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Lymphedema

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

In the thread entitled "How many lymph nodes?  (Includes Recap of Lost Posts)" ncg007 commented that she had developed lymphedema about 2.5 years. I've also developed lymphedema at about the same time post-surgery. After a deep vein thrombosis ultrasound to ensure that I didn't have any clots, I met with the occupational therapists and was advised to start wearing a compression stocking on my right leg. My left leg, which was more swollen, was kept wrapped for three weeks (changed three times a week) before "graduating" to a compression stocking on my left leg. I also wear a different compression device on the left leg at night.

Both legs were measured again after three weeks, which showed improvements, but my left leg, especially my foot and ankle, are still more swollen than the right. I also do exercises to help move the fluids. I hope that I can further reduce the left leg, but I will probably have to wear the compression stockings for the rest of my life. Good thing I had already given up shorts and sandals years ago!

Since I've confirmed from personal experience that lymphedema can develop years after treatment, just a caution for others to keep an eye out for this. I probably didn't catch it as soon as I should have because (1) I've always had thicker ankles and calves and didn't really notice anything was different until my left foot was visually more swollen than the right and (2) I was preoccupied with finding the cause of persistent stomach aches I had been having for a few months (Fortunately nothing major - CT-scan clear and stomach problems mostly gone with a prescription for an antispasmodic).

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Good reminder. I tend to feel like I escaped this side effect. But in truth it's only been one year since I finished radiation.

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Really sorry you're enduring this!  Are you attributing it to surgery or radiation or chemo or some combination?  I do remember my surgeon saying it was unlikely for me because she only took two lymph nodes, but my calves and thighs are larger than they were - not a lot, but I do notice it.  Feet and ankles, not so much (although since I broke one ankle last year and have all the hardware in there, it's larger than the other for sure.)  What's your preferred compression sock?  Mine are hard to put on, but feel really good while I'm wearing them.

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

Armywife, I had 17 lymph nodes removed during surgery (all negative) and later 25 rounds of external radiation. So I'm not sure which treatment caused the lymphedema or if they both contributed.

I'm using the Juzo brand of stockings. I did have to switch from the "short" length to the "petite" because I found that the right leg stocking kept creasing at my ankle. When I was fitted for the left leg stocking, I got the petite length for both legs. I still have to adjust them periodically so they don't crease at my ankle, but that happens far less often and the creasing is less severe than it was. The fitter told me that the only way to completely get rid of the creasing is to order the custom made stockings, but I'm holding off on that expense for a while until I see how do with the commercial version on my left leg (and what my insurance pays for).

If my insurer does cover some of these expenses I may order the custom versions before I switch to Medicare next year since I understand that Medicare doesn't pay for compression garments (and the supplement plan that I intend to get won't cover what Medicare doesn't).

I'm using the open toe stockings because of the neuropathy in my toes and the balls of my feet. And I dislike wearing shoes in the house. But the foot part of the stockings stay in place better when I'm wearing shoes, so I'm trying the change my habit of kicking my shoes off when I get back in.

I find it easier to put the stockings on and take them off with my legs up on my ottoman. I actually have a harder time taking them off than putting them on. But like you, I don't mind having them on. They're especially helpful on those days when I'm on my feet a lot.

I hope that your ankle is doing okay now, despite the additional "hardware." Such bad luck for this to happen during your vacation after treatment.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2583
Joined: Mar 2013

Armywife, I was fitted with a Medivan compression garment.  I saved the "sizing" from the box end so I know what size to order in the future.  I also have a 30-40 and it took me a few years to figure out how to work these puppies.  Like cmb, I wear the open toe knees highs, because I wear sandals in the summer. 

For the ones that have kind of lost some of their 'spunk' I take an indelible marker and make decorations on them and will throw them in to the mix when I dress for work.  

Funny story, this past Tuesday I had to go to Atlanta for the day.  As I was riding the escalator up to the ticket counter I felt something on my non-compression garment leg.  I turned around and saw a young airport worker standing there.  He said, "I was just wondering if you realize you only have on one stocking?"  I walked with him and told him what it was and why.  Of course, this very polite, young man asked if "everything is ok now?" and I told him yes, but now he learned something new today.  Our opportunity to teach is out there all the time.  

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

I’m currently very worried about lymphedema. I will be evaluated this Monday.i wish I could have been evaluated sooner. My oncologist had seemed sure that I would get lymphedema. I didn’t have as many lymph nodes taken so lm not sure why. Anyway whenever I aske about signs they always mentioned the ankles and feet. Why is this when the nodes were higher up? Really my left ankle is just a little swollen, not much but I see changes in my thighs kind of ripply if that makes sense. Actually I’m rather depressed about the whole thing when I have had a fairly positive about the cancer etc. Diagnosed with cancer August 2015 With clear cell stage 3C and clear after all radiation and 6 rounds of chemo

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

Soup,

The feet and ankles swell because fluid "pools" at the bottom of the leg and can't recirculate back up as usual due to damage in the lymphatic system. My calves and thighs had some swelling too, but it was most noticeable in my feet and ankles. The occupational therapist did assess the condition of my leg skin, but since it was still soft and "pliable" they told me that so far things were good on that front. I hadn't noticed an increase in "ripples" but must admit that with all my cellulite it would be hard to spot!

I was disappointed that the Lymphedema developed after I had been feeling quite recovered from the cancer treatment. At first the thought of wearing the compression stockings did make me feel like I had officially joined the "old ladies club" (although chronologically I already had!). But when I read of the difficulties that some of the other ladies on this board have dealt with during and after their treatments, I'm just thankful it isn't something worse.

If your evaluation next week does indicate Lymphedema, you may be sent next to a physical or occupational therapist that has specialized training in treating lymphedema. The PT or OT will measure your legs and determine the best treatment approach. This could include the stockings, leg wraps like I had, exercises or massages. Once the lymphatic system is damaged, I don't believe it can ever heal itself, but the right treatment can minimize fluid buildup and prevent worse problems in the future.

ncg007
Posts: 132
Joined: Nov 2015

CMB sorry to hear that you now also have Lymphedema and interesting that it hit at 2.5 year mark too.   I continue to struggle and like you more prominent in the left.  I found the Jobst Sport compression socks are most comfortable and they are more light weight.  Bonus they come in cute colors.  Unfortunately I am not able to wear them often because my nerves have become so sensitive in my left foot, thanks to neuropathy and spinal nerve damage.  I’m not happy with theses cankles and am in constant pain.  I do keep up with massage therapy and excercises learned in PT.  Dry brushing your legs and arms up towards your heart and also squeeze lymphs under armpits when showering helps with moving fluid.  I imagine lymphedema would be much worse if I didn't do all this.  Hope you find relief.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

My hysterectomy was more than 2 years behind me when, viola!, I suddenly had swelling in my right leg. I was super indignant because I thought I'd gotten away free from that particular curse. But no. I see massage therapists occassionally but find my success is based more on how much self maintenance I do at home. I have all accoutrements - capris, leg wraps, thigh highs, calf-lengths, etc etc. I can't imagine how hot all that crap is gonna be this summer ... After much trial and error, I would up buying Sigvaris toe less thigh highs on Amazon. I really like that brand as you can order in combinations of size and length, and their knitted in heel is easy to seat. Once that's done there's no drama at all getting them the rest of the way up. Best of all they have a unique gell band at the top that holds them up without strangling the tops of your legs and giving you sausage thighs under your clothing. 

ConnieSW's picture
ConnieSW
Posts: 1440
Joined: Jun 2012

Where would we be without this site and all the experience/ advice. 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Hi all,

Yes I too have had swelling actually down around my ankle on the left...interesting a lot of us are also dealing with the left side. The right foot just started to show some puffiness in the last couple of days so getting out my compression stockings and using them. Just went on Amazon and ordered some toeless ones to wear with my birkinstocks for summer. My hubby is wonderful with massaging my ankle at night and that really helps! 

xoxo

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

I got a 'prescription' capri that doesn't seem to do much good, and two sets of thigh high stockings from Amazon that do. Initially I got the ones from Jomi, but found the ones from Sigvaris work better for me (more choice of sizes, and I like the gel band at the top). I also use a Doc Miller ankle compression support sleeve on my feet when needed. All of the above are open toe; my feet HATE to be enclosed so I'm pretty much in sandals year-round.

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

Today was my final appointment with the occupational therapist. Since this is all relatively new to me, I really appreciate the comments on brands, products and treatments that others have used. Thanks everyone!

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Ladies who are dealing with lymphedema, would you mind answering a couple of questions so I can get a feel for where this will lean statistically?

1.  How many lymph nodes were removed during your surgery?

2. Did you have further treatment after surgery?   Chemo? Radiation? Brachytherapy?

3. How long after treatment did you realize lymphedema was a problem?  How obvious was the problem?  (Could you see a difference, feel a difference, or just notice something wasn't right?

4. What therapies have you found most effective?  Massage? Jumping on a trampoline? Compression socks?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2583
Joined: Mar 2013

1.  How many lymph nodes were removed during your surgery?

A lot.  My onc looked at my record and joked I had a 'hysterectomy plus' because of all the nodes the gyn onc took.  

2. Did you have further treatment after surgery?   Chemo? Radiation? Brachytherapy?

Yes, I had chemo/radiation (external and brachy)/chemo

3. How long after treatment did you realize lymphedema was a problem?  How obvious was the problem?  (Could you see a difference, feel a difference, or just notice something wasn't right? 

I had finished first round of chemo and hadn't started radiation when I noticed my leg looked swollen.  They were afraid it was a blood clot so I had an ultrasound, ruled out the blood clot and determined it was lymphedemia

4. What therapies have you found most effective?  Massage? Jumping on a trampoline? Compression socks?

I was scheduled massage therapy with a PT who was specially trained to work with cancer patients.  She measured and fit me with the compression garment.  She decided the strength and trained me how to put it on (30-40 is pretty strong and you don't want any creases)  She offered to train someone on how to perform the proper technicque on massage, but I am single, so I just asked questions and learned what I coudl for myself. 

Northwoodsgirl
Posts: 527
Joined: Oct 2009

Hi Army Wife, Great questions that many of us have wondered...

1.  How many lymph nodes were removed during your surgery? 26 

2. Did you have further treatment after surgery?   Chemo? Radiation? Brachytherapy? Yes, all including external radiation 26 treatments.

3. How long after treatment did you realize lymphedema was a problem?  How obvious was the problem?  (Could you see a difference, feel a difference, or just notice something wasn't right? Immediately upon completion of treatments. Saw a certified lymphedema therapist for massage treatment and learn how to self message and what exercises to do and about compression products. First notice swelling worse on left leg than right. If it is hot and humid my lymphedema is worse. 

4. What therapies have you found most effective?  Massage? Jumping on a trampoline? Compression socks? Best treatment for me is wearing compression knee highs. Bicycling or swimming or using a large exercise ball or Pilates using machine. Massage when I can is very helpful. I make it a point to elevate my legs whenever I am sitting. I always wear compression stockings if on a car trip. Flying on a plane increases swelling. I also found that wearing a wider width shoe helps - before lymph node removal I wore regular width shoes. Now in the winter my dress boots are a wide width to accommodate swelling as the day goes on. The issue with lymphedema is that if not treated it can become worse to the point where one could develop skin ulcers that don’t heal. 

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

Hi,

I had 27 lymph nodes removed with my hysterectomy in Sept. of 2016.

I've had everything; chemo, radiation, brachytherapy (all in 20117). When my cancer recurred less than 6 months after end of treatment, I started on clinical trials and lots more chemo, as well as immunotherapy this spring. I'm now stage 4.

I had radiation about 6 weeks ago to deal with tumors in my right shoulder muscle (my cancer is very odd in the places it goes). Between that period and starting of traditional chemo (Taxol, Avastin, Carboplatin), I developed swelling in my left leg, as well as in my groin area! I had no idea it would go there, but I guess it's a thing according to my physical therapist. I have a little apron of swollen lower stomach; yuck.

The swelling was very sudden and very noticeable. Since I started chemo, the groin swelling has gone down a little, but I have to wear compression pantyhose during the day (just bought 20-30 weight off Amazon) for both the leg and groin swelling. I do exercises every night and things look good in the morning, but it just takes me walking around for 10 or 20 minutes to start the swelling process. Thank goodness we moved to a cooler area so I can wear long pants and tennies most of the time.

On top of everything else, this is just so depressing.

Kat

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

We are SO GLAD to hear from you, my dear ! I'm so sorry to hear about the lymphedema, and can especially relate to the late-onset woes. I, also, thought I'd gotten away without it, and was foolishly proud of the fact. HA! Nature played a joke on me, for sure, and mine came on after a couple of years. That said I'm glad you're in a cooler place, as heat is supposed to be an aggravating factor. But, regardless, it's such a wonderful thing to log on and see your smiling face! I'm also happy to hear you're having radiation for the shoulder mets. Radiation is fraught with issues, of course, BUT it's the only thing that has actually killed off my tumors, and I'm damn glad it's there. I'm sure you'll be getting some relief soon! Best wishes always, B

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

Please know I am thinking of you and hoping you have some relief from your lymphadema. There is nothing easy about this disease. Glad to see you comment.

Denise

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1532
Joined: Jun 2015

Kat, so happy to see your smiling face again! I hope this next round of Taxol and the radiation get everything under control for you.

I guess we never know what next thing is going to hit us with this crappy cancer! So sorry that you are having to deal with the Lymphadema on top of everything else.

Please keep coming back when you can and let us know how you are doing.

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2583
Joined: Mar 2013

Kat!!!  I am so sorry to hear about everything you are going through but I am SO GLAD to see you post!!  You have SO been on my mind and I know I am not the only one.  Please continue to let us know how you are doing.  Hugs!!!

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

I don't log on that often, but maybe I better change that! Such a nice greeting from you guys. Lymphedema is no better and it looks like I'll need the really thick hose to squish my damn leg down (and who knows what for the groin area)! I'm trying not to feel too much self-pity but it's so hard when I see folks in their cute sundresses and capries and sandals and I'm wearing long pants and tennies. I finally lost weight (had to get cancer to do that) and my legs were looking pretty good!

 

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