MRF-Logo2019-Horizontal-RGB
Odds of getting lymphedema??
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Odds of getting lymphedema??

› Forums › General Melanoma Community › Odds of getting lymphedema??

  • Post
    • June 28, 2017 at 11:53 pm
    Matt3127
    Participant

      Hello all,

      My name is Matt. I'm a 37 year old male, stage 3a, currently waiting for acceptance into a clinical trial. I was just curious to hear anyone's experience with lymphedema after having lymph nodes removed. I will be getting my second wide excision surgery in as many years and my oncologist recommend removing all the lymph nodes in my left arm. I have seen pictures of lymphedema and, am very nervous. I'm left handed and not having normal use of that arm is very worrisome. Any information would be greatly appreciated. 

      Thanks,

      Matt

    Viewing 11 reply threads
    • Replies
        • June 29, 2017 at 12:50 am
        Christinad
        Participant

          Hi Matt, 

          i am also stage 3a. I had the lymph nodes removed from under my right arm 2 1/2 years ago (seems like yesterday). I get mild lymphedema occasionally if I fly or do a lot of physical work with my right arm, but nothing too noticeable and I don't have any pain when it happens. I have a sleeve I wear when my arm swells which helps a lot. 

          My biggest complaint after lymph node dissection was limited range of motion of my right arm. I was seen by a  lymphedema specialist who showed me exercises to do daily to help increase the range of motion of my arm. Slowly but surely my arm got better and I was able to raise it in the air again. 

          • June 29, 2017 at 12:50 am
          Christinad
          Participant

            Hi Matt, 

            i am also stage 3a. I had the lymph nodes removed from under my right arm 2 1/2 years ago (seems like yesterday). I get mild lymphedema occasionally if I fly or do a lot of physical work with my right arm, but nothing too noticeable and I don't have any pain when it happens. I have a sleeve I wear when my arm swells which helps a lot. 

            My biggest complaint after lymph node dissection was limited range of motion of my right arm. I was seen by a  lymphedema specialist who showed me exercises to do daily to help increase the range of motion of my arm. Slowly but surely my arm got better and I was able to raise it in the air again. 

            • June 29, 2017 at 1:43 am
            ed williams
            Participant

              From this years ASCO, data from MSLT-2 trial of CLND or observation. http://www.ascopost.com/News/56731

              • June 29, 2017 at 5:40 am
              lindanat
              Participant

                Hey Matt,  I am Stage 4, had large mass removed from under my right arm along with a lot of lymph nodes in Oct. 2016. I started with lymphadema care right away, started wearing a sleeve (I'm right handed so I was worried about use) and have done very well.  No lymphadema so far.  I also started doing exercises within a month just to keep things moving.  If you have a lymph clinic available, take advantage of it.  The instruction and care were very helpful.  If you don't, you can find lots of helpful info online. There is a you tube for just about anything. smiley  Good luck and keep your chin up!

                 

                Linda

                • June 29, 2017 at 11:08 am
                youngann
                Participant

                  Hello Matt, another 3a chiming in. I had a right axilliary CLND almost a year ago and, upon the recommendation of a friend, asked to be referred to a Lymphedema therapist as soon as my drain was removed. I'm still wearing a sleeve and glove everyday but the swelling is very minimal.

                  I'm a right-handed competitive pistol shooter so, like you, I was very concerned about having limited use of my arm after surgery.

                  Good luck

                  Ann

                    • July 2, 2017 at 12:30 am
                    Threefitty
                    Participant

                      Replying here as a 3B and classical guitarist with no right lymph nodes now for 5 weeks. 

                      I am already doing things I should not like manly yard work which makes me feel good. Like Ann, I have a delicate right hand hobby that means alot to me. I swell a bit and back off.

                      I can still play without a problem but I'll be surprised if the jumpshot comes back. From my perspective you deal. I had some genuine remorse about losing a body part, possibly for no non-diagnostic reason, when I plan on taking the most aggresive response anyway.

                      But I've read too many stories not to think the road continues so diagnostic stuff at an early juncture and any possible small improvement in survivability odds is valued in my view. YMMV as always.

                      Best,

                      $3.50

                    • June 29, 2017 at 2:12 pm
                    Linny
                    Participant

                      If you're put into a situation where you are at risk for lymphedema, the best thing you can do is be proactive and stay on top of it. Like the old saying goes, "an ounce of prevention is worth a pound of cure." 

                      Seek out a physical therapist who can educate you on that condition. Hospitals with breast cancer centers should be able to refer you to one. Why them? Breast cancer patients can also have lymph nodes removed and a hospital with a dedicated breast cancer center will have access to physical therapists with the proper expertise. This therapist will measure you for a compression sleeve, teach you about manual lymph drainage, and more. Regardless of how your arm looks or how you feel, at minimum you will need that sleeve for air travel. Make that appointment just prior to your surgery.

                      I had my surgery done in 2011 and have just a little bit of fluid buildup near my elbow that's remained stable. I see the therapist once a year to get measured and to make sure I remain stable. I'm a part time musican and a swollen arm would be catastrophic for me.

                      The strange thing with lymphedema is that not everyone gets it. I have a friend who's a 17+ year breast cancer survivor who had all the lymph nodes removed from each arm pit and has no lymphedema. Others have had less extensive surgery and have gotten it. 

                      Education and being proactive are going to be your best tools in keeping this to a minimum.

                       

                      • June 29, 2017 at 2:31 pm
                      MovingOn
                      Participant

                        Maybe I'm missing something but shouldn't the first step be a sentinel lymph node dissection?

                        Then if it is positive for Mel. you would consider removal of the remaining nodes.

                          • June 30, 2017 at 9:10 pm
                          Linny
                          Participant

                            It is, if you don't have an unknown primary, which is what I had. I had a CLND in the left axilla. When I asked why I wasn't offered a sentinal node biopsy I was told it was because they weren't 100% sure which node was the sentinel node because there was no mole from which to trace the cancer cells. 

                            So, folks like you and I are in a really weird position.

                            • July 1, 2017 at 2:55 am
                            MovingOn
                            Participant

                              That makes a lot of sense. Thanks.

                              For my CLND I have had maneagable lymph fluid buildup. It seemed to build up about 2-3 months following the surgery. But by the 5th month it doesn't build up anymore unless I really stress out my neck with lots of movement and carrying heavy things. 

                            • June 29, 2017 at 4:10 pm
                            Patrisa
                            Participant

                              My father had node removal under his arm ( not the dominant one though), no lymphedema at all…

                              Good luck,

                              Patrisa

                              • June 29, 2017 at 4:10 pm
                              Patrisa
                              Participant

                                My father had node removal under his arm ( not the dominant one though), no lymphedema at all…

                                Good luck,

                                Patrisa

                                • June 29, 2017 at 4:10 pm
                                Patrisa
                                Participant

                                  My father had node removal under his arm ( not the dominant one though), no lymphedema at all…

                                  Good luck,

                                  Patrisa

                                  • June 30, 2017 at 12:30 am
                                  CindyJ
                                  Participant

                                    My mom had really bad lymphedema in her leg after removal of groin nodes. We had two different message therapists. If you go this route be sure they don't massage too hard, the one pushed all the fluid up to her abdomen and it had to be drained. It fixed it though. 🙂

                                    • July 1, 2017 at 4:50 pm
                                    Speedster
                                    Participant

                                      I had the same proceedure you're considering back in January of 2015 and I was blessed to have no problems at all with Lymphedema.   

                                      From this study: http://www.cancernetwork.com/cancer-complications/lymphedema-separating-fact-fiction 

                                      "The authors’ analysis of these studies demonstrated the overall incidence of lymphedema to be 16.3% after melanoma." 

                                       

                                  Viewing 11 reply threads
                                  • You must be logged in to reply to this topic.
                                  About the MRF Patient Forum

                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                  Popular Topics