Does Likelihood of Lymphedema Go Down Over Time?

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.

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.

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.

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:)

A lymphodema specialist told our support group it can happen anytime. We always thought it happened instantly but not the case. The more lymph nodes removed the greater the risk.

Diane

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(!)

Medicare doesn't pay for compression garments

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.

https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/lymphedema/faqs.html

I fly with a sleeve and detailed instructions for massage in my carryon luggage. Just in case.

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.

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.

Sent you a PM

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.

Gokale. I've bumped up sleeve and glove thread of experiences of trying out garments