some areas of numbness in the underarm area, just below the armpit at the level of the incisions and along the webbing of the armpit, on the edge where my arm meets my back. This was very pronounced after surgery. My left side never had any of this. As time went on, I regained most of the feeling in my right underarm area. The webbing is about 90% of normal and there is a spot, maybe the size of a quarter that is still numb below my armpit. Doesn't bother me at all. The "falling asleep" feeling left my two fingers also. I have no signs of LE that I can tell. I think mine and maybe yours is nerve damage?
I disagree on what you have been told on blood draws and BP. I believe you are at risk due to the sentinel biopsies. They tell me I am not at risk as I had no nodes out, but I am so paranoid I have never let my docs do my BP on my arms. I did have a blood draw, I was scared, but nothing happened.0 -
Another here with bilateral lymphedema after having a single node removed on the left and a prophylactic mastectomy with no axillary nodes removed on the right. There are several of us here with that experience, so knowing about the risk reduction precautions is helpful. (Beacon, if you prefer, blood draws can be done on the feet -- no more painful that the arm, but you need to have a doctor write "Draw from foot only" on the order.)
Best bet is to get any doctor on your team (even your PCP) to write a referral for an evaluation by a well trained lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
And here are two sites with reliable risk reduction information:http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
http://www.lymphnet.org (see their Position Papers on risk reduction, air travel, and exercise)
And finally, here's a page of information written (by a doctor with lymphedema) specifically for doctors and nurses. You can copy it off and distribute it to all your healthcare providers.
Hope some of that helps. Be well!
:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Binney0 -
this morning I went to Stanford Cancer Center for a routine blood draw. When I met with the phlebotomist, I told her I had BMX, but no nodes out and I wanted a baby fine needle and no tourniquet. Draw from left arm.
She was so sweet, trying to be helpful to me. She drew back, as though she was not going to do the blood draw and solumnly asked if my doctor had given me permission for the blood draw from the arm. She was trying to proactively protect me from lymphedema. So sweet.
I told her that yes, every doctor I had talked to, and I have talked to very, very many, tells me I am ok for a blood draw from my arm. I am far more concerned than they are. Anyhow, we did the blood draw. If it makes LE, I will let you know!
What a sweet and well informed technician I had today
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jo -5 - Grrrrrrrrrrrrrrr! (c:0
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why do all these damn doctors make lite of lymphedema/edema?????????
all of them say its nothing to worry about.....
so why am i sooooooo scared shitless if its nothing.
what are we supposed to explode before they say AH yes you have it...
IM IN A BAD MOOD TODAY.I HATE CANCER.WHERE IS THAT DAMN VACINE?????
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grannydukes, when they say "it's nothing to worry about" I remember the dermatologist who dealt with a wart my daughter had next to her mouth, He was going to remove it with cryosurgery (compressed gas freezing it off) so she asked if it would hurt. He said, "Well, it won't hurt me".
That's what they mean. Nothing for them to worry about.
Leah
P.S. My daughter was 16 at the time and LOVED his answer.
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thanks Leah----wonderful answer from a dr.couldnt expect anything better.I wonder what he would have told his wife/mother/daughter or grandmother.....yea he has personality but cryo does hurt.i had it.more and more the white coats are pissing me BTW my great granddaughter who was born on St.Patricks Day was named Leah...love that name.
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I am so glad I had a Dr. that knows about and sent me for help asp. I wish I had a clinic as good as Kira's and Benney's but I don't. If I have problems I have to go back to my Dr. for a referral. Oh joy. A big waste of time and money.
Well I am still swollen and I woke up with a bad cold. I questioned back in the fall if my sinus allergy problems might be a trigger...It just might be. Who knows LE is so unpredictable.
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Thanks to Dawne-Hope, Beacon800 and Binny4 for sharing your exeriences and for the good links. I found a lady on the LANA site who seems fairly close to me - considering this is Houston after all. It's possible that my TE is resting on a nerve - but what tests would show that? It makes sense to me to consider an LE specialist before I go to a hand surgeon. Thanks to you all.
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i have an oncologist, BS and PS tell me no worries about LE.. i finally got the onco to "humor me" and write for le eval. i have hand, and truncal LE. Now, i've learned the majic words for me are "humor me" hahaha thanks, Binney, for saying a foot draw doesn't hurt anymore than the arm/ hand, cause thats' what ive been avoiding them for.. are the ivs the same, do they hurt just the same? only know one woman who has had that.. but i had lymph nodes removed on both sides, pos. on one side...
i haven't gotten my silver wave from lym/ sleeve co. yet, but its' been shipped, and im sooo excited!!!! gonna try the black, and if it works ok; gonna order a lighter one, also. can match all my fashions!!! next, onto gloves we go!!! 3jays
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Saw my RO today, took her the Insurance company papers and she was thrilled that I fought them to get this Board Certified LE specialist to be able to see me out of network.........She said "good for you cutie, I'm glad you put up a fight"..................Now the papers, signed by her will go back to Aetna, and they should approve me getting "out of network care".............There are certified physical medicine specialists very close to me, but they are not Board Certified in LE.........I'm not shitting around with this arm, and I too was told "its ok, don't worry about it"........Well guess what Bucko..............this is not you friggin arm............I wait, and then it gets so big a monkey could recoginize its LE, that is not going to happen......not now, not anytime.......I will get my BCLE specialist.
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duckyb1 - You GO, girl! woohoo!!!! Fight on, sister, fight on!!!!!0
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duckyb1- good job! I think each one of us who fights will help the next in line.
I am just home from the hospital, monday Proph MX. I feel good. I only used the morphine the first day and am on tylenol since. I am tired now though so up to snuggle on the bed for a bit.
Please accept my thanks for any healing thoughts or prayers from one or many, thank you.
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Ladies...........my feeling is.........fight for what you want from insurance companies..........if in the end I lose, well at least they knew they had a good fight on their hands, and if more of us stop letting the insurance companies make the rules and push us around without any complaints they will continue to make more rules, and more restrictions.
I gave it a shot.........hope it works out.......my coordinator from Aetna called me today and i told her what I did, and what I want from the insurance company, and she said, I will keep my eyes open so if I see it too, I will act on it on your behalf........
Hope it works for me.......will keep you all informed.
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BarbaraJo, welcome home!
So glad that's all behind you, and prayers for continued healing and rest. YES!
Binney0 -
Just wanted to share this with you girls as i am so excited.
Had my bio impedence done today with the L Dex ... not sure if you have the same tool for measurement as us in Australia .At my worst my score was 28. I have had a month of intensive therapy back in November and since then have been doing a lot of self massage, exercise, bandaging and now using my Carisa garment.
Had my measurement done today and it was 14... OMG i'm so thrilled.
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Good job kerrie. Had a nurse look at me yesterday and say "your arm doesn't look that bad." I just smiled and we went on because I wasn't up to dealing with it yesterday. But, I wanted to say really, because it doesn't feel that good, and I get pretty tired of all the exercising and therapy and garments required to keep it looking "not that bad"
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Kate, Binney and I were exchanging emails last night: I expressed how low my frustration tolerance is for all things right now, and she said that LE is a constant, low grade--or high grade--irritant and can erode your sense of equanimity and cause constant frustration.
I'm fed up with everything and everyone right now, and it doesn't help that I have, as Suzy says: "Obeses, assess and compress" every day.
And tamoxifen isn't helping either--I'm either dealing with LE or some gyn abnormality....or uber PMS
Kira
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(((((HUGS KIRA))))
Without a doubt, I think the tamoxifen has a lot to do with your emotions. I hated taking my little gold pill....Femara. How in the blank am I suppose to loose weight when I hurts so bad to get up and down. My right knee kills me and I can't even put weight on it as in kneeling...not even on the bed. My fingers are doing the same thing now. I can't even pull up the sheets at night without it waking me up in pain.
So with that being said...what are my risk for getting that cortisone shot in my hand. I can't take both hands having trigger finger and they are both the middle finger. The LE side is the worse. That joint now hurts to even touch it. Looking for the good in all this. At least typing on the keyboard doesn't make it hurt worse yet.
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With all the other shit we had to get fuc--ng LE too...........I am so fed up it isn't funny......mine isn't even that bad yet. I can't imagine what its going to be like if it does get worse. Right now I have this friggin aching in my right arm and it does feel swollen............I am so fuc--ng fed up with it all I am ready to say "whatever happens happens, and I haven't even started the friggin Femara yet, and I may fight taking that shit too........Tell me about quality of life....................I feel like I have a constant toothache in my arm today, and I'm pissed off big time........sorry ladies, just disgusted.
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duckyb1 - rant away! we get it and we know.
i've noticed this spring with all the crazy, stormy weather that when there is a front moving in and a big temperature difference I hurt really bad. I've started noting the barometric pressure and watching it ... when it dips and rises ... I hurt and swell. I say this as to give you a possible 'why' on the pain. Kira has noted before that part of this LE crap that makes it so FRUSTRATING
is we can't put our finger on why we're flaring, why we're hurting when we've done everything 'right.' Hang in there! 1-2-3 GGGGGRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!
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Just wish I could get my head around why the depressive state today.......I should consider myself lucky after reading some of the stories on her......at least I'm an old lady who has lived her life,and should be glad I'm not 30-50, still raising a family with little ones at home. I feel very ungrateful when this happens, and think to myself "you will be punished for your lousy attitude", just buck up, and snap out of it.............Be glad your alive.
This is so unlike me, I just can't understand it..............Just want it all to go away
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Thanks Jo-5.......just told the other girls on another forum I ranted on ........I put a "belt",and "suspenders", on my "big girl panties"...............they kept falling down today, but I"m good now........Got some hugs from my favorite ladies, and my "big girl panties" are staying up . , I'm gonna be okay............thanks ladies, and hugs back...........
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"Some days are diamonds, some day's are stones." Some days LE seems manageable and some days I feel such frustration and anger over it. Of course we are grateful for whatever and of course one knows others are worse off however, that doesn't diminish our own reality and it's okay to feel crappy over it without feeling the guilt of seeming to be ungrateful for the blessings in our lives. Sometimes we just need to let off steam and have someone acknowledge that they understand because GRRRRRRRRRR WE ALL HATE LE!!!
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For all of us grumpy people: an ask the expert on bc.org, I've always appreciated it: It's about attitude and recurrence, but I do like her explanation about the NEED to be positive that is imposed upon us:
http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04.jsp
Rosalind Kleban, L.C.S.W.:
I am glad that this question was raised, because I'm sure that is on the mind of the majority of people. It is a very popular notion in our culture today that if you have a positive attitude you can get rid of your cancer, or that you never get it or that it doesn't return. If you think about it, that notion is truly an oxymoron. An oxymoron means two things that don't go together-like "jumbo shrimp." The reason I call it that is to think about telling somebody what is the worst news of his or her lifetime and then ask them to be positive just doesn't make sense. Having bad feelings and down days is neither good nor bad-it's just normal. The only people we ask to have a positive attitude at all times are people who have had cancer. I can be miserable all day long and nobody is going to reprimand me about being positive. You only 'have' to be positive if you have cancer.
Having that philosophy or notion or belief is like living in tyranny. What it does to you as a patient is that on days that you are down or depressed or sad or anxious or worried-which is normal-you will feel even worse because you have accepted the notion that those are bad feelings. You need to work hard to get rid of that notion. It is not fair. It is putting a burden on the patient, while it serves many good purposes for the people who are saying it. If you are going to be happy and positive all of the time, then I don't have to worry about you. It also leads me to believe that if I am positive I will be fine. The philosophy serves everyone except the patient.
You need to know that people will tell you that you need to be positive. You need to be prepared in how to handle that comment coming at you, and that is something that you want to do in a way that is comfortable for you. What I think works is that when someone tells you to be positive, suggest they walk in your shoes first. And inform them that when people speak to you that way, it's really not helpful. You need to protect yourself as much as possible from that theory because it is burdensome and hurtful. A bad attitude will cause only one thing and that is a bad day. The best reason for having a good attitude is that on that day you will enjoy yourself. But neither the good nor the bad attitude will affect the illness. It will affect the quality of the day that you are having.
Your fear is just the natural outcome of having this diagnosis. It will not cause the cancer to come back. I work with a thousand women a year and I have never met one that doesn't suffer from fear, either enormous or very enormous. It's normal. Not bad, just normal. It will have no impact on the course of the cancer.
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My RO took one look at me yesterday and said edema....and he also said large breasted ladies tend tend to get it from RADS...well finally someone did not say its nothing....why dont these damn Drs. think alike.BS said its a little swollen.internist said its nothing.And they expect us to listen to them..well doc why dont you get YOUR ACTS TOGETHER?????yeah im in a ranting mood.after he pushed and pulled under my arm it hurts.a lot.damn.can you tell im mad??????0
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I'm positive all right.................positive I hate LE.
Kira, what you quoted is SO true.
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Kira, thank you for reposting that here. We all need to read it and reread it.
I have a relative in dh's family who would occasionally pull the "think positive thoughts". Drove me nuts. Then when I got the mets dx she said "I will think positive thoughts for you". Well, OK, that's better.
Ducky, c'mon here under the bed with us. We're eating brownies.
Leah
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thanks for posting that Kira
Jo thanks for making me laugh.
I will keep on with my Femara but it want be without a complaint here and there. I was just on the Femara site reading about the side effects again...not the one they give you but the one that is for the pharmacy....gee I didn't know it can effect LE. uggg Quit reading. Never found anything saying it causes trigger finger but there are too many on the board who now have it.
Okay done for my rant. I did manage to sleep with my tribute and jacket on all night. A first in a very long time. My goal is to keep the tribute on and throw the jacket off when I get too hot first and then when I can't stand it the tribute comes off. Hey I have to sleep. lol I have an 8 year old to keep up with.
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okay Sharon...that made me really laugh hard till my girl asked me what was I laughing about.
((((HUGS GRANNY)...they do know how to make us hurt it there probing.
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