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Joachim Zuther, Lymphedema Specialist. Read more
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Lymphedema Affecting the Breast and Trunk

 

Lymphedema affecting the chest, breast and posterior thorax, also known as trunkal lymphedema, is a common problem following breast cancer surgery, but is often difficult to diagnose, especially if the patient does not also present with lymphedema of the arm, or it may be dismissed as a side-effect of  breast cancer surgery, which will resolve by itself over time.

While trunkal lymphedema is often not reported, poorly documented and available studies are not easy to compare, the literature suggests an incidence of up to 70% of lymphedema affecting the trunk and/or breast following breast cancer treatment.

Given the fact that the breast, anterior and posterior thorax and the upper extremity share the axillary nodes as regional lymph nodes, it is predictable that disruption of lymphatic drainage pathways by partial or complete removal of axillary lymph nodes, with or without radiation therapy can cause the onset of swelling in the chest wall and breast on the same side. The swelling can either be subtle or quite obvious in presentation and may be present with or without swelling in the arm.

The disruption of the natural lymphatic drainage pattern is further complicated by scars on the upper trunk wall following lumpectomy, mastectomy, and reconstructive breast surgery, biopsies or drain sites. Fibrotic tissues in the chest wall or armpit following radiation treatments may further inhibit sufficient lymphatic drainage.

Certain breast reconstructive procedures, such as the TRAM-flap reconstruction also disrupt lymphatic drainage in the abdominal area, which may cause the onset of additional swelling in the lower trunkal (abdominal) area.

Like lymphedema in the extremities, swelling affecting the breast, chest and posterior thorax is typically asymmetrical in appearance if compared with the other side. However, there are often other symptoms present prior to the onset of visible swelling, which may include altered sensation (numbness, tingling, diffuse fullness and pressure, heat), pain and decreased shoulder mobility. Once lymphedema is visibly present, the swelling may include the entire thorax wall, or may be localized to the armpit, the scapula, the area over the clavicle or around mastectomy/lumpectomy scar lines, around the reconstructed breast or implants, or it may be limited to the breast tissue only.

The breast in patients who underwent lumpectomy or reconstructive surgery may be larger and heavier, or the shape and height of the breast tissue may change due to fibrotic tissue, resulting in added psychological distress due to problems involving clothing, bra fit and body image issues.

Post-operative swelling following breast cancer surgery is to be expected and generally lasts up to about three months; it appears almost immediately following surgery and places additional stress on the lymphatic system by contributing to the lymphatic workload. The difference between “normal” post-operative edema and lymphedema is its perseverance following the completion of treatment, and the presence of changes in tissue texture, such as lymphostatic fibrosis.

skin fold caliper

While several methods are available to assess trunkal and breast edema (skin fold calipers, bioimpedance), subjective examination of the anterior and posterior aspect of the thorax and breast focused on the observation of signs of swelling (asymmetry, bra strap and seam indentations, orange peel phenomenon, changes in skin color), palpation of the tissue texture and comparison of skin folds between the affected and non-affected side, remain the most practical means for assessment of lymphedema affecting the trunk. Serial photographs depicting the anterior and posterior view are helpful tools in assessing changes before and after treatment.

Most of the symptoms associated with trunkal lymphedema can be treated successfully with Complete Decongestive Therapy (CDT), to include Manual Lymph Drainage (MLD), especially if combined with self-MLD, skin care, exercises and compression therapy. Fortunately, trunkal swelling responds well to treatment, often with markable improvement within 10 treatments. Treatment may be necessary only during the initial period following breast cancer treatment to facilitate edema removal and wound healing, or it may be applied at a later point; trunkal lymphedema with or without the involvement of the arm may appear at any time following surgery for breast cancer.

Manual Lymph Drainage: In case of localized trunkal lymphedema without involvement of the arm, MLD techniques concentrate on the neck, the anterior and posterior aspects of the upper trunk, as well as the inguinal lymph nodes, followed by techniques focused to redirect lymphatic fluid from congested areas into areas with sufficient lymphatic drainage. If necessary, additional techniques aimed to soften fibrotic tissues may also be applied.

For patients who underwent TRAM-flap procedures, careful attention should be given to address scar tissue that could lead to trapping of lymphatic fluid.

During the initial stages of the treatment, patients should be instructed in self-MLD and encouraged to perform self treatment for at least 20-30 minutes daily.

Skin Care: Patients who have lymphedema are susceptible to infections of the skin; areas between skin folds or the underside of the breast are particularly prone to skin damage and infections. Edematous areas should be kept clean and dry and suitable ointments or lotions formulated for sensitive skin, radiation dermatitis and lymphedema should be applied.

Exercises: Trunkal lymphedema is often associated with restrictions in thorax and shoulder movements, which should be evaluated by a Physical or Occupational Therapist. Specific exercises addressing these issues and to increase range of motion and function with daily activities should be performed.

Depending on the location and quality of scars, mobilization of adhered scar tissue by a qualified therapist may be necessary to improve range of motion. Breathing and aerobic exercises further facilitate decongestion by improving drainage in superficial and deep lymphatic pathways.

Compression Therapy: Oftentimes compression of the affected area may be challenging due to tenderness of the tissue, or irritated skin secondary to

compression bra

radiation therapy. However, in order to address fluid accumulation and to avoid worsening of the swelling, the application of compression bandages and/or compression bras or vests is very important. Compression bandages are applied circumferentially around the chest with special care not to impair blood supply to grafts and/or healing scars.

Due to the lack of muscle pump activity in the trunkal area, the use of wide-width (15-20cm) medium and long-stretch bandages is preferable over the normally used short-stretch bandages for lymphedema affecting the extremities.

Custom cut or commercially manufactured foam pads or foam chips may be inserted underneath the bandages or compression bra/vest to increase localized pressure in areas of excess fluid pooling, or to soften localized fibrotic tissue. Flat foam pieces can be used to shape and stabilize the compression bandages and to distribute the pressure evenly over a greater surface area.

The patient should be fitted with a specially designed lymphedema bra or compression vest following decongestion of the trunk to assist with maintaining the positive results of CDT. Compression bras and vests have minimal seams and wide straps, are available as off-the-shelf or custom-made garments and ensure that the trunk and breast tissues are properly supported. Compression bras and vests should fit comfortably, provide sufficient support around the trunk and not squeeze breast tissue; pockets to accommodate a prosthesis can be sewn into these garments.

Patients using regular bras or sports bras should make sure to avoid narrow bra straps and obtain bra strap pads or wideners, if necessary, to avoid restriction of lymphatic pathways on the shoulder.

Additional Resources:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

http://www.lymphoedema-uk.com/journal/0101_breasttrunk.pdf

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42 comments to Lymphedema Affecting the Breast and Trunk

  • Edith Aspiri

    Thank you for this information. I also had back surgery, now my ribs set on my hip bones. I have excessive swelling (or fat) in this area.

  • beth

    I have lymphedema in my right arm (lumpectomy surgery 11/09), but it is in the latent stage at this time. Most bothersome is localized swelling on the rib cage between my waist and breast. Painful and skin rash-like. Wearing sports bras helps. Was not doing the manual drainage at this time because arm was not effected, but after reading this article will give it a try. Mentioned it to my oncologist at my last visit, but she didn’t have any suggestions for the trunk issues. Thanks for this information!

  • Carolyn Robinson

    Hi all,
    I am a 54 yrs. old, with complete mastectomy and lat dorsey reconstruction. 5 yrs. after surgery developed edema in upper arm, axilla, breast to midline and trunk under arm extending to the back and up to shoulder blade. I had 30 lymph nodes removed at time of mastectomy. Sypmtoms include elevated temperature in axilla and under arm, burning and pins and needles in breast and chest, tightness on stretching and tenderness. So far the best thing I have used is Manual Lymph Drainage. Ususally takes 6-10 treatments to become sypmtom free and nearly back to normal in size. Due to the areas affected, it is difficult to wrap, but I have a compression bra – looking into a vest because bra doesn’t compress arm and back. Hope this has helped…it took me almost 2 yrs. to find someone to do MLD but glad I kept looking….helps tremendously!

  • Waldemar L.Olszewski

    Swelling of the breast after sentinel node procedure followed by lumpectomy is seen more and more frequently.
    This is an iatrogenic condition causing a sudden stop to the lymphatic drainage of the remaining breast tissues. Lymphatics drain among others microbes from the skin surface and appendices. They proliferate in the stagnant breast lymph. We have documented cases with acute and subsequently chronic breast DLA (dermato-lymphangio-adenitis), requiring longterm bicillin prophylaxis. Bacteriology of lymph revealed presence of Staph. epidermidis and a smear a large number of granulocytes. What seems to be necessary is to immediately administer broad spectrum antibiotic with the first symptoms of inflammation followed by benzathine penicillin for months.

  • As a physical therapist and lymphedema therapist I always look for trunkal lymphedema on the involved side (and often find it) especially when there is upper extremity swelling. The anterior, lateral and posterior chest wall and axilla are prone to collecting fluid after surgical procedures and/or radiation therapy. As a rule of thumb I can say, when the swelling of the arm is slow to recede, applying compression to the upper torso usually helps to quicken the drainage process.

  • Diane

    We’ve found that men’s Under Armor brand short sleeve shirts to be very helpful. Women’s shirts of the same brand have shorter sleeves which create bunching in the axilla.
    We also LOVE Kinesio Tex Tape using the lymphatic fan technique for all areas of the trunk.

  • Elissie

    Thank you for the informative post! I would love to see more information about trunkal lymphedema and/or primary lymphedema in men. My husband has Klippel-Trenaunay syndrome and the lymphatic system on his entire right side is compromised. However, there was no testing to see if the left side was intact and while we saw great progress with CDT in his right trunk he began to have swelling on his left side after two weeks of MLD. Finding knowledgeable doctors and even therapists is difficult to say the least!
    Mr Zuther, thank you very much for your informative posts, it’s encouraging to know that someone cares and is trying to bring awareness about this very misunderstood condition!

  • Carol

    Misinformation regarding truncal lymphedema is very frustrating. I am 3 months post bilateral prophylactic mastectomy with immediate muscle-sparing free tram reconstruction, and I am still waiting for abatement of what my surgeon tells me is merely post-surgical swelling. He is a wonderful surgeon but maintains that truncal lymphedema is an isolated, rare occurance.

    Thinking it wise to seek an independent evaluation from a lymphedema therapist, I called the only LANA-certified therapist within two hours of my home, and we chatted by phone. She informed me that truncal lymphedema exists only as an adjunct to arm lymphedema, and she concluded that because I note no arm swelling or other arm symptoms, I cannot have truncal lymphedema. That was a few days ago, and I have not yet had the heart to make more calls to other therapists.

    I am so encouraged by Mr. Zuther’s post, as I need ammunition to take to my plastic surgeon if my swelling does not improve. But the bigger question is–what does it take to educate surgeons and therapists on whom we patients rely for expertise and counseling when truncal lymphedema symptoms seem to appear?

  • Carol

    Dear Mr. Zuther,

    Many, many thanks for the link to this comprehensive document. I learned a great deal from reading it.

    Carol

  • Joyce

    I too have truncal lymphedema with minimal arm involvement. It has been 2 years since my inital lumpectomy, 11 lymph nodes removed, and 1 year s/p axillary biopsy for a second lump and abnormal PET. There was little information or support until I developed swelling extending from the shoulder to the elbow of the operative side. MLD is a great help. I still have pain and axillary tightening, numbness, and fullness, but I have learned what triggers the worst symptoms and how to manage them. This blog is so informative and reaffirming. Thank you everyone!

  • Shelly

    @Joyce: I’ve been trying to make a connection of what triggers the worsening of my LE symptoms, to no avail. Would you mind sharing what triggers yours? Perhaps I can find a connection. TIA!

  • Anyone know where I can get a kick ass shark attorney that might have much experience going after large insurance co’s on the behalf of lymph patients?

    First I had to diagnose this thing myself, then after I told my DR’s what it is I had, my ins co would not supply me with any provider that knew anything about it.

    They’ve denied or misdirected me for everything I’ve needed for over a year now.

    I knew, was suffering & was trying to get treatment, a lymph specialist MD, a therapist, compression garments, devices & generally ANY advice of what to do about it since the onset when it was definitely manageable & REVERSIBLE!

    A year has gone by & I I’m pretty sure my condition is now chronic & irreversible.

    I have THOUSANDS of phone hours,emails, documentation of misdirects, denials, complaints, grievances, & review decisions from insurance company DRs that clearly know nothing at all about lymph & keep making the final decisions about my health.

    Anyways theres a ton more specific details, but I NEED HELP!

    I’m not sure how I know if there are replies here, & also not sure if I’m allowed to post my contact info, but if anyone has this advice for me.
    I’m very searchable & all over the net just search Caryn Moss

  • Linda

    I’m 4 years post surgery and have managed my upper arm, breast and under arm lymphedema with some occupational therapy and self massage. I occasionally wear compression garments. I just had a reoccurence, but it has also spread from the lumpectomy side to the other breast and upper arm. My OT says she’s never seen this happen. My oncologist says its not new cancer. My GP says there’s no indication of a blood clot. Has anyone heard of it spreading to the unaffected side? Should I worry that it’s something other than lymphedema?

    • Joachim Zuther

      Dear Linda:
      I would certainly trust your oncologists judgement. It is possible that the swelling extends to the opposite side as well. I would suggest trying a course of complete decongestive therapy to see if the swelling recedes.

  • Linda

    Thank you so much. Now that you’ve confirmed the lymphedema can extend to the other side, my mind is at ease. I’ll pursue the therapy you suggest.

  • kim

    I have concern that I have lymphedema in my right breast, armpit,arm and trunk/back area. I feel as if my right arm is being pushed out away from my body as I am in a standing position. I do feel thickness in my armpit and the breast just feels larger. I have not had any breast surgeries. I did have a tumor (lieomyoma) removed from my right posterior should, but I had some of this swelling prior to this surger. Also I had an MRI year or so ago because I was having shoulder pain, it indicated that I had edema in the bone marrow in my shoulder. I am not sure of my problem. Going to see a Dr. soon. Just wondering if anyone has any answers. Thanks

  • Margaret

    I have trunk lymphedema due to three surgeries (2 joint replacements) to my shoulder. My surgeon said it might be lifelong but wasn’t concerned as it didn’t threaten my prosthesis. My GP said I didn’t have lymphedema when I asked to be referred to a lymph specialist. I pushed it with the surgeon and got the referral and the therapy has been quite helpful. Mine is relatively mild and is fairly well controlled with athletic compression garments of the more expensive ($100 a shirt) kind. The Under Armour brand was poorly made and not helpful. I require a medical compression sleeve for the lymphedema in the arm as it is more persistent. Do whatever you can to get the treatment you need!

  • amy

    I have lymphedema due to Klippel Trenaunay Synrome where a car accident about 10 yrs ago triggered it. It involves the left arm, left breast and left shoulder and some of the trunk area really makes my abdomen enlarged at times. when I skip MLD I find that my ankles swell. I have gone through and extensive MLD program with wrapping and saw little results. I wear a custom fitted compression garment and glove. I just purchased a rebound trampoline hoping that this will help? Any suggestions on what I can do? most of the swelling is from the elbow to the breast.
    thanks, amy

  • Embemma

    I developed trunkal lymphedema (stage 0-1) with minimal arm involvement a few weeks after lumpectomy (no lymph nodes involved) and radiation for DCIS. I’ve received treatments at a specialized lymphedema center for breast cancer patients, which includes MLD, self-MLD, compression garments, and a Lymphapress machine at home with a jacket contraption for arm and trunk. I’ve noticed a lot of improvement in comfort and range of motion and significant reduction in swelling. I’ve recently completed treatment and continue now with self-MLD, garments, and the pump. I feel conflicted on how much to continue using the Lymphapress pump at home. Whereas it feels good to pump, it also has caused some neck problems and I have read that using the pump isn’t always recommended. I would value any insight you have to offer. Thanks!

  • Hildamay

    Reading these posts five years after lymphedema came into my life after so called partial mast/ and 18 lymphnodes removed chemo radiation. I actually was not dx for four years i actually found CDL on the internet and educated my doctors. Was I mad you bet four years no tools to manage lots of prescription medication pain and more pain can’t work The first thing I would want women to know is that their surgeron, radiation oncologist, and head oncologist are educated in lymphedema and before any women goes under and any lymphnodes are taken what are the side effects. In my case my tumor was suppose to be under 2.0cm therefore due to my age lymphecomy and sentinel nodes would be tested It turned out that tumor was 2.1cm and it had spread to the first sentinel node but not the second the surgeon decided to take out 16 more i am told cause he thought that cancer would skip trace jump from first node to third however this is not true my choice would have been not to have 16 more taken out my prognosis would have been the same and i know two nodes gone would not have given me this kind of lymphedema arm truncal so yes i would have wanted a choice Cancer’s gone however this thing they call lymphedema caused by treatment of breast cancer is here forever and sometimes it stinks and is very frustating so i have been involved with trying to educate other’s

  • Beloved

    this blog is soooo helpful. i am currently waiting on a compression vest and sleeves for LE in upper arms, axilla, and trunk, n breast. i have seen 3 OT to do the mld. the last i saw was a pt and she said mld would manipulate the fluids around but the compression vest would do the best for me. she said to call her after the vest arrives. but i need mld because i am swelling and my vest has not arrived yet.

  • LynnInColorado

    Sorry you all and isn’t strange to have this “RARE” problem? My history is lumpectomy and 4 Sentinal Nodes (all negative) removed in April 2013 followed by radiation. Truncal lymphedema self-diagnosed from the Internet in August and received referral to PT over the phone from surgeon. Woke with pain and swelling under affected breast in October and Internet/self-diagnosed Tietz Syndrome, benign rib cartilage inflammation. In early November woke with a thin, lumpy line extending from sore rib to abdomen. Internet self-diagonsed as Modron’s Syndrome/benign superficial thrombophlebitis. I called in all of these “rare” developments to my surgeon and only yesterday was asked to come in for a check-up. I use men’s Underarmour V-neck t-shirts with a sleeve and gauntlet as the lymphedema is making it’s way down my arm on the surgical side. The resource provided October 2011 is very helpful as is the StepUp-SpeakOut.org web site. Best of luck to you all!

  • LynnInColorado

    Correction…Mondor’s Disease, not Modron’s.

  • Sharon

    I was diagnosed w/Breast CA in 4/13. I had a bi-lat mastectomy w/DIEP (muscle-sparing) flap transfer. One flap failed the next day, the following day they used a piece of saphenous vein from my leg to replace the “bad” vein from my abdomen..that failed. On day 4, they did a latissmus dorsi muscle w/tissue expander in that breast. I had 2 sentinal nodes removed..no chemo, or radiation. I’ve had tightness & swelling in my abdomen from day 1. It has not gotten much better…gets very bloated at day’s end. I finally went to PT today & they feel myofascial manipulation, massage & taping the area will be very helpful. I had NO swelling in my arm, or breasts…my abdomen has given me the most discomfort. Reading this makes me feel like I am not alone, so thank you.

  • Deb

    I had a right breast mastectomy 2010, chemo and radiation. Developed mild lymphadema in right arm. Wear a sleeve. Had a reconstuctioni in February 2013. March 2014 now have swelling in new breast, back, stomach and the lymphadema in the right arm is getting worse. Feeling is horrible in these areas. I have laser on these areas and lymphatic drainage. Was supposed to have a reduction on my other breast to make them the same size but worried it will worsen so have cancelled surgery. If any one has any suggestions on what I can do next please help. My surgeon appointments have still come up with no diagnosis – I am self diagnosing. If already having lymphadema you really need think about having the flap taken from your stomach and used for your reconstructed breast. Do you think a vest would help and where can I buy one? Appreciate any advice. Thank you.

  • aimee

    I had a ping pong sized axillary node removed last August which was benign.They thought I had lymphoma.6 weeks later I developed slight swelling of breast with development of thickened orange peel like skin that itches at times.I have had two breast surgeons tell me it is breast lymphedema, but I am still wworried that it is cancer.

  • Maria Mitchell

    Hi there! I just found out this morning that I have been diagnosed with lymphedema after having a biopsy done on my right breast. My husband and I were expecting an inflammatory breast cancer diagnosis. Although I am happy I do not have breast cancer, I am very confused as to how I could have gotten lymphedema. I have a slight rash with skin thickening. My right arm has been sore for about a month but I have been recovering from back surgery and thought it was just muscle pain from beginning to use it more. I do not have a rash nor is my arm swollen in comparison to my other arm. I am considerably overweight, but looking at the two arms, I see no difference. I have never had breast cancer, nor have I had any procedure to remove lymph nodes. I am currently awaiting a referral to see my ob/gyn but was wondering if you could shed some light on this. I would really appreciate it! Thank you so much!!!

    • Joachim Zuther

      Lymphedema can not be diagnosed via biopsy on the breast. While it is possible that you have a case of primary upper extremity lymphedema, it seems unlikely, especially in light of the fact that there is no visible difference between the arms.

    • Teresa

      I have lymphedema upper rt arm and hand. Stage 2 since 2009. I am scheduled for tram flap in May and having a hard time finding anyone who’s had the tram post lymphedema diagnosis and their results. I don’t know if I want to go through with this. Any advice or sharing would be greatly appreciated.

  • Shawn Marie Hardy

    I have had truncal edema for several years now. The first time I noticed it was around 2008, but I suspect it was occurring before that–I had the sensation of pressure prior to that. I have not had breast cancer, and have had no surgeries except a partial hysterectomy that was done laproscopically.

    In a nutshell, I wake up with my normal, thin(ish) body and once I’m up moving around I gain about 3’4″ around my midsection (measured at the belly button) by the end of the day. This is extremely uncomfortable, as it is most prominent around my diaphragm and it feels like I’m being squeezed. This has been proven NOT to be ascites, and is contained to the subcutaneous tissue. Think of the old Special K ad about “pinching an inch.” I can pinch an inch when I wake up in the morning, but by the end of the night I can pinch several inches. I have to change my clothes if I’m wearing jeans.

    I get some minor swelling in my upper thighs–mostly on the right, but never in my ankles or lower legs–it only ever measures about 1/2″ more than normal. I think I get a bit in my breasts, and possibly my upper arms, but it is most prominent in my tummy and back. The pain I get from it is like a band of pressure around my diaphragm–it is worse on exertion (even walking, and especially lifting things), and I have not had a day of relief from this since it started. I have kept a photo diary so I can show doctors but they all shrug their shoulders. They have attempted to put me on diuretics but I’ve done enough reading to know that I should stay away from them. I can’t afford to see a lymph specialist but I do my own manual massage on my abdomen–can’t reach my own back though.

    My issue is that no matter where I go, all I find is information about breast cancer patients and truncal edema. The only other thing that seems to come up with truncal edema is superior vena cava syndrome, which I doubt I have, as this has been going on for years.

    I do have other health issues. I have a hypermobility/connective tissue disorder but my inflammation tests are always negative. I have an issue with exercise intolerance (I get short of breath because of the pressure from the edema, which completely inhibits any aerobic activity–my heart also goes out of whack when I’m too active). I have episodes of heart irregularities that occasionally send me to the ER for i.v. Lopressor–this is a weird combo of PACs, tachycardia, and bradycardia, and makes me feel very lightheaded. I have episodes of low blood pressure and then it will sometimes go high. I have frequent episodes of near-syncope. I get swollen salivary glands and episodes of facial swelling and ptosis–all part of my photo diary–but my ANA remains negative (a skin biopsy tested positive for Lupus, but a subsequent one was negative). I have chronic resting leg pain and muscle twitching–RLS maybe? Two years ago I had a lipoma, the size of half a grapefruit, removed from my sacrum but it was not uniform in shape so there is still lipoma that has wrapped around to my hip now. I feel it there all the time. But despite all this I have been poo-pooed by most doctors and nobody wants to listen to me–despite having physical proof that the daily truncal edema is there. I was even yelled at by an ER doctor who humiliated me, and sent me home without hooking up a heart monitor. Another ER determined I needed i.v. Lopressor to get my heartbeat back to a normal rhythm, and I was close to needing a defibrillator. My blood tests are always normal. The only thing that has been determined is that my blood sugar is always high when I go to the ER, and that it has been high off and on lately a few hours after food–just had a glucose test and my doc says I’m now predisposed to Diabetes (my mom was also diagnosed with pre-diabetes recently).

    I am almost 53, 5’7″, and 150 pounds, with a BMI of about 25. I have high cholesterol at 252, which I’m afraid to take drugs for because of the known side effects and my existing leg cramps and pain–and sensitivity to most drugs. I’m working at bringing that down naturally. My bad cholesterol is too high but triglycerides are normal. I have no familial history of heart disease.

    I’m worried about this edema because I can now feel a change in the tissue. It’s thickened, especially right in the middle around my ribs. Something else that happens now is the sensation of getting a charley horse when I bed over – right up there by the diaphragm.

    This can’t be normal and it can’t be healthy. There must be others out there who have this, but who didn’t have breast cancer? Am I wrong?

  • Shawn Marie Hardy

    That should say 3-4″, not 3’4″ around my waste. Is there any way to change that? Sorry about that.

  • Emmi

    I have experienced lymphoedema in my right arm and upper right quadrant of my trunk since a mastectomy in 2004 (34 lymph nodes removed). The swelling was classed as mild, but it caused pain in my arm and in a small area on my back most days. In 2007, I developed cellulitis in the affected area on my back. Following a hysterectomy in 2008, after which I developed very troublesome adhesions, and some injuries – fractured thoracic spine (2012) and severely pulled stomach muscles (2013)- I now appear to have developed more widespread lymphoedema. I have had acute problem for the past four months, with even my face and neck swelling, and have had a lot of subcutaneous pain and swelling to the point of causing joint and abdominal pain. I have also had problems with my upper lung on the side which is affected by lymphoedema – breathlessness and pain at times and recurrent infections. The other lung is fine. Lung tumours have been ruled out by a recent CT. I do notice that when the lymphoedema is troublesome, my lung seems more of a problem and my airway on the right side feels swollen. Do you know of any connection between lymphoedema and lung problems?

  • shawna niles

    I had a lumpectomy and only the sentinel node removed in August 2013. Finished chemo and radiation in March 2014. In May my breast was swelling and hot to the touch so my oncologist put me on steroids and 2 antibiotics. Nothing worked. Then I was told I had radiation recall but no rash or visible change in the skin just swelling and heat. No one know what’s going on it is frustrating. I did have another mammo and MRI that only showed edema in the area.
    Do you think this sounds like lymphodema? Thank you for your time.

  • I am so glad I found your site/blog. Yes, I remember the frustration and despair I went through after my dx and treatment (biopsies, lumpectomy and sentinal lymph node surgery, and radiation) 5 years ago. Instead of feeling better, I was feeling steadily worse. A year after my treatment had ended, spending time outside in the heat made my arm ache painfully and I felt absolutely miserable. After 12 months of increasing misery, I diagnosed myself on the Internet but when I told my doctors and therapists that “I think I have torso lymphedema” I got blank looks. They would quickly glance at my right arm and announce that I didn’t have lymphedema because they saw no swelling there. They either ignored my swollen, hard and tender right breast or said, “Sometimes that’s how it is.” I had to take Hydrocodone before a mammogram to help with the pain. Untreated, my LE continued to worsen and spread. Then, last spring, pain in my rib cage woke me up every night and made me cry. My doctor was not much help. He said I might need an X-ray and suggested that I “wear a sleeve.” My church has a weekly Breast Cancer support group and a woman there told me, “You have lymphedema. Go to the PT department at such and such. Go every day until you get better.” I took her advice and 18 months later, I am better. Intensive therapy, finding the right therapist, ( she saw that not only were BOTH arms slightly swollen, the back of my right thigh was larger than the back of my left thigh and told me to wear compression shorts) wearing torso compression garments and keeping to a strict diet (no salt, no sugar, no cheese) slowly worked. My usual high energy level is finally back. My right breast is once again soft, smaller than the left one as it should be since a lump was removed from it. I have lost 250 ml fluid from my left arm and 220 ml fluid from my right, so called “affected”, arm. I get therapy once each 2 weeks, order “shapewear” from Body Works on-line and avoid heat and airplanes. I still find it puzzling that the medical profession, other than giving me pain pills, offered no help. If a woman in my church can diagnose me, it can’t be that difficult. LE is a frequent complication of cancer treatments but oncologists seem to be unaware of this. Happily, I am better. Perseverance, research and luck did the trick. Recovery is slow but I can see progress and I am hopeful that I will be able to return to my active and athletic life style once again.

  • Brooklyn Boxer

    I don’t know why it makes me feel so much better to read all this after suffering with what I self-diagnosed as breast & truncal lymphedema. It began 3 years AFTER I was treated for breast cancer. I had right side lumpectomy, (1.5 cm tumor), sentinel node biopsy (3 nodes, all negative) chemo, and 33 “blasts” of radiation in 2007/2008. During the fist 2 years of 5 years of Aromasin, I also had to have right-side carpal tunnel surgery, and a year later trigger thumb surgery. I developed infections after those and I’m convinced it’s because my lymphatic system isn’t working on the right side! My surgeon and my oncologist both seemed to think a “little swelling and a little pain” were normal results of my breast cancer treatment, and probably scar tissue from the radiation (I am sure there is some), and that I should be glad I don’t have any signs of cancer. I actually went home and cried when my surgeon told me to take a couple of Advil before my next mammogram. I can’t wear a bra longer than a few hours before I have to take it off. When my internist said I would just have to live with this for the rest of my life I resigned myself to pain, heat, just “slight” swelling, throbbing, ropey lumps in my breast, chest, and back, and most recently up to my neck and down to my waist. This is no minor annoyance. I found a PT certified in treating lymphedema on the Step-up, Speak-out site, but my insurance company would not cover more than a dozen treatments, which did help a great deal. I did not have time to keep up the self-massage for 30 minutes every day, but now I wish I had. I should NOT be made to feel like a hypochondriac when so many breast cancer survivors are suffering from this miserable side effect of breast cancer treatment. Nobody in the medical field seems to believe this is a condition. Why aren’t our surgeons and oncologists informed about breast & truncal lymphedema? It would be so easy, and far less expensive, to work with physical therapists trained to treat it. In a city as big and progressive as New York City, I should be able to find SOMEONE who will help me!

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