Lymphedema post-inguinal/groin node dissection

Posted By
10/26/2010 1:30pm
View other posts by
Activity
Replies: 25

Hi there,

After my SNB came back positive, I had surgery to remove the rest of my inguinal/groin nodes last week (Oct 18th).  I'm really worried about the prospect of lymphedema now and would love to hear from other people who have had this surgery and what your experience has been and how you've dealt with it.  I was a very active person before and I plan to be again but worry how lymphedema is going to affect my ability to hike, bike, run, etc.  So far, I still have my drain in and it's removing a lot of fluid, which feels good so I plan on requesting to keep it in as long as they'll let me.  I'm still very much in the early phase of healing so when I'm sitting or lying down, I keep my leg elevated and also try to do some gentle massage on my leg.  Is there anything else I can be doing?  What can I expect later in terms of swelling and ability to be active? 

Thanks for any info you can give me!

Monica :)

Hi Monica,

Did your doctor give you a prescription for a compression stocking?  If not, ask for one.  It will help.   

Wishing you a speedy recovery.

Tracy

wife to Bill, stage IIIc

I asked right after surgery while I was still in the hospital but he said no.  I see him again next week for results though so my plan was to ask again.  If he says no again, I'll just get one anyway.  I work in a physio clinic so I can get one of the physios to fit me.  Where there's a will, there's always a way! ;)

Hi Monica: I had a complete lymphadenectomy on the left side of my groin more than two years ago and have not had a serious problem with lymphedema since. Like you, I'm a runner and cyclist and was very concerned about how surgery would effect my leg. The bad news for me was that I had nerve damage and have never recovered sensation in my anterior upper thigh; it feels wooden. I also have some fibrosis, so the left thigh is slightly larger than the right and the muscle a little stiffer. The good news is that I resumed exercise within weeks of surgery, starting with walking but eventually working up to a marathon a year ago. Even though I'm now stage IV, I still run regularly and have normal function of my affected leg. In the first few months after surgery, I worked especially hard at self-massage (yes, it should be gentle) and stretching exercises. I went so far as to buy a compression garment, but wore it once and threw it away. I also saw a lymphedema specialist before my surgery, but she didn't have much useful advice. I worried that the drain in my surgical site would never stop draining, but one day it just stopped. Don't be in a hurry to have it removed, as I was. I loathed having that thing dangling out of my leg. I hope you get back on your feet soon and resume your exercise regimen. It not only retrains the muscles to do what they're capable of doing, but it's also great for your immuine system. I've been blogging about my experience with melanoma for two and a half years, which includes posts on running and what it's done for me. My URL is www.theogler.blogspot.com. God bless. Peter.

Thanks so much, Peter!  That was very encouraging!!  My biggest concern has been the impact on being physically active because it's always meant so much to me.  We have physical scars to remind us of our cancer...do we really need more than that?  I'm trying my hardest to just live life as 'normal' as possible. 

My thigh is also numb.  I expected it though.  The area on my lower leg where I had my WLE still has a patch of numbness around it.  I hope the numb area on my thigh gets at least a bit smaller but I can live with it if it doesn't.  It's weird to walk and know your legs are touching but only really be able to feel it on one side. 

My drain is still flowing quite a bit.  At first I was in a hurry to get rid of it but now that it's working properly I realize how much it makes me feel better and am fighting to keep it as long as I can.  My doctor was planning on taking it out a week after surgery (Monday that just passed) but I convinced him to give me a few more days.  Now the plan is to take it out tomorrow but it's still draining so much that I plan on asking for a few more days.  We'll see.  I know there's concerns about the possibility of infection around the site, etc. but if I'm not showing signs of that and it's helping, why take it out?  I consider my drain to be my little friend now..lol.. It will be nice to lose it eventually, but it's ok for now.  Again, thanks for your reply.  I'll be sure to check out your blog.

Hi Monica,

I'm in the same boat, with my lymphadenectomy on Oct. 4.  Sounds like you're doing all the right things, are you still wearing a stocking?  My doc told me I should wear it for 6 months.  I had been wearing TEDs until today when I was fitted for real compression stockings.  If swelling occurs (or even if it doesn't) I was told to see a lymphedema specialist who will teach proper massage techniques. 

I don't think you should be sitting yet (i.e hip-leg angle at 90 degrees, since the lymph can't flow well through that), only lying down with leg elevated (as you are doing) or walking (light exercise is a good thing) but that's just based on what I was told (I had to lie down while in a vehicle--NOT comfortable).  Also, don't bend over to pick anything up for a while.

Also, keep milking your tube, mine got plugged and I had some fluid in upper thigh area.

They removed my drain after 2 and a half weeks (Oct 21), and by that time the drain had become annoying/painful than the surgery.  Life will be better without it, since you can wear real pants, and you won't have that tugging.  Grrrrr!

I'm very interested to hear of your experiences, please let me know how it's all going.  You have my support, hang in there, since I'm confident that we will both be up running, biking and hiking later on. 

Take care of yourself now more than ever!

Best,

ChristineL

Stage IIIb

Fight like hell

Hi Christine,

I never had a stocking.  I asked but the doc said I didn't need one.  I see him next week and plan on asking again.  If he says no again, I'm going to get one anyway.  I work at a physio clinic so will just get one there.  I also plan on asking for a referral to get lymphatic drainage massage.

I've definitely been doing more lying than sitting and you're right, it really helps.  It's when you have to get up from lying down that really hurts!  Gravity is mean!  For me, I find it's the first 20-30 seconds of standing up that really hurts and then as I move, it's ok again.  It's weird how aware you can be of the fluid flowing in your body now.  I look forward to this sensation passing soon I hope!

I have had my drain for 9 days so far.  The original plan was to remove it on day 7 but I convinced the doc to let me have it for a few more days.  He's now planning on it being removed tomorrow but I plan on asking for a few more days again because it's still draining a lot of fluid.  I do look forward to wearing real pants though - lol! :)  For me, I had issues with my drain while still in hospital.  I got it on a Monday and by the Tuesday night it stopped draining and my thigh started really swelling out.  I told two nurses, a nursing assistant, and two nursing students and nobody said anything about milking it to get it going again.  The doc dismissed it to (but I'm hoping he just thought the nurses would take care of it and didn't realize they weren't).  I got home on Wed and on Thurs my mother-in-law was over and she was the one who told me how to milk it.  It was such a relief to start to have that fluid removed again... I still shake my head that they didn't realize how to start it draining again or even that it could/should be restarted... I'm just glad I did get it restarted and it's still flowing...

Feel free to email me if you'd like to chat more.  While I wish neither of us had cancer, it's nice to meet someone who is pretty much where I am at with all of this.  Thanks for replying.

Monica
monicadoiron@yahoo.com

Monica,

I had a melanoma removed from the bottom of my left foot in Feb. 2010.  Two weeks later I had the lymph nodes in my left groin removed because the SNB came back positive.  The skin graft died on the bottom of my foot, and I ended up going for wound care for about 2 months.  They urged me to get a compression garment before I started having problems as it is easier to prevent fluid build up than to get it back out of your leg once it has already accumulated there.  From what I understand, the more active you are the better it is for managing/preventing the lymphedema.  My foot has limited, and will continue to limit, my activity level.  The compression garment is a nuisance, but if the first one you try doesn't work, there are a surprising number of options to try.  I have spent months trying different things to determine which will work the best.  Even my best option is annoying, but I can live with it.  When I think I want to give up on the whole idea, I do a Google image search for lymphedema.  I really don't want to go there.  If I don't wear the compression garment for even a day I can tell the difference.

From what you wrote, I suspect that your experience will be totally different, in a positive way. 

Cheri

Hi Cheri,

I couldn't help but laugh a little when I read what you wrote about Google image searches!!! I KNOW!!!!  It's the Wikipedia one that gets me every single time I see it.... crazy!!  That image is burned into my brain.  I think maybe it's partly why I'm so obsessed about preventing lymphedema as early on as I can.  I googled it right before my surgery and it totally freaked me out... I'll wear a million compression stockings if that's what it takes - lol!! :)

Sorry to hear about your problems with your graft, etc.  Thankfully, when I had my WLE, I didn't need a skin graft.  The surgeon was able to pull skin around from behind my calf to the front.  It's a pretty crazy looking scar, but I think it healed much easier than a skin graft would've.  I hope things are going better for you now.

Thanks for replying.

Monica 

A feet physician, also known as a podiatric physician, allows people take care of one of the most important areas of the body. You make sure that you can get where you need to go and take a large number of actions every day. When something doesn't seem right, you can't just neglect the discomfort disappointment. It is time to routine an consultation.

podiatrist dublin

Monica,

I had a melanoma removed from the bottom of my left foot in Feb. 2010.  Two weeks later I had the lymph nodes in my left groin removed because the SNB came back positive.  The skin graft died on the bottom of my foot, and I ended up going for wound care for about 2 months.  They urged me to get a compression garment before I started having problems as it is easier to prevent fluid build up than to get it back out of your leg once it has already accumulated there.  From what I understand, the more active you are the better it is for managing/preventing the lymphedema.  My foot has limited, and will continue to limit, my activity level.  The compression garment is a nuisance, but if the first one you try doesn't work, there are a surprising number of options to try.  I have spent months trying different things to determine which will work the best.  Even my best option is annoying, but I can live with it.  When I think I want to give up on the whole idea, I do a Google image search for lymphedema.  I really don't want to go there.  If I don't wear the compression garment for even a day I can tell the difference.

From what you wrote, I suspect that your experience will be totally different, in a positive way. 

Cheri

Hi,

The drains are awful and I couldnt wait to get mine out, good luck!

I had my surgery in Feb 09.  My doctor gave me a prescription for a compression stocking to help me.  I found it was a huge help for me (after site had healed)  One trick nurses told me was to wear mens cotton boxers under stocking to help prevent the stocking from rubbing on my scar.   Now,  I walk alot and find that if I dont walk my leg hurts and gets heavy feeling.     I did have nerves cut and do have less feeling in my thigh.  I now wear my compression stocking only if I know I am flying, long car rides, or been inactive for a day or two.  Otherwise I try to walk 3 miles a day and I havealso found that if I gain weight my leg hurts more  , so I tell people that my leg is actually helping keep me active and eating healthy :)

I also had to do radiation on my thigh  and during that time I swam everyday to keep my leg moving.  Luckily  I have not had lymphdema just the heavy feeling and occassional aching.   I hope this helps.

take care - keep us informed.

laurie from maine

That did help, Laurie.  I hadn't thought of swimming, but that's a great idea.  How soon after your surgery did you start walking?  I really miss exercise but I'm only a week and a few days post-surgery and not sure how much I should push it.  I have been moving around the house as much as I can though but when I stop, I lie down and put my leg up... so far, so good.  I have some swelling off and on but it's mostly above my knee/in my thigh except for a tiny patch near the inside of my ankle.  So far I've been able to gently massage out the ankle part.  Today is actually the first day my leg feels almost 'normal.'  Before today I kept feeling like there was a tennis ball between my upper thighs when I walked but it seems to be less today.  I hope it stays that way.  Thanks for the info.

Monica from New Brunswick (we're sorta neighbours!) :)

Hi,

You are doing great gathering all your information and working on a plan!  I am trying to remember how soon I started really walking,  I believe that the key in beginning is to make sure your site is healed you dont want to have to deal with infections.   I believe I started walking slowly (my nerves as well as my muscle had been cut so I  had to work on rebuilding muscle, things like stairs, inclines, in and out of cars was tough until my muscle came back)  so I walked but slowly, I think any movement is positive.  I swam during radiation to give my leg the least stress possible while still keeping it moving (I believe someone on this site mentioned it so I dont get credit for that one :) .

So key is heal heal heal - then work on exercise plan that works for you.  I also think the stocking seems to be different for each person but good to have for achy days.  I never did massage,  my leg was very manageable if I kept up exercise, I believe I am one of the lucky ones.

keep us posted

laurie from maine

Hi Monica,

I had my inguinal LND in June 2007. I immediately started wearing a compression stocking, Mediven thigh length, and I still wear it every day. I also went to a manual lymph drainage specialist for several months. My lymphedema is not at all like the pictures you said you saw on line, and I don't think anyone on this board has anything near that. For me, my leg is just a few cm bigger in circumference than my good leg, and I have full function. It just takes time. Good luck with your recovery.

Hugs

Sharyn (Newfoundland)

Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Hi Monica,

First remember not everybody's lymph node removals results in lymphedema. Recent stats are, however, starting to show it to be much higher than the 30% that has been the standard, more likely 50%. I was closely monitored on a regular basis for the first few months after removal of 11 nodes...alas, I do lymphedema. What the specialist did was using a small tape took 'measurements' of my leg and noted on a chart..ankle/calf/knee/thigh (a few measures in each area), you could do this yourself on a spreadsheet and keep an eye out for changes in measurements. 

Your massaging is an excellent idea...also Monica, often breath slowly and deeply in and exhale with gusto...very good for circulation of lymphatic fluids.

The link I am attaching is the Quebec Lymphedema Association and while it is not applicable to U.S., it will give you a general idea of how to handle lymphedema. With my recurrence, my lymphedema has been out of whack (currently wrapping mostly) but once we stop the beast, I definitely plan to get back into cycling!!!   When not wrapping and leg is feeling better, I use a compression panty hose of 30-40% bad leg, 20% remainder and cut off at knee on good leg. Aquatics and Tai Chi are excellent, forget yoga - too long in same position.

Val

http://www.infolympho.ca/en/index.en.htm

Live Laugh Love
Nothing is worth more than this day!

Hi Val,

Thanks for the link.  I'm actually located in Canada (New Brunswick) so maybe it will be applicable to me.  It's still early but so far my leg is doing pretty good.  I'm constantly checking it against the good side.  Thanks for more ideas for exercise too - I'm just anxious to get back to doing something other than healing for surgeries! lol ;)

Thanks again,

Monica

Hello Monica,I had my lymph nodes removed from my left inguinal area  in 1992 and worked for many years following as a registered nurse standing on my feet many long hours.My Dr. reccomended I wear compression hose right away but I didn't do so until about 3 years later when i started to develop lymphedema,now I wear it constantly,not only to help reduce the swelling but for the comfort as well.I'm still very active,walk a lot,elavate,and have done physio and manuel drainage and used the pump in the past and keep it fairly well under control.As Sharyn said the swelling is not extreme but I don't let it get out of hand either.I too live in N.B. and was contacted some time ago by some folks from a lympedema clinic in Fredericton.I didn't attend and don't know if it is still active or not.Best of luck and just take care not to cut or get infection in that leg.I am in Saint John,where are you?Elaine

If He leads you to it He will see you through it.
Why worry about tomorrow until it comes

A fellow New Brunswicker! Hello! :)  I'm in Moncton. 

So far I've had good experiences with my surgeons and my leg is doing well.  It's still early though so I want to make sure I have all the info I need to keep it that way going forward!  My current surgeon is letting me keep my drain longer than originally planned and I really think it's helping.  I see him again next week and will ask about a compression stocking, massage, etc.

Did they remove only the inquinal nodes or did they also remove iliac and or femoral nodes?  The more removed the higher the possibility of lymphoma.  I had both the inquinal and the deeper iliac chains removed.  My inquinal  nodes curved intoward the pubic area, not down the leg.  This prevented the need for a flap to protect the blood vessels. (So I'm narrower n ne sid f the abdmen than the other, but other than the numbness in the upper inner thigh area everything works great. Over time the nmbness has reduced a  little and I have became used to it and am no longer bothered by it. One of my drains was removed after two weeks when the flow dropped to 20 ml per day.  Due to my being very active,  the other drain was putting out over 400 ml per day.  I kept it in for about 6 weeks. (At 4 weeks I built an outdoors deck)  Flow finally dropped to near 20 per day.  I kept the leg up when not using it, but walked and worked outdoors mujch of the time.  I did massage from the foot up past the abdomen quite often.  The main problem was keeping the drain open for the length of time the drain was in (milk that tube!).  I elevated the leg on pillows for the first year.  h\

Remember, it is the action of the muscles that pumps the lymph fluid up the ducts. A new path has t be developed to be lymphoma free.   Have not used any compression stockings, nor felt a real need for them.  In spite of having busted up both legs in 1980 and being told I should not walk again, I still bike and walk and kick the ball for our dog.  (Don't run due to the leg prblems, but do everything else! (Including playing with 10 grand kids)

http://cancerguide.org/rcc_il2hd.html.

http://www.carepages.com/carepages/JerryEllis

 

 

I'm me, not a statistic. Praying to not be one for years yet.

Oops, meant lympedema, not lymphoma. 

I'm me, not a statistic. Praying to not be one for years yet.

Thank you all for this helpful information.. stockings ...massage... JPtubes ...My melanoma was on my toe, which was amputated.2 weeks ago ( April 17,2012). The SNB came back 2 out of 3 positive . I just had a groin dissection this week (all negative..yeah...) and like each of you, have been very worried about lympedema. I am usually pretty active.  I have a lot of swelling and bruising ...almost all above my knee although some bruising is just now moving down the leg. I have JP tube and the flow is actually increasing... I thought it may be because i am walking more. Still spending much of the time with leg up and ice..

Want to meet with local lymphedema PT specialist but 1st available appointment is still over 3 weeks away.. So many questions. For those with stockings..when did you start to wear them? Did you begin with below the knee? Any special way to do the massage.. Should I begin right away or wait for swelling to go down.. I am just wondering if it may help the swelling.. but will it spread the bruising?/ Thank you all for your inspiration and practical help!!!!

kluft,

i am getting my left groin nodes removed on the 8th of august.  i am new at this lymphedema stuff too.  i am also very worried about it.  if you find out anything, please let me know.  and i am 63 years old so i have no medicare yet.

thanks,

catmandu

Hi Monica,  

Wishing you courage and love on your journey.  I was reading your earlier posts and appreciated your openness and the many responses.  I am wondering if anyone has found successes with more alternative therapies.  I have used hyperthermia, whole body and loco/regional and it has definately reduced tumor side without side effects... still not NED.

I am dealing with a stage 3 melanoma diagnosis.

Anyway,  in response to your request of dealing with lymphedema.... following is a listing of practitioners

of many modalities.  Pull up the site, chooses "lymph drainage therapy" 

from the list, put in your location and a list of practitioners will come up.  You want someone who has at least gone through Level 3 of the lymphatic training courses.  These people were trained by Bruno Chikly who is an Osteopath and literally wrote the most current text book on and teaches manual lymphatic drainage.  His students are well trsined in the anatomy of the lymph system and also the sensitivity and delicacy needed to work with it.  Your practitioner will also be able to teach you some self lymph massage.

 

Good luck to you,

Aloha, Ann