Posted on: Sep 26, 2017 07:49PM
I realize it never disappears, but my PT said risk goes down after 3 years.
Posts 1 - 30 (38 total)
Sep 26, 2017 10:47PM Kicks wrote:
Is your PT also an LET (LymphEdema Therapist) or just a PT that claims to know 'everything' about LE? If not, see an OT or PT who is actually also an LET for baseline measurements and education about what LE is and how to possibly prevent it from developing. Also how to do MLD (Manual Lymphatic Drainage) massage.
I've never heard that the risk of developing LE does down after any period of time - it is always there.
No - once LE developed it never "disappears"! We handle/manage it in the ways that work for us individually.
For me - my LE developed 9 weeks post UMX. I started weekly Taxol 3 weeks after UMX and 6 weeks into Taxol, my LE presented. Thankfully, I had Drs who actually were knowledgeable about LE (most aren't unfortunately) and got me in to see my fantastic LET guy (he's an OT) quickly.
Sep 26, 2017 10:50PM - edited Sep 26, 2017 10:50PM by Redhead2758
My sister finished her treatments 3 years ago. No sign of any issues. She just had neck surgery and bam....lymphedema. Apparently, surgery can set it off.
Sep 26, 2017 10:58PM ruthbru wrote:
This comes from LymphCare, which is a community of lymphedema patients and Healthcare Professionals. Hope it helps:
DOES MY RISK FOR LYMPHEDEMA DIMINISH OVER TIME?
You have a lifelong risk for development of lymphedema anytime there is damage to the lymphatics (i.e. surgery, radiation, or trauma). That said, the longer you go after you have damage to your lymphatics without symptoms, there is possibly less risk you will ever develop symptoms. Nonetheless, there is always some level of risk if you have damaged lymphatics. For instance, radiation therapy induced lymphedema often shows up 1-2 years after treatment, but can manifest even 10 years after therapy is completed.
It's important for you to remember that you always have some risk and occasionally patients will develop symptoms many years after the damage occurs. Because of this, it is a good idea to be diligent, know the signs and symptoms of lymphedema, and try to live by the healthy habits that may help you reduce your risk. As always, you should speak with your CLT about specific recommendations for you.
You might also want to review these helpful guides. Many of them are common sense approaches to living not only a healthy life, but to helping reduce your risk of lymphedema.
Maintain a healthy lifestyle: Eating a healthy balanced diet and exercising can help you keep a normal body weight, which can also significantly lower your risk of lymphedema.
Exercise: Before beginning an exercise routine, check with your medical professional or CLT. It's useful to gradually build up the time and intensity of your workouts to see how your body reacts.
Keep an eye out: You'll also want to monitor the at-risk area to see if there is any abnormal swelling, change in sensation, shape of the limb, soreness or heaviness.
Create a good skin care routine: Keep your skin clean, dry, and well cared for. Make sure to apply moisturizer to keep your skin from cracking, and wear sunscreen and bug spray when you're outdoors.
Know the signs of infections: Infections are dangerous for anyone, but especially for those as risk of lymphedema. Make sure to clean all cuts, scrapes, and insect bites when they happen and keep an eye on them. It's a great idea to keep a small first aid kit with you when you travel or are outdoors.
Protect your at-risk limb: Try to avoid injury to that area such as cuts, scrapes, or even needle sticks. If possible, ask your medical professionals to do blood draws or vaccines on the limb that is not at risk.
Avoid tight fitting objects on your at-risk limb: Try not to wear tight fitting clothes, rings, jewelry, or carry a heavy bag or purse on the at-risk side. This also goes for avoiding blood pressure cuffs on the at-risk side if possible.
Sep 26, 2017 11:31PM ksusan wrote:
I remember seeing a professional article that gave percentages for different treatments over time. If I can find it, I'll post it or a link.
Sep 27, 2017 12:10AM Jojobird wrote:
thank you all!! These are very informative.
Sep 27, 2017 09:04AM TWills wrote:
I've had no sign of lymphedema yet, I've went through 2 rounds of PT with a LET for cording twice but we didn't talk about lymphedema because I didn't really know what questions to ask since it hadn't been an issue. Now that I'm not in any PT I have questions about it of course. I'll be flying in a month, I have no idea if I should take precautions and ifso which of my many Dr's do I talk to about this?
Sep 27, 2017 10:39AM LeesaD wrote:TWills- with 14 nodes removed I would think you should wear a sleeve and guantlet or glove when flying. I would contact your surgeon, oncologist and PT office and see if they can give you the name of a lymphedema specialist. Or maybe google one in your area. My PT office only treats breast cancer patients so they gave me the name of mine who I see on a regular basis not that I've developed it yet but I do feel heaviness in my arm sometimes. The specialist is all about prevention and I was measured for sleeves and gauntlets which I wear when I exercise and they said definitely when I fly.
Sep 27, 2017 12:24PM - edited Sep 27, 2017 12:25PM by SpecialK
twills - I would advise you to address the need for sleeve/hand protection ahead of your flight asap. Most places in this area (my garments come from West Coast Brace & Limb - they are great there) will measure and order them, butit can take a couple of weeks. Depending on the length of your flight, I would advise that you wear the garments ahead of time to get used to them - increasing wear time each day. It is advisable to don them an hour before the flight, and wear them an hour after landing, if they're being worn preventively. You need a compression level recommendation from the LET, and any of your docs can write you a prescription. My insurance covers my garments in full.
Sep 27, 2017 12:57PM - edited Sep 27, 2017 12:58PM by TWills
Sheesh, you'd think I would have been referred already without asking. Did my Dr's just assume there would be no flying the rest of my life?? Why I am I not surprised?!? Maybe it was in that handbook that I never got or maybe I should hire someone to go through the mountain of papers and pamphlets and give me the run down of what I need to know, because I don't know what I don't know! Just another WTH moment. :/
But thanks y'all:)
Sep 27, 2017 01:17PM Denise-G wrote:
I have Lymphedema and do not know the answer to your question, so I find this interesting. That being said, over the 6 years of my survivorship,
I have met women who developed Lymphedema after 20 years, after 8 years, after 6 years, and after 25 years!!
Sep 27, 2017 04:09PM SummerAngel wrote:
From what I have read the greatest risk is in the first 3 years post-surgery, but as others have said, the risk never completely goes away. My PT told me that most of her patients who developed Lymphedema did so within the first year or two, but that the longest time between surgery and onset of symptoms was 40 years(!)
Sep 27, 2017 07:02PM LymphActivist wrote:
No, actually the risk of lymphedema continues to rise with time, although at a slower rate as time goes by. Roughly 75% is diagnosed after 3 years with cases recorded at perhaps another percent each subsequent year. But what is really important is that lymphedema is usually progressive--that is, once the changes start occurring in the skin tissue, even if there is no gross swelling, the condition will worsen with time. Lymphedema is an inflammatory condition which brings progressive structural changes to the skin. So it is important to start treating it early--before it moves to clinical stages when it is harder to reverse. See www.lymphactivist.org/review-z... and also Weiss R. Prevention of Lymphedema. J Amer Coll Surg. July 2013;217(1)168-9.
Sep 28, 2017 09:40AM SummerAngel wrote:
LymphActivist, you say that the risk rises over time, but that 75% of cases are diagnosed within 3 years. Those statements appear contradictory to me.
Sep 28, 2017 11:47AM ksusan wrote:
Stanford Medical says:
Do I have to worry about this my whole life?
The proper term to use is 'vigilance.' Stated positively, the primary risk for lymphedema development is in the first year following surgery and radiation therapy, when 90% of the cases occur. By the end of 3 years, 95% of the cases will have appeared. If you don't have lymphedema after three years of vigilance, the risk remains, but it is quite small. If you take the proper precautions and use the proper surveillance, the risk can be maintained as small as possible.
Sep 28, 2017 01:52PM - edited Sep 28, 2017 02:12PM by hugz4u
I'll just cut to the chase on this. Does it really matter what percentage of who or who won't get le?
For anyone wanting to play with risks.Why on earth would anyone play with the thought of maybe I will or maybe I won't get le. Vigilance is key here.
If your not proactive and you do get le you will likely will be upset at yourself because you threw the wrong dice and you will now be spending hoards of time, energy and thousands of dollars yearly likely out of your pocket. Yes I was vigilent which did stall le off for a few years but got it anyway. Those few years were so lovely and easy to be proactive as now taking care of the le beast is a job in itself.
Check out the kick butt thread and scroll thru my pictureposts and see what could happen when you cut yourself. I'm still in bandaids after 2 months of serious care and almost lost my finger.
Yes vigilance is key. Don't be scared be smart and educate yourself on le. We're here to help! :) and your all so smart already for checking le threads!
Sep 28, 2017 02:17PM claireinaz wrote:
I fly with a sleeve and detailed instructions for massage in my carryon luggage. Just in case.
Sep 28, 2017 03:28PM - edited Sep 28, 2017 03:29PM by SummerAngel
Actually, hugz4u, the percentages absolutely do matter to some of us. I'm a facts-based person, always have been. I make decisions based on knowledge of the facts. Knowing that obesity greatly increases risk of Lymphedema, I make sure to keep my weight down. Knowing that the occasional needle stick from an injection or a blood pressure reading on an at-risk arm hasn't been shown to increase risk, I allow those things. Knowing that longer-term needles like IVs can increase risk, I go through the trouble of having IVs put into my foot instead. Statistics matter to me, and I'd rather not spend my entire life taking unnecessary precautions, like wearing a sleeve for air travel when I have a very low risk. Is there still some risk? Yes, but that risk is low and I'm not a risk-averse person.
Sep 28, 2017 07:18PM Herculesmulligan wrote:
twills my surgery and cording sounds similar to yours. My pt says to wear a sleeve and glove on long flights. I took a short 2 hour flight and didn't wear it and later a long 7 hour flight and I did wear it. No lymph edema either time. My pt ordered them for me from a catalog called lymphediva and my insurance paid for them. They are quite beautiful (I picked one printed with Gustav klemt s painting "Adele ") but uncomfortable. The glove chafed my hand and the sleeve was pinchy and itchy.
Sep 28, 2017 07:36PM TWills wrote:
thanks, I asked at rads today and they said they'd contact my surgeon. I'm sure this will be a long drawn out process of no one knows who to send me to. Hopefully not.
Sep 28, 2017 10:15PM SpecialK wrote:
twills - you should just need a prescription from your surgeon for the sleeve/hand protection, and a recommendation from your PT on level of compression - then make an appointment with a fitter, I can help you with that by PM if you need it.
Sep 29, 2017 08:03AM TWills wrote:
SpecialK, I'll take any help you can give! I'm not cancelling the trip to see my son. I'm not in PT currently and it took weeks to get in both times I was referred before. I'll run out of time at that rate
Sep 29, 2017 08:22AM - edited Sep 29, 2017 08:58AM by SpecialK
Sent you a PM
Oct 2, 2017 08:53AM GoKale4320 wrote:
Anyone who wears a compression sleeve and/or glove - what brand do you prefer? I am looking for a good glove and I am curious to hear your reviews of the compression sleeves and gloves you have used.
Dx: January, 2017 IDC, Right, 1cm, Stage IIa, Grade 2, 1/23 nodes, ER+/PR+
Chemo: February 2017, Taxotere, Cytoxin
Radiation: June 2017-6 weeks
Oct 2, 2017 11:21AM ksusan wrote:
I find Lymphedeva most comfortable, but my PT wants me to use a different brand when flying, so I use Juzo. Juzo are reasonably comfortable but need to be massaged into place with a rubber-palmed gardening glove. They're stretchy and can form wrinkles. They're also a little long for my arm, so they come up beyond my wrist (we layer the gauntlet over it). I started with Mediven, which are okay but leave a waffle pattern on my skin and are itchier. YMMV.
Oct 2, 2017 12:04PM SpecialK wrote:
My fitter initially ordered Jobst for me, sleeves and gauntlets - bi-laterally. They seemed fine as I left, but when I started wearing them for short periods, working my way up to longer periods, both hands turned purple. I was able to even exchange (their policy) for another company, Juzo - same size and level of compression. No problems - I have been wearing this brand for five years, but occasionally the pad of my thumb gets numb. If I remove the gauntlet for a few minutes it goes away. In a full day of wear I do that maybe two or three times. I also have a Lymphediva sleeve/gauntlet, same size and compression, but the sleeve is a tad long and this set feels slightly tighter initially