Hello, lymphies! I hope you all have had a relaxing and happy holiday season, and are excitedly preparing for the New Year.
Recently, I’ve asked readers to send in ideas for posts and things that they would most like to see discussed, and a majority of you said you’d like to learn about the different types of lymphedema out there. What is the difference between primary and secondary lymphedema? What is cancer-related lymphedema? Where on your body can you become affected? Let’s explore these questions together!
Primary Lymphedema
Primary lymphedema is a congenital abnormality caused by malformations of the lymphatic system, and can be present at birth or may develop later, during puberty or pregnancy. It is most common in the legs, but also may occur in the arms or torso.
Secondary Lymphedema
Secondary lymphedema results from damage to the lymphatic system through traumatic injuries, surgical procedures, infections, etc. The most common cause worldwide is a parasitic infection, where the parasite lodges itself in the lymphatic system, obstructing lymphatic vessels and disrupting lymphatic flow (CancerQuest.org). Secondary lymphedema occurs most commonly in the arms but also can develop in the legs.
(This is the kind I have, from a cast on my leg that was too tight as an infant.)
Cancer-Related Lymphedema
In the United States, nearly all cases of secondary lymphedema are cancer-related. This is due to surgical procedures such as mastectomies, lumpectomies with radiation, and the removal of lymph nodes. Lymphedema is frequently associated with breast cancer, prostate cancer, pelvic area cancers, lymphoma, and melanoma, with breast cancer being the most common cause of cancer-related lymphedema.
From CancerQuest.org:
Because the lymphatic system is found throughout the body and carries fluid and cells, it can serve as a ‘highway’ for cancer cells migrating away from a tumor. When a tumor is removed, lymph nodes in the region are often removed as well, and examined for the presence of tumor cells. For many cancers, this is a routine part of the staging and treatment process. Radiation therapy used in treating cancer is often aimed at the lymph nodes in an effort to destroy any cancer cells that have drifted away from the tumor. These treatments can damage the lymphatic system resulting in the collection of lymphatic fluid in body tissues and results in swelling of the arms, legs, or trunk.
Where does lymphedema occur?
Lymphedema most commonly occurs in one arm or leg, but it can be present in both arms and/or both legs. It can also occur in the hands, feet, chest, back, neck, face, abdomen, and genitals.
For more information, check out Lymphedema People, which has a large list of different types of lymphedema as well as different disorders and diseases that are associated with lymphedema.
What type of lymphedema do you have? When were you diagnosed? If you feel comfortable sharing, please consider contributing your story in the comments section below.
I have Secondary lower limb Lymphedema, in left leg, I attend hospital monthly for MLD . The leg can get painful due to the weight of it , I have a Lympassist machine which I use frequently to massage the leg. It is a disabling condition. The cause of it was an operation to remove lymph nodes in 2005 because of Stage 2A Nodular Sclerosis Hodgkins Disease from which thankfully I am presently in remission. Anyone out there with the same condition try to rest the leg when you can, don’t restrict it with tight clothing or long car journeys, take a break to walk around and if intending traveling in a plane ask your therapist or Doctor first.
Norma, I’m glad to hear you are in remission and taking care of your leg! I know it can be difficult but the best thing we can do is really make our lymphedema care a priority. Thanks for sharing your story, be well!
I have had primary lymphedema for 45 years. For much of that time I have had it in just my left leg. Incorrect diagnosis and treatment allowed my left leg to get pretty large. When I discovered comprehensive decongestive therapy wrapping and manual lymph drainage massage in 2009 I was able to begin the long process of bringing that leg’s size back down. About that time iwas told that the “swollen ankle” I had seen in my “good” leg was also lymphedema. It seems that primary lymphedema rarely affects just one limb, so in reality I was lucky for all those years to have had only one leg to deal with. Today the second leg is in great shape and needs only an over-counter thigh-high Juzo to keep it under control.
What Alexa says about other areas sometimes being affected is also true. At Thanksgiving I discovered lymphedema had also reached my genitals. Trust me when I say having lymphedema here is a very significant problem. Get it under control as soon as you can. I saw a new CLT who had a little experience with lymphedema in the man-parts down there. She gave me specific wrapping and massage techniques which are helping. Maybe it will subside in a few more weeks if I stay on it. That seems to be the best approach to any of our lymphedema woes: train yourself, equip yourself with knowledge and skills so that you can effectively respond yourself to your body’s specific lymphedema situation. And I was reminded by my new CLT to be sure to keep up my MLD at home every day. Especially now through the inguinal nodes to direct fluid up and away from the genitals. I keep telling myself I can manage this – as long as I have the skills and desire to do so. It is the desire part that takes the beating from this unrelenting need to keep managing my condition every single day. I do appreciate and fully understand how easily we can get discouraged by this. And I do let myself relax too often and just ignore my MLD or wrapping. Then have to catch up. It is a difficult thing to stay focused on it but in the end we must if we value our own health and well-being.
Be well.
Jim – first of all, it’s great to hear from you. Second of all.. I’m so sorry to hear your lymphedema is spreading. You’re right, though, in saying that the best approach is to equip ourselves with knowledge and to keep up MLD and compression.
Since I’ve been home, I’ve been neglecting my care a lot. I’ve been bedridden the past couple days with tonsillitis, so at least my leg is staying somewhat elevated, yet I haven’t worn my stockings in weeks. It’s so easy to forget about it, to put it on the backburner or delve into denial. But – as you said – we have to keep up with maintenance in order to value our health and well-being.
Best of luck to you! Keep us posted.
Cancer-Related Lymphedema (secondary lymphedema) is what I have been dealing with, post Isolated Hot Limb Perfusion for Melanoma Stage III 3B April 2011. (4 nodes removed).
After several appoints with LLT, my husband was taught how to wrap the 9 layers of compression, which at times was re-wrapped 3-4 times each day. After 8 months of wrapping at night now wearing Juzo night garment and a custom one legged pantie for daily compression.
I can’t express the importance of daily attention to self massage, exercise and the wearing of compression garments.
Constant movement for me now is key… along with daily attention to self massage for managing the swelling.
Hi, Janet. I’m so sorry to hear about your situation, but you are lucky to have a husband to help you with your treatment. Keep up the good work – it sounds like you’re on the right track. Best of luck to you!
Mine was caused by removal of lymph nodes after chemo/radiation on a tumor above my vocal chords. Difficult as I am a jazz singer. Diagnosed 10/10. After the surgery swelling in my face never went away. After a month or so I was finally sent to a therapist who told me about lymphedema. My surgeon never mentioned this possibilty. She also left a steri strip in my neck which just last month worked it’s way out of a hole in my scar that wouldn’t heal. needless to say I am in the process of getting a new EMT doctor. Anyone ever heard of such a thing happening? She was planning on doing a skin graft over the hole. What would this have caused? I had nothing but infections in the hole and cellulitis all summer due to this bandaid being left behind. It put all of my therapy on hold so I hav had the side of my face looking like a chipmunk, sores from biting my cheeks and tongue due to swelling and my eye swollen completely shut for months. Surgeon has never returned my calls about the steri strip – got my messages and just said OK. Should I sue? Nothing really happened only “could haves”. This has been an incredibly difficult year. Cancer treatments were hell enough without extra complications. Finally back to work but the wk doc will only let me work part time, which only covers my deductions. Thankfully healthcare is paid for by this but I have little income. Thank God for my boyfriend of almost 12 years and my Mom. They are why I have survived. My last scan in October was unreadbale due to movement, but they didn’t see anything worrisome. So stressed uout I’ve started smoking again and I’m terrified that this will cause more cancer on the other side of my neck. Resolution to quit! It’s just stupid, but it’s a crutch I suppose. I have 2 different compression masks. One spandex covers the whole face and head, in cheetah print and another in Baltimore Ravens purple. My head looks like a giant grape in this one!. Very uncomfortable as it’s sooo tight and I can’t see once on. The other is “stuffed” and has an seperate eyepiece. Much more comfotable – Solaris. Just use the eyepiece. The swelling in my face and throat has caused my epiglottis to not work properly so I’ve been on a feeding tube since May and cannot swallow or eat. Trying to remain positive and thanking God for all of the little things that are good. Not to mention just life itself! I am so thin in the rms and legs – lost 55 lbs. that I look like a holocaust victim. Hard to go out in public. Still can’t sing but voice is slowly coming back and I need this so badly to have an outlet to express myself. I’ve been a musician all of my life and it’s hard being forced to hush. But I just don’t have a voice yet. Thanks for letting me vent! Have a wonderful, safe and healthy New Year! ~ Julie Bauer
Julie – first of all, thank you for sharing this, and for being so unselfish in sharing. You probably helped a lot of people on here by being so open, including myself, because it really put things in perspective for me.
I have been thinking about how to respond to this since you’ve posted it, as you really had me floored. As trite as it sounds, I’ve always been a true believer in that everything happens for a reason. Everything that happens to us, every burden and misfortune and joy and triumph, has some sort of purpose. When it is shared – like I try to do with this blog and what you have done by commenting – it becomes inspiration for others, and therefore serving said purpose!
I wish you could sue that doctor for leaving a bandage in there. That’s really disconcerting that that happened in the first place, and the fact that it has caused you so many problems and complications is even worse. You have been dealt a tough hand, it seems, but you are right in trying to remain positive because there are always, always people out there who have it worse than we do, no matter how badly we feel we have it. And, conversely, there is always something to be thankful for.
You should really stop smoking, Julie! You don’t want to flirt with fate, or exacerbate your current condition. Please, please try to quit. I know it’s hard but it is ultimately for the best! I don’t mean to be lecture-y but it really is important that you quit and find some other coping mechanism. I know singing is a big form of release and catharsis for you, but while you’re waiting for your voice to strengthen and return, perhaps you could find another form of expression? Drawing, writing, knitting, sculpting.. anything that can keep your hands busy while your mind can calm itself.
I wish I could help you more. Please feel free to vent on here whenever you need to! Lymphies need to stick together and support one another, after all. Best of luck to you, and I will be sending lots of good thoughts your way!
PS I love the choice of cheetah print and Ravens purple! Leopard print is one of my favorite prints out there, and I’m from Baltimore and therefore a Ravens fan :) You got style! If I could get leopard print compression garments, I’d be over the moon.
Thanks – you’re such a pick me upper! :) Google around – there are places that make compression garments in any pattern/color/print you want! I think you said you nuse garments for your legs and I need the ones for the head. I’ve seen one really cute company on line called Lymphedivas but I think they only do sleeves and gauntlets. Tattoo promts and leopard – you name it. Expensive but adorable.
Wow. Julie and Alexa you two are amazing how you pick yourselves up and keep on going. Just when I was feeling sorry for myself with my new lymphedema I get a shot of wisdom from you both. Thank you.
Now I just need a garment cover that’s suitable for a man – who likes to bicycle a lot – got any ideas?
Be kind to yourself and others….Jim
coach 広島
Nice to have found you all. I have Lymphadema in my left foot … pretty shoes are a thing of the past. Not sure what caused it though the culprit is probably a crush injury sustained a couple of years ago. I’m lucky the swelling subsides a lot at night so I can wear a toe cap and stocking during the day. MDT works well and I’m keeping my fingers crossed it doesn’t get worse. Dr sees some in my right foot which might make it primary … we shall see. I’m 53.
I admire the positivity radiating from this blog.