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Topic: This is Overwhelming

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Aug 25, 2006 05:00PM

Brigrf wrote:

Dear ladies,
I just finished my final round of chemo yesterday (TAC) and go for my rads simulation on 9/11. My onc told me to go ahead and start exercising and when I said what about weight training and the risk of lymphedema, he stopped short and then said well, up to 8 pounds on each side is okay. I had 14 nodes removed from my left side, during a lumpectomy. I thought I would check out these boards, where I have been posting regularly on the chemo site, and I'm ovewhelmed by the depressing forecast for lymphedema. It seems as though all activity must cease, other than taking walks, with arms not dropped down at side. Is this true? I am truly depressed. Does anyone have any positive experiences or I am truly doomed to getting this awful after effect? sorry to be such a downer but I'm truly feeling depressed about what I've been reading here and the odds of getting this major pain in the butt condition.
Thank you for your help!
Brigitte Log in to post a reply

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Aug 25, 2006 07:10PM Biker54 wrote:

Hi Bridgette,

I had over 20 nodes removed over 2 years ago. I used to teach aerobics and weight train. I do have very mild LE and I wear a compression sleeve when I work out. I don't lift over 20 lbs. total when I work out. If I am using dumb bells, each one is never over 10 lbs. I still pick up my grandchildren (try and stop me), but I do try to be careful. I also think that you can't stop living your life! Don't do anything stupid (like me). Just try to be aware of what you are lifting. Don't load up your grocery bags, etc.

Good luck! If you think you have swelling, don't let it go. Tell one of your docs! You have to be your own best advocate!
Jan
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Aug 25, 2006 09:05PM fancy2 wrote:

I had an ax dissection in '95--14 nodes, all negative. Somebody mentioned lymphedema in passing but I mostly ignored it. It never happened, and I am a VERY active lady. I don't lift weights, but I keep horses, mover 40# bales of hay, carry 5 gal buckets of water and generally do whatever. I don't give it a moment's thought. So no, you aren't doomed. I think it must SEEM that way because the only women that post are those that have problems.

12/05 ILC 1C NX M0 2 yrs and counting Dx 12/16/2005, ILC, 1cm, Stage I, Grade 1, ER+/PR+, HER2-
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Aug 25, 2006 09:52PM Brigrf wrote:

Many many thanks for some positive feedback; this really had me totally bummed today ... I will be careful, for sure, but am not going to let this fear rule my life. AGain, many thanks.
Brigitte
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Aug 26, 2006 06:59AM roseg wrote:

I wouldn't change my lifestyle, but I would work up to higher weights and more active workouts gradually. I was off about 6 weeks after my surgery and the first thing I did was hurt my foot. Start easy and see how you feel. Warm-up and cool down is important.

I don't have lympedema at this time - fingers crossed. But I stay away from machines at the gym with swinging arm bars, like the ellicipal. That is too much repetitive motion, my arm gets funny feeling when I do that, so I don't.

Are you going to be able to come to the get together in Columbia MD this September?
Rose
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Aug 27, 2006 12:49AM NPat wrote:

Fancy2,
I am happy you have not had problems with LE and have been able to continue your previous lifestyle. The problem with LE is that it can pop up several years down the line. Lifting can cause LE to flair... so please be aware of any changes in your arms and trunk. I have seen LE in those without a cancer diagnosis... truncal and limb LE after a breast augmentation, limb LE from obesity or a hysterectomy, arm LE after pacemaker insertion, LE after a stroke, LE from trauma to a limb or an infected sebaceous cyst. We have posters on this board who have had serious problems after getting an infected hangnail or insect bite.

I developed truncal LE after helping my husband lift a bookcase... once... Yes, a lot on this board have had problems with LE and we post because we try to cheer each other on... LE plays havoc with one's body image... My LE is controlled (hand/arm/trunk)... but I now take precautions and wear my garments faithfully.

I am soooo happy many women can resume their lives after BC without getting "the gift that keeps on giving". There are enough of us out here dealing with it on a daily basis. It hasn't ruined my life... I won't let it!! Binney, is our crusader on the board and I love her for it... Since I am a healthcare provider, I am using my misfortune to make sure I talk to my patients who are at risk for LE about precautions and diagnose and treat appropriately those who have joined our "wrapped wonders club". Twice in the past week, I had patients come in with their before and after pictures showing the large limbs before treatment and then the smaller limbs post treatment.... They were ecstatic. When I saw their faces, I realized how much treatment had made a difference in their lives. One actually came up to us in a restaurant and showed off sandals she hadn't been able to slip on for years.

I am rambling.... sorry. I just don't want anyone to underestimate the LE risk and have to deal with the darn stuff later. I now see that through my experience I am able to help a few others but... darn it... I do wish there were no such thing as lymphedema... sigh...

Pat
NPat
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Aug 27, 2006 07:25PM Dawnt wrote:

I had surgery May 2004 & just have the signs of LE in the last month.My onco told me that a lot of woman see this problem between 2 & 2 1/2 yrs after surgery.I need to call next week to start therapy on my arm.

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Aug 27, 2006 08:55PM Binney4 wrote:

Hi, Dawn,

We haven't heard from you in a couple of weeks. Glad you'll be getting started with therapy soon. Do let us know how it goes for you and if we can be of any help. If nothing else, we all make a great cheering section, and we'll be here to cheer you on!

And Hi to Luckysmom too!

If you haven't already checked out the National Lymphedema Network's website ( www.lymphnet.org ), there's lots of information there that should help you prevent any problems. Also, there are articles at www.lymphnotes.com that deal specifically with exercise. I'm not sure where you got the idea that exercise was a thing of the past, but it's certainly not. Current thinking is that exercise is actually helpful. Swimming is great for this, but research shows that Dragonboating can be as well, and there's a study going on currently that hopes to show that bench-pressing, done with care and caution, can actually help both prevent and control LE. The key seems to be awareness, both of the risks and of our own bodies as we move forward.

In fact, what most of us here have found most overwhelming is the fact that we knew little or nothing about our risk for this and have not had the cooperation and care we expected from the medical community. So when we develop LE it takes an emotional toll. Unlike the bc, this can't be hidden, and it never goes away.

Current statistics indicate that almost 1/3 of us who undergo treatment for bc will eventually develop LE. Partly that daunting number comes from the GOOD NEWS that so many of us are now living long enough to develop it. And the other part of the good news is that there is treatment available to help us when it develops. With knowledge of self-care we can avoid most infections and get on with our lives.

So I'm sorry for your scare, but really glad you're onto the risk and willing to deal with it. It'll be good!

Binney
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Sep 5, 2006 01:20AM sherry7 wrote:

Hi all, been a while, this is still overwhelming to me at times and its five months now. I had my bc surgery almost a year ago and its the LE that has kept me from returning to working and a more normal life. It really controls my day, I am looking for help for the pain other than prescriptions... I do MLD, all the time, I know how, I am a massage therapist, its the emotional too that gets me. I use a walking stick at events where we are sitting around and such to prop my arm. I am only 50, this is all too overwhelming at times, my vision of myself at 50 was not at all what I have become, daily silly concerns and preventions....but I always remember, I am blessed, I am alive...

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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Sep 5, 2006 04:02PM Binney4 wrote:

Hi, Sherry,

Yeah, I hear you. I keep telling myself this is just a hard time of year, because it's the tail end of summer and I'm so thoroughly sick of being hot and fighting all that. But I too am grappling still with self-image issues I never even thought of. There are so many SMALL things I can't do, or can't do easily, or can't do for more than a minute or two. And door knobs are hard to turn because my glove slips on them. I drop stuff. I have to be careful not to get my gloves grubby. I'm sick to death of not being able to feel things with my fingers and palms the way I used to.

I too am thankful, mostly that I can keep the swelling (and consequently the pain) in control. But then I think: it takes 24-hour-a-day compression and all the time-consuming massage and exercises and trying to remember the deep breathing all day, so what's the difference? (For me, the difference is the pain relief -- but what a price I have to pay for that!) And then too, I have to fight with my insurance every couple of months over LE gear, I can't travel anywhere without wrapping up like a mummy (and I have to try to remember all the steps every time, too, since I'm not doing it on a daily basis), I'm watching out for salt in everything I eat, and I'm so tired of "sticking out" in public, and of trying to "explain" LE to indifferent people who wonder why I look like I do.

My biggest struggle is this: after my first mastectomy, and even after my second, my prosthesis fitter was so careful to make sure I looked absolutely, wonderfully normal. All sorts of measurements, more bra styles than I could ever try on, every size and shape of prosthesis, and I ended up looking fine. Just like "before." New hair after chemo, new makeup ideas from "Look Good, Feel Better," new prostheses -- SO MUCH compassion and effort from everyone to make sure I looked unfazed by a year of bc treatment.

Then along comes the LE, and all of a sudden the attitude is: here, wear all this stuff, exercise, watch what you eat, freak over mosquito bites and hang nails, no bra at all that I can use because of the location of the chest swelling/pain so I have a bulky vest that they can't even seem to get prosthesis pockets on -- and the attitude is, "Well, aren't you just so glad that you're alive!!!"

Well, sometimes it's plain WORK just to face getting up in the morning and getting out of my night gear so I can get into my day gear. Sometimes I simply don't want to appear in public at all. Sometimes I swell for no apparent reason and whatever I was planning to do has to be put on hold. Sometimes I try something that I'd swear was perfectly innocent and my hand swells, or my chest swells, or the pain starts in again. Even with all the fun and sheer work of grandkids here this summer, there was never a minute when the LE wasn't still giving me grief, making me aware that it's still running the show.

I talked to my therapist about the emotional issues and she (who has14+ years experience treating LE, knows everything there is to know about it, really is brilliant at it so I have no complaints) said, "What emotional issues? This is LE, it's not quadraplegia! This is just massage and compression! The only patient I ever had who had emotional issues over LE was a guy who had a billion other problems already, including drug addiction."

The one thing that keeps me going is the determination that NOBODY should have to go through this alone, wondering why nobody told them LE was even a possibility, and why when they did they never said what a bust it is. And that includes not just my bc sisters, but those poor folks with primary LE who usually don't find help -- or even a diagnosis -- for years and years. And who can't get insurance coverage for therapy or LE gear even when they DO get diagnosed.

So -- apologies to Luckysmom and anybody else who just happens on down here to this thread and is intimidated and made miserable by the prospect of LE. I usually try so hard to be upbeat and encouraging and to make sure everybody knows there's treatment for this rotten condition and how to find it. But frankly this is the hardest thing I've ever dealt with in my personal life (and I have not been hiding out, either -- my husband and I have raised 9 adopted children and two dozen foster kids, almost all of them seriously impaired physically or emotionally, and we have never shied away from confronting the issues of disease and disability).

But I simply cannot accept what a Black Hole of medical care this thing is, and I don't know how to make that public attitude and lack of awareness go away. Especially not when the stupid condition itself robs me of so much energy and activity.

Whew! -- I feel a whole lot better saying all that. It's been building.

Binney
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Sep 5, 2006 06:39PM NPat wrote:

Binney,
The emotional effect of LE is tremendous. I recently had two patients start treatment on their LE. They had had swelling for years but they were not diagnosed... so nothing was done except prescribe diuretics.... which make LE worse. Anyway, they are sooo happy that their legs are smaller than tree trunks. The change in their demeanor is amazing! I am fortunate that I was diagnosed rapidly... and I still get frustrated. I can't imagine having this for years and not be treated.

I am addressing this issue when I speak to a group of nurses on Sept. 26th. In fact, I have an idea!!! I will ask the question of the LE gals, "What do you want nurses to know about LE?" I will just copy the responses and give them to the atendees.

Pat
NPat
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Sep 6, 2006 01:49AM azdarleen wrote:

I have to agree, this LE is overwheling, I have had it since Jan 2006, and have yet been able to get it under conrol, about the time I think I do something else happens, so far I have had two infection ( one I was in hospital for 4 days) and now I have tendonitis in the same arm I have LE, I have been ran from Doc to Doc because no ones knows what to do with me, finally today I saw a orthopedics surgery and after a MRI I do have a partial tear of the common extensor tendon, surgery is the last thing they want to do, Today I received a steroid shot (yes I said shot ) in my LE elbow (talk about hurt) and yes I started anib a couple days before the shot.
I'm so tried of hurting, and not being able to get control. I feel like I'm spending all my days, going to Doc,or test.
Well thanks for letting me vent. I guess sometimes we just have to, and not keep it inside. I feel so lucky to have my LE sisters that will listen to me.
Thank you all.
Darleen
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Sep 6, 2006 10:21AM inspiewriter wrote:

<<<What emotional issues? This is LE, it's not quadraplegia! This is just massage and compression>>>

I try to remind myself of that too. So many people are suffering so much more.

Doesn't always help me feel better, though.
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Sep 6, 2006 11:21AM AmryAnn47 wrote:

Yep,
As I have said before--the LE has been much harder to deal with than the Stage IV cancer & bone mets. I can get away from thinking about them but the stupid LE is there 24/7 interfering with everything I do !!!
Mary Ann Dx 4/11/2011, ILC, 1cm, Stage IV, Grade 3, 5/10 nodes, mets, ER+/PR-, HER2-

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