I'm worried about lymphedema.
Comments
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I had all my lymph nodes
I had all my lymph nodes removed on the left and I have never had any lymphedema. Because I had 4 nodes + for cancer, my surgeon removed all that he could find. Not sure if they always do that now, but that was in 1987.
After surgery, I began walking a little each day and did the Reach to Recovery exercises every day as allowed by my doc. I wear gloves when gardening, but otherwise I'm pretty rough on that arm and, so far (23 yrs), so goog.
Please keep in mind that most of us write when we have problems, so you may never hear much from those who don't. My little sister had a sentinal node biopsy (but not all nodes removed) and she never had lympedema either.0 -
no problemsCypressCynthia said:I had all my lymph nodes
I had all my lymph nodes removed on the left and I have never had any lymphedema. Because I had 4 nodes + for cancer, my surgeon removed all that he could find. Not sure if they always do that now, but that was in 1987.
After surgery, I began walking a little each day and did the Reach to Recovery exercises every day as allowed by my doc. I wear gloves when gardening, but otherwise I'm pretty rough on that arm and, so far (23 yrs), so goog.
Please keep in mind that most of us write when we have problems, so you may never hear much from those who don't. My little sister had a sentinal node biopsy (but not all nodes removed) and she never had lympedema either.
i had all my nodes removed on my left side over a year ago i never have had any problems either.
teresa0 -
My Surgeon had a very
My Surgeon had a very different % when a large amount of nodes are taken out, 50% - 75& probability of some level of lymphedema.
I don't know how much my day sleeves and gloves cost as they are custome made and VA picks up the bills. I think they are quite a bit less than $400 per set. I have 4 day sleeves and 3 day gloves - one set is about 9 months old and the others are about 7 months. Only one set shows a lot of wear and that is because I always use the same set when I'm doing mowing or 'heavy' work with the horses, etc.. I've had my custome night sleeve a bit over 10 months and it's still in great shape - again I have no idea it's cost. When i get a new on i will have it made this time with fingers as the one I have only comes down to knuckles so a wear an Isotoner that has the end of the fingers out of it and designed for very light compression.
Having some issues now with it but I've never had pain - a tightness when swollen yes which is discomfortable but not painful at least to me. Others are different and some do have pain.
You will be taught to massage or you can have someone do it.
Hope that helps some - others will also give their experinces.
Susan0 -
Don't Worry!
There are 3 levels of lymph nodes. Usually the first time, they do level one in a lymph node dissection.
I had a recurrence with a tumor in the axilla. My surgeon removed the tumor and level 2 of lymph nodes.
He took a few out of level 3 nodes but there wasn't any cancer in these. Then I had radiation.
I have had four bouts of cellulitis in that arm. Mostly caused by a pin prick, paper cuts and a hang nail. The infections were severe enough to be hospitalized.
Until recently I was proud to say, I never developed lymphedema. I am 16 yrs out of diagnose.
At my last visit, my oncologist said, I did have lymphedema now. She measured my arms and sure enough, one was bigger than the other. No wonder the sleeve on the left side was always tight. I am not doing anything about it presently. Don't plan to unless it really does worsen.
I do have a full deep tear of the supraspinatus tendon in the rotator cuff on that side. Lucky me. I am going for a cortisone shot soon. I hope that my poor arm can take it.
I've flown without a compression sleeve for the last 16 years. There is no way of telling who will develop lymphedema. There is no time limit when the condition can develop.
It's to early for you to worry whether or not you will have lymphedema. Worry only when it happens.
Good luck to you,
SIROD0 -
Don't borrow trouble
Dear smalldog,
If there is one thing this whole bc nightmare has taught me it is this: worrying does absolutely nothing to make things better. Worry is borrowing trouble from tomorrow, you don't know IF it is going to happen. That being said, believe me I KNOW that saying, "Don't worry about it" doesn't help the worry, does it?
But please try not to ...
I'm one of the rare ones ... you're not supposed to get lymphedema with only the sentinel node removed ... but guess what, I'm one of the rare ones. It may not happen to you. The latest research suggests that the risk for lymphedema may be genetic.
The sleeves are NOT that expensive. I bought two sleeves last week and it cost just over $100 for the two of them. If you need gloves, those are expensive. They can run up to about $128 for ONE glove. I use the isotoner fingerless gloves that Rague mentioned and those are about $30 a piece.
Some that have lymphedema, yes it is painful. But not all experience pain with it. We're all different regarding the massage. I'm doing mine 2x a day to get it under control and that's extreme. You only have to do it as you need it. You will need to see a trained lymphedema specialist to show you how ... and then you can do it yourself. Some ladies have their husbands or significant other go with them so the LE specialist can show them how ... and they can do it for you.
Hang in there, smalldog. One step at a time.
Much love,
dh0 -
I have lymphedema
but for me it is not painful my arm just feels full/heavy. I have a sleeve that I wear but usually only if I am going to be doing a lot of physical activity. The sleeve that I have was about $100 and my insurance picked up most of that. I know that you can also order them online for less once you know the size. As for the massage part of it a therapist can teach you how to do it. When I went in to the therapist I took my husband as well and she taught us both how to do the massage. My husband insists that he does the massage for me every night.
Hugs,
Georgia0 -
Lymphedema
Hi Kay, I have been dealing with lymphedema for almost 8 years now and I too wear a sleeve daily. I purchase mine online for about $60.00 and yes if worn daily as I do they last about 4 to 5 months. Lymphedema can occur at any time after treatment, some folks get it and others never do so please do not worry yourself needlessly as it may never occur. In regards to the painfulness of it, well yes at times it can be painful but certainly not continuously and it is manageable. My best to you Kay you will be in my prayers as you approach your upcoming surgery.
(¯`•.•´¯) (¯`•.•´¯)
*`•.¸(¯`•.•´¯)¸.•´
¤ º° ¤`•.¸.•´ ¤ °ºRE0 -
worries
Not everyone gets Lymphedema secondary to breast surgery. I had only sentinal node removal with a cluster of nodes (total 6) removed during my Lumpectomy and I developed mild Lymphedema. I did not get the custom sleeve but was measured and received OT/PT for six sessions. I do the manual drainage compression every evening and as needed. I wear a sleeve and the hand piece (gaunlet) made by Juzo almost everyday and especially if I am flying or doing lots of physical activity.
Online, they are about $60 dollars and the gaunlet is about $20. They last about four mos.In hot weather I experienced pain however as the weather has cooled, I only experience occasional discomfort. My arm measurments are very close to equal now but my left breast remains swollen requiring my need for a large band and cup size in bras. It can be managed and it generally isn't a major inconvenience. At work, no one has been able to see the difference in the arm circumferences.
I know this is harder than it sounds but try staying in the moment. Worrying that you will get Lymphedema is using up energy that I am sure you can find other use for (like doing things you enjoy).I see it this way, if I worry about a brick falling on me as I leave work today, I will waste all of those precious moments that I could have enjoyed helping others.
Hang in there and take time to smell those roses and enjoy the sunshine.
Hugs, K0 -
Kay, I had a bilateral
Kay, I had a bilateral mastectomy on August 4th and had 2 levels of lymph nodes removed. I have not experienced lymphedema and don't want to!! As soon as I was able, about 4 weeks if I recall correctly, I started my aerobic exercises again. I notice that my left arm (BC side) actually feels better after the exercise. Like the others have said, don't waste your time worrying, hopefully you never have it. Good luck with your surgery.0 -
One day at a time
I had my surgery Sept. 09 had sentinel node biopsy only 3 removed all were clear Yes I have lymphadema it showed up 2 weeks after radiation started. Pain for me is not a problem just feels heavy at times. I have to wear the glove and sleeve it cost about $300.00 a set they do wear out in 3-4 months. Most insurance will help pay for them. I went to a physical therapist for a while they do teach you how to do the massage I do it in the morning than put the sleeve and glove on for the day it keeps the swelling down Mine is miner compared to other,but still a pain to deal with. So I really don't know if it matters how many nodes they take out. They told me my chances of getting this was 1% go figure. Don't worry take it one day at a time and sometimes one hour at a time. You are strong and will get through this. Good Luck my prays are with you. Cindy0 -
Perhaps wearing the same setGrandma X 6 said:One day at a time
I had my surgery Sept. 09 had sentinel node biopsy only 3 removed all were clear Yes I have lymphadema it showed up 2 weeks after radiation started. Pain for me is not a problem just feels heavy at times. I have to wear the glove and sleeve it cost about $300.00 a set they do wear out in 3-4 months. Most insurance will help pay for them. I went to a physical therapist for a while they do teach you how to do the massage I do it in the morning than put the sleeve and glove on for the day it keeps the swelling down Mine is miner compared to other,but still a pain to deal with. So I really don't know if it matters how many nodes they take out. They told me my chances of getting this was 1% go figure. Don't worry take it one day at a time and sometimes one hour at a time. You are strong and will get through this. Good Luck my prays are with you. Cindy
Perhaps wearing the same set every day, they do wear out in 3 - 4 months but I canot see how any one would only have one set to wear. Do you wear the same underwear daily? I don't so I don't wear the same garments day after day.
Sasan0 -
Oh my goodness
Who wants to charge you 400.00 for a arm sock? I pay 25.00(copay) company? Juno,zeus...lol.
I had 28/30 cancerous nodes and have mild lymphedema. I do my own massages. Elevate arm around 30 min to an hr. I am very bad at consistency, and still have mild edema. Kind of under the arm pit to elbow region. Please get a second opion, esp on the cost of the sock. See a professional for massage info. You can do it. I went to a massuse and she showed me.
Good luck and take care. Everything we do is almost forever sadly to say. get the best advice you can. Katz0 -
glove costKatz77 said:Oh my goodness
Who wants to charge you 400.00 for a arm sock? I pay 25.00(copay) company? Juno,zeus...lol.
I had 28/30 cancerous nodes and have mild lymphedema. I do my own massages. Elevate arm around 30 min to an hr. I am very bad at consistency, and still have mild edema. Kind of under the arm pit to elbow region. Please get a second opion, esp on the cost of the sock. See a professional for massage info. You can do it. I went to a massuse and she showed me.
Good luck and take care. Everything we do is almost forever sadly to say. get the best advice you can. Katz
The glove is the expensive part $225.00. I have lymphedema in my fingers,and I do have 3 sets I change every day but they still ware out and gloves get pulls in them I am using Juno's. I guess very one is different. I have a $250.00 deductible after that I pay 20%. I did not order on line I wanted to be fitted for the right size, they came to my home and they billed my insurance I had to do nothing was easy. As a matter I will be ordering 2 more sets this week since I reached my detectable. I may change brands. Good luck to every one and take care. Cindy0 -
My gloves are Juzo and IGrandma X 6 said:glove cost
The glove is the expensive part $225.00. I have lymphedema in my fingers,and I do have 3 sets I change every day but they still ware out and gloves get pulls in them I am using Juno's. I guess very one is different. I have a $250.00 deductible after that I pay 20%. I did not order on line I wanted to be fitted for the right size, they came to my home and they billed my insurance I had to do nothing was easy. As a matter I will be ordering 2 more sets this week since I reached my detectable. I may change brands. Good luck to every one and take care. Cindy
My gloves are Juzo and I haven't had problems with 'pulls' in the light compression ones that
I use for daily wear but the medium has some pulls/snags in it BUT it is the one that gets the abuse as I use it when bucking hay, mucking stalls, yard work, etc. and I'm not careful with it at all LOL - so it does get quite a bit of abuse.
Susan0 -
Kay,
We are in the same
Kay,
We are in the same placeI am scheduled for surgery on 23 Nov and and have been doing some reasearch as well as making an apointment with a physical therapist specializing in lymphedema. My surgeon suggested it, because he said the best way to prevent it is not to get it. I have a book on order should be getting it today or tomorrow, I will let you know if it is useful or not once I take a look. Good luck with your surgery. Patti0 -
Kay I had all my lymph nodes
Kay I had all my lymph nodes removed after a lumpectomy and I'm happy to report that so far there is no sign of lymphedema.
Worrying which is hard to avoid, actually does us no good. If we are faced with something we deal with it as it arises. Try not to worry even tho its hard not to.
I try to be careful with my right arm and treat it very gently.0 -
Lymphedema
My surgeon took 14 from left side. I have no idea how many are in there total. I had a lumpectomy on left side last April. Everyone told me to be very careful after surgery and not lift anything with that arm. I did end up with a very slight case and wore a sleeve and glove thru radiation. I saw a PT twice and have not worn the sleeve or glove since I finished radiation. I keep them around in case I ever get medical bills paid and can afford to fly somewhere again. I got my sleeve and glove from Discount Surgical and while they're not elaborate like some I've seen, it's all I needed and the two were under $100. total.
Be careful after surgery and don't use the arm for heavy lifting and talk with your surgeon about any exercises you should do. If you need radiation, ask about wearing a sleeve for that.
Good luck and it is possible to avoid a really bad case.
marge0 -
I just had the one nodeRague said:My Surgeon had a very
My Surgeon had a very different % when a large amount of nodes are taken out, 50% - 75& probability of some level of lymphedema.
I don't know how much my day sleeves and gloves cost as they are custome made and VA picks up the bills. I think they are quite a bit less than $400 per set. I have 4 day sleeves and 3 day gloves - one set is about 9 months old and the others are about 7 months. Only one set shows a lot of wear and that is because I always use the same set when I'm doing mowing or 'heavy' work with the horses, etc.. I've had my custome night sleeve a bit over 10 months and it's still in great shape - again I have no idea it's cost. When i get a new on i will have it made this time with fingers as the one I have only comes down to knuckles so a wear an Isotoner that has the end of the fingers out of it and designed for very light compression.
Having some issues now with it but I've never had pain - a tightness when swollen yes which is discomfortable but not painful at least to me. Others are different and some do have pain.
You will be taught to massage or you can have someone do it.
Hope that helps some - others will also give their experinces.
Susan
I just had the one node removed and never got lymphedema. I don't think it happens to everyone. Just keep an eye on yourself. Good luck.
Jan0 -
Oh Kay I feel so bad thatmwallace1325 said:Lymphedema
My surgeon took 14 from left side. I have no idea how many are in there total. I had a lumpectomy on left side last April. Everyone told me to be very careful after surgery and not lift anything with that arm. I did end up with a very slight case and wore a sleeve and glove thru radiation. I saw a PT twice and have not worn the sleeve or glove since I finished radiation. I keep them around in case I ever get medical bills paid and can afford to fly somewhere again. I got my sleeve and glove from Discount Surgical and while they're not elaborate like some I've seen, it's all I needed and the two were under $100. total.
Be careful after surgery and don't use the arm for heavy lifting and talk with your surgeon about any exercises you should do. If you need radiation, ask about wearing a sleeve for that.
Good luck and it is possible to avoid a really bad case.
marge
Oh Kay I feel so bad that you're worried. You are so sweet and I hate that. I am one who's had 17 nodes removed ( 8 infected ) and so far NO lymphedema. Thank God. Please just realize that we are all different. The doctors have to tell you about it, but you most certainly don't have to get it.
When I was about to start radiation my surgeon said to me, "remember that you'll be highly suseptable to lymphedema..I was so scared. Who needs that worry when you're about to go through 7 weeks of something else!
I do always baby that arm though. Left side lumpectomy. I never lift anything heavy on that side and am very careful when I shave that armpit. I also will never allow blood pressure or blood draws.
The sleeves are so expensive, I know, that's why I haven't bought one yet, but will have to if I ever fly.
My advise to you Kay is to always treat that side with tender loving care. That's what I do now, even if I feel like I could lift something and feel foolish when I say, sorry, I can't. Because I have heard that it can come at any time, even years later.
Hugs and hugs,
Wanda0
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