Abdominal Lymphedema Only
Hi! I am 5 years out from initial BC diagnosis (IDC + IMPC, 24 nodes +, Stage 3C, ER/PR+). I had a right breast mastectomy which soon developed into a massive infection requiring me to wear a Wound Vac Machine for months.
Not only did my right arm develop LE, but so did my abdomen ON THE RIGHT SIDE ONLY. I knew right away that the swelling in my abdomen was from the LE, same as my arm. That, and maybe the infection. Yet, it took several years before my docs FINALLY acknowledged that FACT. But, prior to that, my concerns and questions were repeatedly dismissed. All they could see was that I was overweight. They weren't used to seeing this specific SE, I guess. Their lack of familiarity sure didnt help me!
I want to hear only from women with abdominal lymphedema. Like I wrote, it is now 5 years later and at age 64, I look pregnant, especially when viewed from my right side. Anyone had their abdomen drained? Did it help? Pros & Cons? Suggestions?
Comments
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What do you mean by "abdomen drained"? LE is not something you can stick a needle in and pull fluid out. The fluid is in the tissue, not in a 'pocket' that it can be pulled from
Are you doing MLD (Mannual Lymphatic Drainage)? Do you use compression garments? They come in designs for all parts of the body or you can wrap.. Do you have a pump/machine? My LE is only in my arm but my FlexiTouch includes upper leg, abdomen, chest and down arm to fingers.
If your LE Therapist is not dealing with all of you it might be time to look for a differemt one. I would but then that's just me.
added: How active are you? As we get older (I'm 68 and 5 yrs NED IBC), it is a lot harder to keep a flat 'tummy'. I'm very active but have to work a bit harder during winter at the gym to keep 'fit'. Our winters are brutal here so can't get outside doing as much as I do during the summer.
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I also have this problem. Been living with it for five years. Have never found anything that helped. I had trans flap, infection and also had months of wound vac. Just one problem after another. I feel for you, because this problem with stomach is harder to live with than the screwed up breast!
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Welcome, both of you "stars"!
I can just imagine what a struggle it would be to convince a doctor that you're dealing with abdominal LE, when so many of them can't identify garden-variety arm LE, not to mention upper truncal. It is rare with bc treatment, but certainly not unheard of. I have some abdominal LE too, also mostly on my right side (my LE is bilateral in both arms and trunk, but worse on the right).
It's hard to make suggestions without knowing what you've already tried. Do you both have well-trained LE therapists? Have you been taught to do Manual Lymph Drainage with emphasis on the abdomen? Are you clearing neck and groin nodes at all throughout the day? Do you wrap your arm? Has your therapist taught you other practical helps, like staying really well hydrated, using deep abdominal breathing, or doing simple LE exercises at intervals throughout the day? I can manage my abdominal LE with just those measures (and I wear a WearEase cami called a Slimmer that also adds gentle abdominal compression), but many people with abdominal LE use biking shorts to control swelling. It's also possible to order custom abdominal compression garments, but I'd sure try the other methods first.
Lots of things can affect abdominal LE, just like arm LE. Barometric pressure changes, extreme temperatures, lack of exercise, the wrong sort of exercise, weight gain, and for some people salt intake and alcohol. If you can identify triggering mechanisms, that can help your therapist design a self-care program that will help you take control of this and get your life back.
If you need a new therapist, or even just a second opinion, here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified...There are a couple of suggestions here for abdomen/upper leg compression--they'll give you an idea of what kinds of garments you can look for:
http://www.stepup-speakout.org/Compression_camisol...And here's a discussion of Swell Spots and other garment inserts--the one on this page are specifically for upper body truncal LE, but they are designed as well for use with abdominal swelling:
http://www.stepup-speakout.org/foampadding_swellsp...StellaStarr, LE is lymph fluid that is trapped all over in the tissues, not pooled like the fluid in a seroma that can be drained. The way to drain the lymph fluid in LE is to clear nearby nodes and gently move the fluid out of the area and toward the nodes by the manual technique of Manual Lymph Drainage (MLD). A well-qualified LE therapist will be able to design a personalized flow pattern for your situation to effectively move that fluid out. Then compression garments keep the fluid from building up again. None of this is easy, because LE is chronic, but practicing some self-care does give us back control. Insist on getting the great help you need!
Gentle hugs, and please, both of you, tell us how we can help,
Binney0 -
I suspect you are right. The surgeon who led me to believe that they sometimes "drained" the excess fluid (and in my imagination I thought he meant by sticking a needle in me and sucking the fluid out.... think turkey baster! )....was the same surgeon that told mefor 2 years that there was no such thing as abdominal or trunk lymphedema. And it most assuredly exists! So if I sounded stupid, then thank my surgeon. Also, the area that's most swollen from fluid starts right under where my breast was, down towards my stomach/abdomen. Doing tummy crunches and other exercises does not help that area.
I have read tons about lymphedema. I hate the compression arm garments, but I do perform lymphatic massage on myself. So-so results.
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Now that I know more:
OK, so I used the wrong terms, ala draining my bulging lympho stomach (wrong) vs. draining a sissy seroma (right). OBVIOUSLY, my dear surgeon was most likely referring to draining a seroma -- BUT THAT'S NOT HOW HE STATED IT as he looked at and prodded my swollen-with-lymph-fluid trunk. The fact is, he did nothing about it either way. All I was ever told about was ARM lymphedema. Went to several lackluster PT appts back in 2009. First PT had some...emotional/anger issues...hard to connect with. Later I found out this PT was known for her harsh, surly attitude (so why inflict her on patients that are already dealing with major issues?). Second PT was much more helpful. Showed me how to gently massage my own arm. Hooked me up with an arm cruncher from hell and was done with me. If the quality of my life was poor before the compression sleeve, it sure as heck tanked even further using that Dark Ages contraption. What I really needed was manual lymphatic massage from a professional. On a regular basis until it improved. And with something done for my one-sided blooming stomach! At 64, I look decidedly pregnant ON ONE SIDE. I must buy clothing up 2 sizes larger to accommodate that ONE SIDED BULGE. I cannot fly on a plane because even if I can squeeze my bottom into those ever smaller seats, I can't put the seat belt over my ONE SIDED BULGE and buckle it without a lot of embarrassment -- and pain. Only NOW have I begun to understand that that lymphedema tummy bulge could have/should have been appropriately detected and treated beginning back in 2009.
A few weeks ago, suddenly out of nowhere my right LE arm became more swollen, very painful, dull & achy, etc. My right hand and baby finger became numb and tingly. I could not use my hand! My pain came in cycles, lasting about 3 hours at a time 3-4 times a day. My pain level was 8-9-10 on a 1-10 scale. NOTHING HELPED IT. I knew it was the LE!
BUT -- Because I now have a history of blood clots from the Aromasin, I was sent to ER for an ultrasound. It was hell. Long story short, after probing deeply in my right armpit for 2.5 hours, 2 techs and the Vascular Guru decided that it wasn't a blood clot, though it could be a lymph node. Holy Cow! Lymph node! But that was not their concern. Only the possibility that it might be a blood clot caught their initial attention. So they sent me home. All that prodding sent my armpit, arm, and hand into wretched agony for 3-4 days. My Primary doc was supposed to refer me to PT, but did not. I had to remind her several times to do so. I now have an appt next week and I intend to push for THEM doing regular LE massage: arm and trunk. Wish me luck.
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Stella, you'll want to make sure the therapist you see is fully trained: at least 135 hours of specifically LE training beyond her/his PT or OT certification. Ask also about experience, especially experience with truncal LE. There's no point in seeing someone who doesn't have the expertise to help!
Let us know how it goes, please!
Gentle hugs,
Binney0 -
Fast forward: Now that I have had a number of lymphatic drainage massage sessions (by yes, a TRAINED therapist), I can speak with a little experience: Doesn't help much beyond that day. I was on the right track with my initial vision: a turkey baster-like device that sucks out the fluid build-up. Now THAT makes more sense to me than gentle massage that barely moves the excess fluid. And to top it all off? My arm lymphedema is WORSE than ever and I have now developed an allergic reaction to the compression sleeve! A BAD reaction! On my lymphedema arm. Not healing too well either as one can expect.
NOTE: Look, Ladies, I am well aware that at my age and weight, a flat stomach is a fond memory. But what I have is what I described: My right stomach-abdominal area is way bigger than my left. I tried several LE camis and OMG! Awful results. I did find that an "open" spanx-like cami works wonders, however. Well, I feel & look better, that is.
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Have you seen a Dr about the other possible causes for your abdominal swelling issues? 'Belly' (or other area swelling) can be an indication of MANY other health issuesthat need to be addressed.
Do you have or have used an MLD machine? These are designed to simulate MLD. My FlexiTouch covers the upper leg/lower body, upper body/chest then arm. They are available for any part of the body that has LE issues.
LymphEdema is not a 'pocket' of fluid (seroma/blister/etc) that something (turkey baster) can pull out. A pocket of fluid can be 'pulled out of the pocket' but LymphEdema is not a pocket - it is fluid in the individual cells.
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Aagh! I "get" what LE is. I "get" it that LE is not a seroma or a blister, but is fluid trapped in the cells; gazillions of fluid-filled cells just hanging out together with no place to go. My one-sided belly balloon is their Party Central. And by now, I sure as heck "get" it that a turkey baster won't fix it. BUT I WISH IT COULD!
Thanks to all for the helpful advice, like the mention of a MLD machine. THAT info I appreciate.
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Hello. I finish rads tomorrow but noticed since last week a lot of upper abdominal bloat. My treated rt breast feels swollen as well. I was afraid I had liver mets but my onc doesn't think it is based on blood work and his observation. I'm frustrated as this issue just popped up and docs don't seem to know a lot about LE.
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Hello I have abdominal LE not caused by breast cancer.
I find that compression makes me worse, and my MLD specialists agrees. She has one other abdominal lymph patient who also finds compression exacerbates it. That said, my vascular physician recommended walking in chest-high cold water. The water acts as compression and I find this effective. Similar to MLD the effect is not sustained but it does bring it down and helps me to 'manage' it. I avoid saunas and Jacuzzi.
I have had the green dye mapping and found that also helpful, MLD has changed from pushing lymph around to gently stroking the areas where I have channels. Hivamat also works, again I focus on where I have identified channels. What I found most helpful with the green dye (indocyanine green dye lymphangiography) was it explained why I react in certain ways, for example, my channels in the left groin drain to the right, which explained when MLD pushes fluid below my belly button down to the groin I flair, even though it should work. I have an option for a node transfer but I am waiting until the key centre in my country has more experience.
I have also found an amazing physio who specialises in Myofascia release and I now rarely need MLD unless I flair. I have found this to be enormously effective and my understanding is that my obliques grip and this interrupts the lymph flow. I find sitting upright makes me flair and it is because my muscles grip, lying down helps. Nothing makes me 'flat' I just have varying degrees of swollen and my expectations have changed from 'flat' to management. I also do pilates for the deep breathing.
There is an increasingly belief that LE has an inflammatory component and positive feedback from people following a keto diet on the effects on their LE. I haven't gone down this route as my inflammatory markers are checked annually by my immunologist and vascular physician and I don't have any evidence of inflammation. If it wasn't for my love of carbs I might give this a go, and I might still at some point.
I also second the earlier point that you are worked-up for other conditions, for example, ovarian cancer can manifest in abdominal swelling so my clinicians regularly check that my abdominal LE is not masking symptoms of this.
Hope some of these strategies help others
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Mathilda. I find this so interesting. I hope you post once in a while. You are educating us! Thx so much.
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Hi Mathilda
What were your symptoms besides swelling? How did you get it? Thank you!
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Hello abdominal surgery kicked it off but I had some symptoms prior that developed during early pregnancy (weight of the baby) so I think I had a compromised / sluggish lymph system and the surgery tipped it over the edge. My symptoms was swelling that just didn't resolve but would ease overnight and then worsen during the day. When I was very swollen, my stomach would be very hard and I would be in a lot of pain as my organs were being 'squished'. My Drs were saying just give it time, but I felt it was unusual. I kept pushing for answers, had multiple scans to discount other causes. I self-diagnosed lymphedema as the scans showed it wasn't ascites, gas or other fluid build-up, so in my mind the only other fluid could be 'fluid in the cells'. I found a physiotherapist who specialises in treating oncology patients with lymphedema and I responded to MLD. She recommended I see a vascular physician. In the meantime I had acupuncture and had blisters on my abdomen filled with yellow fluid around the area where I have no sensation (post surgery). The vascular physician, who is an older very experienced Dr, took my history, saw the scars and photos of the blisters and said he thought it was lymphedema. He sent me for a lymphoscintigraphy scan. I was initially diagnosed with primary but over time it is clearly secondary. I was diagnosed within 5 months of symptoms. I have been very proactive in getting a diagnosis and also in my treatment. Abdominal is considered rare but I think there are more than people realise and it gets masked and considered to be weight rather than fluid. Hoping you find some answers and I appreciate the warm welcome despite my lymphedema not resulting from breast (or other) cancer.
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Thank you for sharing!
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I just saw your current post as well as some posts and thank you to all for your voices for such a perplexing problem. It really increased my understanding. Here's what I found so that was interesting to me based on your comments as well as another health problem that just may be related. Here goes:
In my situation, my LE extends from my face to my groin ON THE RIGHT SIDE ONLY. Yes, I am fat, but there is a clear difference in the size on my right side vs my left. MLD and CDT have not improved my significant abdominal LE beyond a temporary softening under my mastectomy incision (with minor reduction in size temporarily). Flexi-touch pump makes it worse. Truncal Compression garments are a joke for me.
Add to that lovely scenario: I was on Aromatase Inhibitors for over 5 years. Ended in fall 2014. In the past 2 years, I have also experienced 4 episodes of post-menopausal vaginal bleeding with no known cause. Recent blood tests revealed high CEA, high CRP, ESR doubled in 6 months and is now a high normal, high neutrophils, rising WBC, low lymphocytes, and a new test for me LDH which is either high normal or high depending on whose chart you look at. CT scan didn't show anything, but then I can't take the contrast dye. Beyond ordering the tests, my Onc and Primary Care providers did NOTHING -- despite the abnormal test results (which a home health visit doc said was disturbing0. Didn't suggest I see an OB-GYN. Nothing. I had to get my own OB-GYN and make an appt. In the interim, I bled a 4th time a few weeks ago. Two bleeding episodes in one month!
To add to my delightful life, I also have an open wound at the mastectomy site which oozes YELLOW fluid. My Wound Care team says its lymph fluid. I have had this open wound for over 2 years which is due to suboptimal CDT treatment by a certified LE-PT. I now wonder if my truncal/abdominal LE is part of the bleeding problem. I have also researched the use of AIs and post-menopausal bleeding and the research is limited although it tends to suggest that AIs are less likely to cause the bleeding, but it still happens for a few women on AIs. No provider has even asked about the AI usage and its possible connection to the bleeding. No provider has wondered if my rampant abdominal LE is somehow involved. If anyone has a similar story, please share. I am at my wits' end.
So much is still unknown about secondary LE. Without sharing our experiences I suspect many of us would be far worse off then we are now. Thank you all for your strength in the face of this chilling disease and its aftermath.
Cheers to all.
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Stella and Other Gals.... I have trunkal LE; left arm and hand LE. It started after my L breast MX and breast reduction on my right side. I had a total of five surgery's that started in 2014. My last surgery was in January 2017. After my MX when it was discovered I had LE I got treatment from a licensed LE Massage Therapist through my oncologists recommendation. My arm and hand went back to normal size. I was using my compression garments for hand and arm. In 2016 during an oncologist visit the PA asked if my distended belly was causing me any pain or discomfort. At the time I said no and chalked it up to the 70lb weight gain during cancer treatment in 3 yrs. In 2017 my oncologist discovered I had trunkal LE. That my LE from 2014 had progressed from Stage 1 to Stage 2 and had gone into my trunk. Quietly my LE was getting much worse. I had no idea until I started experiencing rib pain. I am a Licensed Massage Therapist and was working allot of hours back then. My oncologist told me I had to stop working so much. I did. Despite losing weight my belly is still very distended and hard like I swallowed a beach ball. I had my gallbladder removed last month and that has caused some relief. I am also having spotting now everyday for about three months. I have a uterine biopsy scheduled for the 28th. I will be having either a normal full hysterectomy or an oncological one depending on the results. I am seeing a vein doctor on the 24th because I have developed vericose spider leg veins but just on the left leg. Like you I have the weird bleeding and one sided lymphodema. I had reconstruction surgery on my right breast and have had no lymphodema on that side. After my gallbladder was removed my lymphodema was horrible. My ankles swelled up terribly. I chided the Doctor into letting me leave the hospital early so I could get to my LE massage appt. My ankles were so swollen I could barely walk. I have been on Tamoxifen since dx. Not sure what it is but the abdominal swelling is weird and disconcerting. The endless spotting / bleeding is scary.
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Bcky: I feel your angst. The thing is, that -- well, among other things -- not a whole lot is truly known about truncal LE. LE in the abdomen is even less understood or even identified as such by many providers, including LE certified PTs. We sufferers are in new territory here with little guidance. Like you, my (right side in my case) abdomen is distended and hard as a rock, although it softens with about 30-45 minutes of MLD focused mostly on my lower LEFT groin area. I have gallstones, but don't need surgery yet (not that I know when I would need it). I also was a massage therapist many years ago, so I do know a bit about the body. Another thing we have in common: I gained over 30 pounds in record time once I started Aromatase Inhibitors, those evil drugs from hell that I was on for over 5 years. I gained another 30 pounds in record time back in 2015-2016 when my LE was improperly treated with poorly done CDT bandaging which led to repeated episodes of cellulitis (about 11) which increased the size of my arm and trunk each time. My upper arm ballooned to 27.5" in 2016!!!! Before my cancer diagnosis and treatment I had a waist, but I have NO WAIST at all now. I am a big butter ball. My life is hell. Finding real treatment has been a nightmare. Regular MLD and CDT do not help much at all and has often made it far worse. I tend to read a lot of medical journal articles for fun. LE can lead to the deposit of adipose tissue that won't go away on its own. However, certain surgeries have been highly successful in reducing LE -- so much so that some woman can forego compression garments following surgery! Something to think about.
Your spotting is a concern, of course, and I hope your doctors are more interested in finding the reason than mine have been. You do know tamoxifen has been linked to vaginal bleeding, yes? AIs seem to show less linkage to vaginal bleeding than tamoxifen, but some women on AIs do get it nonetheless. Perhaps I am in that rare group that is affected with (post-menopausal in my case) vaginal bleeding while taking AIs. Shouldn't happen, but it can. And again, not much is known about this subject. None of my health providers have ever questioned whether or not my rampant LE (especially in my trunk and abdomen) and 5+ years on AIs could be part of the problem. The tendency of doctors is to blame one's weight for all health problems, but that is a cop out. For example, I don't have any cardiovascular problems, nor high cholesterol or diabetes. Those health conditions are often linked to being fat. So maybe my extra weight is the reason I don't have those issues? Just sayin', lol.
Right now I am gearing up to request a referral to Dr. Stanley Rockson at Stanford in CA. He is known for his expertise in all things LE, including Lymph Node Transfer and SAPL. If anyone can figure out how best to treat my arm/abdominal LE, it's him.
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Oh Great! Keep me posted after you see the Doctor. It is all so life altering and just plain old hard.
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Bcky;
It's been awhile, but I wasn't a candidate for the Stanford LE surgical treatments. Unfortunately. So that was that last year. Since then, I went back to Kaiser (KP) in 2019. But between Aug 2018 and Jan 2019, I continued to see this exceptional LE-PT, private practice in another county/city. SHE is the ONLY LE-PT that understands how to treat truncal LE! The. Only. One. Not one of the many LE-PTs I saw from my 2 different health plans was capable of treating me effectively. In fact, several made it far worse. No matter what I tell the health plan PTs, they just don't understand or have the skills/experience to treat me effectively. I even asked many of the health plan PTs, no, begged them, to call the private practice PT and ask what she does differently than they do. They aren't interested for the most part. Maybe one actually called this wonderful PT.
I had a KP appt 2 weeks ago, after another bout of cellulitis -- the first episode since 2017. Sure enough, like ALL the other times, my LE worsened. My abdomen/trunk and under my mastectomy scar are huge. I am having trouble BREATHING. I have no clue what to do about that. I mentioned it to me LE-PT at the last appt, and as always....not much comment. Her MLD just made it worse! I feel I need to be on oxygen. Which I will mention at my next KP appt. I plan to also ask for Lymphoscintigraphy, which I hear is very painful. I sure hope your Journey has been easier than mine since last August 2018!
I'd like to hear from others with breathing issues due to LE and what you did to find relief.
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