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How long should I worry about developing lymphedema?

Tamlen's picture
Tamlen
Posts: 281
Joined: Jan 2018

I'm now 26 months post-surgery and have no lymphedema symptoms. They took all my pelvic nodes, so I've been worried about it. I exercise vigorously every day and am quite active.

I've read that for breast cancer survivors, the risk of developing lymphedema drops off dramatically after 3 years. Does anyone know how long until the risk reduces a lot for we uterine cancer survivors? I know the risk is never gone, just wondering if there's knowledge out there for when our risk goes substantially down.

Thanks!

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

Most of the studies I read when I developed lymphedema didn't mention a typical time frame range for when this could develop. But I was more interested in learning whether the lymphadenectomy had an increased survival benefit, so I wasn't really looking for that type of time estimate.

I developed lymphedema in my legs (the left leg being worse than the right) about 2 ½ years after surgery. I also had pelvic radiation, which increases the chance of developing lymphedema.

I had thought I was "safe" from this side effect since I had gone more than two years without lymphedema. So I was disappointed when it developed, despite the length of time after treatment.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

I, too, thought I had missed getting in my legs but 2 years later my left leg became very hard and it needed massage.

I did PT for 6 weeks, 2/ week and now have a drainage machine I use 2/3 times a week. 

Forherself's picture
Forherself
Posts: 464
Joined: Jan 2019

Just what we were taught as nurses.  The way to avoid lymphedema is exercise and movement.  Pooling lymph creates lympedema.  Your muscles are moving the lymph.  If you are being extremely active I would say you are getting the best result.  Also elevating your legs and wearing support hose if you are not doing that already.

 

MoeKay
Posts: 301
Joined: Feb 2004

UpToDate has a patient education section on Lymphedema after Cancer Surgery which states, in part, as follows:

Most patients who develop lymphedema do so within two to three years after their surgery, but it is important to note that the risk remains over a person's lifetime and increases with trauma or injury to a limb. 

For more information, here is a link to the entire article:  https://www.uptodate.com/contents/lymphedema-after-cancer-surgery-beyond-the-basics.

So it sounds somewhat similar to the information you found for breast cancer, Tamlen.

In reviewing the references listed at the bottom of the article, most relate to breast cancer.  However, the article itself is not limited to surgery for breast cancer and the discussion covers cancer surgery in general. 

 

Tamlen's picture
Tamlen
Posts: 281
Joined: Jan 2018

Thank you for the help, everyone. No compression or support hose for me (can't stand it, my entire life; haven't put on stockings in 20 years), but I will remain diligently active and keep my fingers crossed. I do elevate my legs when sitting. I appreciate the information you all shared.

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