GRRRRRRRRR I HATE LE..........
Comments
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Just noticed my breast/ truncal is bad. I'm gonna blame it on having to wear the fancy bra last night...and being lazy about MLD when I got home....but could having enough compression on my arm be backing it up into my breast?
Glad I am seeing the NY LE later today.
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Am I too sensitive?
I live in an old house with not so great central air and the duct work in my bedroom is not very good and it's always about 10 degrees warmer than the rest of the house. It's been blazing hot here and my LE has been the worst ever. A friend bought me a window unit to place in my bedroom and he put it in for me. In talking with him, I told him that I felt like a handicapped person because of this whole LE thing. He scolded me today about saying I felt that way and 'reminded' me of all the things for which I should be thankful. Ladies, it really, really made me angry. The more I think about it, the angrier I feel. I'm not sure the whys yet ... but it makes me want to cry. People just don't get it. And it hurts when they say stupid things. I thought I was through all the stupid things people say ... but this one caught me off guard and it really hurts. Am I being too sensitive? I've already made up my mind to not tell this person anything too personal again ... ugh, but I want the ache in my heart to go away. And I want cooler temperatures too. I hate summer!
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No Dawne-Hope, you're not too sensitive...that was incredibly insensitive of him. I say, "Walk a mile in my shoes". LE can be very demoralizing; I think it's the chronic nature of it all. It gets me down. I know how lucky I am to be alive but I really could do without all of this.
I know I'm very lucky that my LE isn't on my dominant side. It certainly makes life a little easier but I'm still learning how to deal with it all and having issues with the sleeve/glove actually making the swelling worse. I've been away for a few weeks but have to go back to get my "custom" sleeve and glove replaced as they were totally uselss. It's very frustrating, so I say again, you're not too sensitive.
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Dawn-Hope, NO - you were not overly sensitive. Your friend was being an idiot. I hope it's not a permanent condition for him.
I have had several people say things like that to me since I got LE and I just chalk it up to stupidity, think 'bless their hearts' after I have a good rant (usually on this forum) and go eat a brownie or make a voodoo doll or something.
I'm trying to get de-sensitized to those kinds of comments. Morons are everywhere these days.
But you know, it does make me WAY more aware of what I say to people, so every cloud has a silver lining with an idiot hiding behind it, huh????
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Suzbelle, your sliver lining comment is too funny...made me laugh out loud right here on the train.
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dis·a·bil·i·ty (ds-bl-t)
n. pl. dis·a·bil·i·ties
1.
a. The condition of being disabled; incapacity.
b. The period of such a condition: never received a penny during her disability.
2. A disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area.
3. Something that hinders or incapacitates.
4. Law A legal incapacity or disqualification.The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.
I work under the assumption that there are degrees of handicap/disability. Dawne-Hope I think severe LE interferes with normal achievement and hinders and at times incapacitates. I agree that there are many more disadvantaged, I agree that it is important to keep perspective and realize how lucky we are at times. Not being able to sleep in a hot bedroom that makes LE worse, tired, hard to put on garments, more pain, limiting activities etc. You aren't being too sensitive, your friend was being insensitive.
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I know this is the GRRRRR thread, but have a GOOD experience I want to share. A few weeks ago, on this thread, many of you urged me to walk away from the therapist who told me that not much could be done for my LE and I should just accept that, over time, it would get worse. I subsequently cancelled my appointments with her. Inexplicably, my insurance approved my seeing her, and she called me up asking why I had cancelled the appointments. I was quite blunt saying that I wasn't ready to accept that nothing could be done, and I wanted as many tools as possible to at least slow down LE progression. She said that she was willing to try things with me, so -- somewhat reluctantly -- I went to see her.
After she examined me, she said that, even though my shoulder range of motion was good, she thought the top priority was working on the the scarring, fibrosis and cording that runs my upper arm down the side of my rib cage. (She accurately described the area as a mountain range.) It's been 2 years since my first surgery and a year since the axillary wound finally closed up, but she thinks it is not too late to make the area softer and improve functionality. She also said sometimes breaking up thick scar tissues improves LE.
I've only had two sessions during which she has performed myofascial (spelling?) release, but it is already less uncomfortable to raise my hand over my head and I swear I have more range of motion in my wrist. It's hard to describe, but my arm feels lighter -- kind of the way you feel light after you take off a heavy backpack. The area also looks flatter and less mountainous. I'm a happy camper today! KS1
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Dawne-Hope,
The sheer stupidity of lecturing you to look on the bright side is stunning. This is not a zero sum game here: the good things in your life to not negate the suckiness of LE and the disability it causes.
Just imagine for a moment that he was dealing with someone who had had a stroke and it left him disabled: would he chide that person for feeling sad about the limitations of his medical condition???
Or maybe he would: a while back I posted about the positive thinking issue, and the horrible pressure of it, and the psychologist said that people insist that we think positive and act positive because it makes them feel better.
http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04.jspf
Answer -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.
kira
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KS1--I had myofascial work on my shoulder and it really seemed to help. Good for you for speaking up to her
Kira
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Last summer (2010) I went to my Aunt's funeral in very hot weather. Even though we were indoors for the funeral, just going out to get in the car, the car to the funeral home and then the cemetary following the funeral - I knew would be difficult to deal with the heat. I used a soft frozen 1st aide pac, wrapped it in a small towel and wore in inside my blouse on my right chest area. This really helped deal with the heat. Since that time I have used this frozen pac in different circumstances when I know I'll be dealing with outside heat.
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Demoralizing. Barbara, that describes LE, absolutely. Dawne-Hope, I'm really sorry for that gut-blow. You're not being too sensitive, but I do hope you'll heal from it quickly. (A neighbor brought over German chocolate brownies today, and they have definite healing qualities -- wishing you a plate of brownies!
)"Disability" is such a confusing concept. If we're willing to claim we're disabled we can go to the front of the TSA line at the airport, and we can be the first to board. But claiming it (at least for me) is as difficult as being chided like Dawne-Hope was. A little over a year ago we got our first Service Dog for our disabled son, and the first time we went into Starbucks with the dog I was astounded that people actually got up from their table to let us sit down (there is a sign on the table telling them to do so for anyone "disabled," but I couldn't believe they'd actually done it). I have since had to learn how to accept "disability." Instead of stepping aside as you might if you were out walking your pet dog, you accept the right-of-way on a sidewalk and let other people move over to make room for you. When people try to pet your dog you say very firmly, "Please don't pet the dog -- he's working." In other words, you don't accomodate others, you allow them the opportunity to accomodate you. I don't find this easy, but it's worth thinking about. Those of us with LE require certain accomodations from others -- we can't stay out in the heat even to be sociable, we can't always help wash the dishes after a big get-together, we can't lift heavy luggage into the overhead bins on a plane. We need to learn not to feel apologetic, but to respect ourselves enough not to cave when they don't pick up on our needs. We need to be as calm and clear as a Service Dog handler, that we have our limits, but we also have some privileges -- and we need to learn to be comforatble insisting on them. JMHO
Suzybelle, don't ever leave this board, okay? We need your cogent comments on our dilemma. Stupidity as a "permanent condition"....ah, yes!
KS, so happy the therapist is rising to the occasion -- stay on top of her!
Donsuzbee, what a practical idea -- thank you!
Hugs all around,
Binney0 -
hi...so thanks for the referral to the NYC LE...she was great
So it is amazing how much less attention the black sleeve and glove get. Not a single comment all day.
I do have to pick outfits that look like a floating sleeve could be part of it tho.
I even went into the Prada store on Madison Ave, where I give them a lot of credit they were totally nice and said nothing. Someday I will buy something there on sale.
(And I was carrying a free Clinique bag as my purse)
Well it is back up into my hills and hollers for a week!
Have a great weekend.
Why don't they focus on making people feel empowered rather than "positive".
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Ooo, Cookie - I like that - EMPOWERED! Yeah.
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hi...I am editing this from work. I got the juxta-fit. It basically has the same effect as bandaging. I think my hand and lower are more swollen, just slightly, upper maybe a little better. Strange ridges make it hard to tell. I am going to see hospital LE on Monday. Maybe I should wear it for a few hours first!
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Cookie--I can't remember. What night sleeve did you get? Sorry you are not impressed. I ordered a jovipak and hope I don't have to wait as long as you did. Hurry up and give CPR to your computer! Becky
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Hi, I have been on vacation and thought of you all today. My daughter and I took a kayak/snorkeling trip and I didn't realize we had to paddle 2 miles. I had my sleeve and gauntlet on but I was thinking to myself - what was I thinking? Repeditive movements, lots of them......andhere I am already in the bay.... fortunately we were in a double kayak and my daughter who is 15 is a strong girl so I just stopped frequently and rested. We made it the whole way and my arm is holding it's own so far. The cool water helps, I just wore my sleeve while snorkeling. Now I have a fresh one on and did the massage and am resting my arm. It feels ok. So, it was a good thing - best wishes to you all. will catch up when I get back. you were all there in my kayak with me today!!
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Omaz, that's fantastic!
We have two single kayaks that I haven't used since I got LE: I keep pushing for a double.
Have a great trip, and it's wonderful to hear that you're able to get out there and enjoy yourself.
Kira
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That last line hits doesn't it? 13% could have been spared the morbidity of ALND.
Ann Surg Oncol. 2011 Jun 7. [Epub ahead of print]
A 10-Year Trend Analysis of Sentinel Lymph Node Frozen Section and Completion Axillary Dissection for Breast Cancer: Are These Procedures Becoming Obsolete?
Weber WP, Barry M, Stempel MM, Junqueira MJ, Eaton AA, Patil SM, Morrow M, Cody HS 3rd.
SourceBreast Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.Abstract
BACKGROUND: Recent results from the ACOSOG Z0011 trial question the use of intraoperative frozen section (FS) during sentinel lymph node (SLN) biopsy and the role of axillary dissection (ALND) for SLN-positive breast cancer patients. Here we present a 10-year trend analysis of SLN-FS and ALND in our practice.METHODS: We reviewed our prospective SLN database over 10 years (1997-2006, 7509 SLN procedures) for time trends and variation between surgeons in the use of SLN-FS and ALND in patients with cN0 invasive breast cancer.
RESULTS: Use of SLN-FS decreased from 100% to 62% (P < 0.0001) and varied widely by surgeon (66% to 95%). There were no statistically significant trends in the performance of ALND for patients with SLN metastases detected by FS (n = 1370, 99-99%) or routine hematoxylin and eosin (H&E) (n = 333; 69-77%), but only for those detected by serial section H&E with or without immunohistochemistry (n = 438; 73-48%; P = 0.0054) or immunohistochemistry only (n = 294; 48-28%; P < 0.0001). These trends coincided with an increase in the proportion of completion versus immediate ALND (30-40%; P = 0.0710).
CONCLUSIONS: Over 10 years, we have observed a diminishing rate of SLN-FS and, for patients with low-volume SLN metastases, fewer ALND, trends that suggest a more nuanced approach to axillary management. If the Z0011 selection criteria had been applied to our cohort, 66% of SLN-FS (4159 of 6327) and 48% of ALND (939 of 1953) would have been avoided, sparing 13% of all patients the morbidity of ALND.
PMID: 21647763 [PubMed - as supplied by publisher]
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Omaz, thanks for bringing us along on that amazing trip!
You're an inspiration.
Wishiing you many more adventures!
Binney0 -
KMMD--are they saying that they don't do intra-operative frozen section, and only go back if the more careful, final pathology indicates a need?
These ASCO abstracts always confuse me.
Only 13% reduction, if the more "nuance" approach is utilitzed?
Kira
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I'm trying to decipher this article. I think I can shed some light on things from my own personal experience. I had SNB and woke up to the great news that the nodes were negative. Less than two weeks later, my BS informed me that upon staining (I believe Fish something, maybe that is what is referred to as FS) I had a micromet in node. Unfortunately, I did not do more research and the new recommendations to not do AND for a micromet, were not in place so I went back for AND and they removed 9 more nodes, which were pronounced negative. Upon questioning my BS I asked if they stained these nodes (remember, my SNB frozen section was initially negative too). She announced that they did NOT stain these additional nodes, only examined frozen sections, never stained more than the SNB. Puzzled, I asked "couldn't these be positive for micromets?" She matter of factly said "absolutely, but the treatment would be the same, so we don't stain them". I am still quite perplexed at this seemingly confused aproach.
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kira, that was my take on it. They're doing less frozen section and more just H&E on permanent and looking at extent of disease and discussing with patients whether to go back for completion ALND based on the more complete path results. Interesting. Although, going back for a second operation has its own drawbacks.
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Designer Mom, that would be very frustrating, sounds like your situation is exactly the type of situation people are most likely to not do an ALND for now
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Designer Mom, when the study came out earlier this year that there was no survival benefit in ALND in specific women with T2 (5 cm or less) and 1-3 positive nodes, there were a lot of women on these boards--specifically this forum--who felt betrayed and upset as to why their nodes were taken, and Suzy started a great thread called "don't look back": that we made the best decisions possible under the circumstances.
In the three years since my diagnosis, I watched the approach swing back and forth--I've seen where the recommendation is to treat micromets like macromets, and also, conversely, to ignore them.
I've seen to radiate axillary and supraclavicular nodes just come out of ASCO for 1-3 positive nodes and other studies--and the rad onc I work for--say it's not necessary.
This is so important to us, and it's a moving target, and within the field, there will be differing opinions from doctors within the same specialty.
It's so damn hard.
It's hard not to look back, and hard not to wonder if you made the right decidions, but all we can do is make the best decisions we can at the time.
I agree with kmmd: it's so frustrating.
I'll bump the Suzy thread if I can find it.
Kira
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I agree that it all seems like a bit of a crap shoot. I really don't regret my decisions. Like you said, based on what I knew at the time, I made my decisions. I am not one to wring my somewhat puffy hands and cry "I could have, should have, would have". Onward and upward! May we all learn and get smarter as we go!
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thanks for all the inspiration here, ladies. i haven't been on the 'puter for a few days...
Binney; we have 2 service dogs (but they're tiny)only 5 lbs. each... everyone gets upset when we say "please dont pet them their working...but you get used to it.
i don't mind any of the questions about the sleeves, gloves, anymore, except the stupid ones. someone a long time ago used the line "sex injury.. lol and i DO use it when they're being obnoxious. have to say, since getting the new bi lateral in black (which i love and it works so well for me) that everyone thinks im making a fashion statement...
thanks, kira, for that link. i too, have to wrap whenever it goes over a point..its the only way to not get "mickey mouse" hand...
Quick question, ladies... GP was going on and on about fungal infections, and sleeves??? i get concerned cause i get Folliculitis which can lead to cellulitis.. have you any wisdom? never heard of getting fungal infections from garments... thNKS 3jays
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3jays, I just love the little-guy Service Dogs -- what a bundle of smarts they are! Our son's dog is an 80-pound Goldendoodle -- hard to miss, and the doodles are so teddy-bear-looking that it's hard for people to keep their hands off him.
On the fungal issue, I hope others will weigh in, but the way I understand it is, if your garments stay wet (damp) it could lead to problems. Mine do get wet occasionally during the day. I use a long-handled scrub brush for dishes, but even so it splashes sometimes and they get wet. Usually when that happens I take them off and toss them in the dryer on low for a few minutes. If I wear plastic gloves over them for even a couple of minutes my hands sweat and soak my compression glove, so I can't do that either. I live in the desert, so this time of year I can carry a spray bottle of water with me and wet down my garments when I'm out because they dry in a matter of minutes, but by next month when it gets humid I can't use that strategy anymore.
Nothing easy about any of this, is there?
Be well!
Binney0 -
I had the strangest experience last night and wanted to run it through you all. I went out in our hot tub (we dropped the heat so it was just warm) and soaked in water for about an hour. It felt really great, however, when I came in I took a shower and then my palm on my LE side began to burn and in a few minutes my other palm began to burn. This went on for about an hour and a half or two hours then just stopped. Any thoughts on what this could be? This morning my hands feel fine, no burning at all.
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Christine: I can't explain the burning palms--but sometimes my hands do become "hypersensitive"--we're buying a new house that has a hot tub, and I just figured it was off limits for me.
Jo-5: Daytime compression sleeves are not considered safe for nightime wear as they can twist and form a tourniquet and work best if compressing active muscle movement. Night garments, or wrapping are padded to compress a sleeping arm. Binney can explain it better--I'm sure
Wrapping is the "gold standard" but it is technique dependent and time consuming, so night garments were created to take the place of wrapping. Some of us do well with them, and some of us--like me, with the hand swelling--really have to wrap to get the reduction and inhibition of swelling.
Kira
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About the hot tub hand burning. I am wondering if it might be a reaction to the chemicals in the water? Since chemo, I react to things I never did before. I think it has to do with suppressed immune function. Just a thought.
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