Author: Bill Puetz

In 2014 I was diagnosed with endometrial cancer after a hysterectomy and then had 16 lymph nodes removed to determine the stage.  Cancer treatment included both chemo and radiation.  My lymphedema symptoms began on the day that I had surgery to remove my port in July of 2015.  That morning my ankle was swollen for no apparent reason and one of the attending physicians cautioned me to “keep an eye on that,” but offered no further information.

As I tried to get back into shape again I noticed a stretching pain in my inner thigh when I tried to walk fast.  I also noticed swelling in my calf but it would go away when I elevated my leg so initially I did not think much about it.  After about a month however, my entire leg continued to swell and I knew this was not normal.  When I mentioned it to my physician, he told me that it will take some time, but that the swelling will go down as the lymph finds new pathways out of my tissues.

Finally, my radiologist diagnosed the lymphedema and referred me to the LE clinic.  I currently have swelling on my left side below my belly button to the ankle, and over my hip.  I am however, fortunate that I don’t have swelling in my foot, which is unusual according to my infectious disease physician.  I wear boots and gym shoes all the time, so perhaps the compression on my foot helps.

My lymphedema steadily progressed and I had many bouts of cellulitis despite being very compliant with self-management so I got to the point that I decided I had to do something different.   My PCP found a surgeon at the University of Washington, about 2 hours’ drive from my home.  The results of a lymphoscintigraphy showed that I still had decent lymph vessels in my lower leg.  The surgeon agreed that a lympho-venous anastomosis (LVA) would be beneficial for me.  The procedure was outpatient.  I have two anastomoses near my ankle and 2 mid-shin. The recovery was pretty easy although I wasn’t able to wear compression for 4 weeks after the surgery so I was not able to be as active as I like to be.   I could only wear bandages with not more than 10 Hg pressure.

I still wear compression: class 3, flat knit thigh highs.  I wear biker shorts over them but have to be careful not to get double compression on my thigh.  I use an Entre pump, which I think helps keep the swelling down in my lower leg.  I’d love to get a Flexitouch so I can clear the swelling in my abdomen and hip but my insurance won’t cover it.  I wear a Jobst Relax at night.

My daily routine consists of doing manual lymph drainage (MLD) in the morning, then putting on my compression.  I’m on my feet all day at work but fortunately I don’t have to sit or stand in one place for any length of time so I am constantly on the move.

When I get home at night, I walk or jog – I’m trying to get back to running and am doing more each day.  When I exercise, I wear running tights over my compression.  I also coach cross country.  I stay active and am trying to eat better too – like substituting nuts for cookies.  I’m not too good at eating well; my son gave up ice cream for Lent and that’s been a big help for me!

I have a pretty good attitude about my LE.  But I get emotional when my leg swells more and is sore.  I always wonder what I did to cause it to get worse?  I’ve had so many bouts of cellulitis and I don’t know the source.  I was hospitalized in November last year.  I’ve had cellulitis 7 times since my diagnosis – 5 times since August 2017.  I’m now on prophylactic antibiotics but even so, the last 2 times I had cellulitis, I was on antibiotics.  It didn’t get septic, so maybe the antibiotics helped with that.

I keep a positive outlook as much as I can.  Exercise helps me a lot.  I’ve not had cellulitis in 6 weeks, so I can be more consistent with my exercise.  The LVA helped the swelling in my calf but my calf still is swollen about 2cm more by the end of the day.  I think with compression that shouldn’t happen, so I’m trying to find the right compression for me. I go back to the surgeon in June for more testing and I’m looking forward to that.

Overall, while dealing with LE is difficult, it’s better than the alternative!  I am grateful that I have such a supportive husband too.  Without him, I wouldn’t be nearly as positive about this disease.

Lisa Garcia
Yakima, Washington

I had a lumpectomy in late August of 2016 with removal of 2 lymph nodes for pathology. My cancer was stage 1 with no lymph node involvement. I knew of the connection between breast cancer and lymphedema only minimally from being a nurse. I asked the surgeon at my post-op visit about precautions and he said I should have very little chance of getting lymphedema. That was all he said. I felt very relieved and believed that he would know about the risk of lymphedema with the type of surgery I had so I probably shouldn’t worry about it. Still at my regular physical with my internist, I tried to stop him taking a blood pressure in that arm as it is his usual practice to check blood pressure in both arms; he brushed off my concerns and did it anyway.

Later after I returned to work one day, I looked at my arms and I thought “is my left arm bigger”? I asked my friend and she said she thought it was. The problem was I had previously had a loss of subcutaneous fat from the lower part of my right arm after a cortisone injection in my wrist so it was very skeletal looking. I felt they may have always been different and I couldn’t be sure. When I looked again over the next couple of days I decided it wasn’t swollen. I really wish I would have had a baseline measurement done pre-surgery.

When I went to my oncologist about 2 months after this I asked about lymphedema and she said the same thing as my surgeon “you shouldn’t be at risk.” After radiation and going back to life in December of 2016, I noticed a small indentation in my left wrist from my watch after exercising. I thought it was odd but it went away within hours. In January, it happened again and the indentation didn’t go away as fast. I became alarmed and stopped wearing my watch on that arm. I also had 2 or three times when I would become aware of a heavy painful feeling in my left arm. Both times my first reaction was to think “am I having a heart attack?” and then immediately realize that I couldn’t be and decide I must have overused my arm and it was just muscle strain. I now realize it was the beginning of my lymphedema.

Then sometime in February I cut my thumb while cooking. Because of the previous swelling episodes, I was very concerned and covered the cut with antibiotic ointment and a Band-Aid but when I went to work I had to repeatedly wash my hands as usual and the band aid came off. At the end of the day my arm was very swollen; the veins were no longer visible; and the bony prominences in the wrist and elbow were less distinct.

I had a 6-month checkup with the surgeon at the beginning of March. I showed him my arm and said I thought I had lymphedema and he said he could see that I did. He made a comment under his breath to the effect of “you of all people shouldn’t have lymphedema.”

I asked him for a referral for treatment and he said they didn’t have a lymphedema (LE) therapist there at the Revlon Breast Center at UCLA. He said the one they refer to was in the South Bay and it would be too far away for me. He said I should do a Google search for a LE therapy in my area but to be sure to get one who was occupational therapy trained and not physical therapy trained because they were better.

I felt very lost. When I started looking for lymphedema therapists online only 2 places came up. One was a private clinic specializing in women’s physical therapy. The other was a hospital farther from my house and in a poorer part of town. I only knew to ask if the physical therapist (PT) was certified and both said they were. I made an appointment with both but neither could take me for 3 weeks. I was in a panic because I thought if I didn’t get treated and the swelling increased, my arm would never return to normal. I knew I needed to start wearing a compression garment but I couldn’t until the PT measured me for it.

I went into the same panic mode that I had with the cancer diagnosis. I did hours of research online trying to learn everything I could about lymphedema and how it was treated and the prognosis. None of it was pretty. The articles all said it was incurable and progressive and showed pictures of horribly swollen limbs with lumpy, leathery skin. They told of chronic cellulitis and lack of usability of the limb. No description of how long it took to advance and if stability could be maintained with proper care. Did people stay at stage 1 or 2 for months, years? No one talked about that. Did the initial amount of swelling give any indication of how fast it would progress or how large the limb would become? Could an arm ever be returned to normal size? Why did some people have swollen hands and not others? I think I would have been relieved if someone had just said there is no way to know and just doing the self- care and praying for the best was all you can do. But I felt there was an answer out there and no one was telling it to me. Even when I started working with a Certified Lymphedema Therapist (CLT), I couldn’t get answers from my therapist. I later realized that the therapist I was seeing at the private PT business didn’t specialize in lymphedema and just took a course to learn the massage techniques.

I learned a great deal from videos of Dr. Rockson. Lymphedema was not caused by a simple physical damage causing blockage of flow. It was an inflammatory response to an assault on the lymphatic system. The lymph vessels become lined with T cells from the inflammation which caused the peristaltic action of vessels to slow or stop and suppressed the body’s ability to create new lymph vessels. The slowing stops the flow of lymph making it begin backing up causing pressure on the walls of the vessels further traumatizing them and increasing the inflammation. The back pressure eventually causes so much damage that the vessels blow out and scar over and don’t pump at all. The back-flow leaves stagnant lymph in the tissues that is caustic to the tissue and the body lays down fat and scar tissue to protect itself. This becomes a honeycomb of space for stagnant lymph where bacteria can live almost completely out of the reach of antibiotics.

I also saw some videos about “new” microsurgeries to try to help reduce the load of stagnant lymph fluid either by giving it a pathway to the venous system with Lymphaticovenous Anastomosis (LVA) or new lymph vessels created by a vascularized lymph node transfer.

Not having any idea what kind of outcome I could expect from massage and compression but not seeing my arm return to normal with 2 months of treatment, I felt that the sooner I could have surgery, the better off I would be. I had LVA on July 25th, about 5 months after my physician confirmed I had lymphedema and 6 months after I had undeniable symptoms. I now have an arm that by any measure looks normal and stays that way without any type of treatment.

I still treat any minor wound with antibiotic ointment making sure it stays on it until the wound is healed; I don’t have blood pressure taken or IVs or blood drawn in my left arm; and that’s it. I don’t need compression when flying or exercising.

I have learned there are some centers trying microsurgery to reroute the cut lymph vessels when the lymph node is removed in surgery and they are having good results. There is also Oxford Lymphedema practice that is offering monitoring of lymph function with a test using indocyanine green (ICG) to visualize the lymph vessels and check how they are functioning every 3 months after surgery. Then they could do LVA even before swelling starts when there is just back flow visible and there is a greater likelihood of complete control. I believe because the benefit of surgery is so much greater the earlier it is done that everyone should be offered it at the first presentation of symptoms of lymphedema. Also, everyone should be fully educated about the risks and start treatment at the first signs and have baseline measurements taken. Maybe even start some basic self-massage immediately after surgery to keep the lymph moving.

Nikki Alvarado
Los Angeles, CA

I am originally from Australia. I moved to the US in 1987 after spending 5 years living and working in London and Jerusalem. I have a Doctor of Health Science degree and over 40 years of experience in physical therapy. Twenty-six of those years have been spent specializing in oncology and lymphedema management. I have studied with Vodder, Klose, and others, and maintain my certification as a CLT-LANA by participating in continuing education as a presenter and a participant.

I’ve held a variety of positions in Physical Therapy Departments, most recently at Community Health Center and now at Eskenazi Health Center in Indianapolis, IN. Earlier this year, I started my bodywork practice and see clients with a variety of health issues related to cancer and lymphedema.

My focus is on individualized body work, primarily with women who have a history of breast cancer and who are currently struggling with movement problems as a side effect of surgery/radiation. I address soft tissue restrictions and radiation fibrosis to restore function and mobility. In addition, I provide manual lymphatic drainage (MLD) to individuals with lymphedema.

I also serve as an in-home demonstrator of Tactile Medical’s pneumatic compression devices (Entre and Flexitouch Plus) and am available to consult and measure for compression garments. I am also available for in-person or telephone coaching for people who need help with their lymphedema management.

I enjoy spending time with family, sewing clothes for our new grand baby, and taking yoga classes.

Barbara Feltman
Indianapolis, IN

I moved to the USA for work reasons with my husband and young sons in 2015. I graduated from Physiotherapy (PT) School in Sydney in 1989. Since then, I have worked primarily as a community PT. In 2013, I underwent training in Lymphedema Therapy in Sydney and fell in love with working with this client group. I have also taken an Advanced Lymphedema Therapy course, a Cancer Rehabilitation Course, and Oncology Massage Training. Prior to leaving for the USA, I was working part-time at Mt Wilga Private Hospital (which provides inpatient intensive Phase 1 treatment for lymphedema – I did plenty of bandaging here!) and part-time as a lymphedema physiotherapist for myself in a nearby neighborhood and as a mobile therapist.

In Austin, I was disappointed that it was so difficult, costly, and slow to get my PT license, so I chose to go to Massage School. I am now working as a mobile massage therapist and loving it! I also started using social media more and found lymphedema support groups on Facebook and Inspire, which I frequent. I am always happy to help people with lymphedema or other issues.

Why do I like working with people with lymphedema? Throughout my career I saw people with swelling in their limbs and did not understand fully the cause or best treatment. After the birth of my first child I remember looking at my legs (which both looked like tree trunks – toes to groin) – the physicians looked at the swelling and walked away. No one knew what the swelling was, so they seemed to ignore it. Thankfully, after several weeks the swelling reduced.

Since taking the CLT training, I now understand that I probably have some degree of primary lymphedema (my grandmother, who was a petite lady, also had cankles) along with lipedema. I feel driven to spread the word about this condition, and to educate patients and the medical world more about what it is and how to manage and improve it. I am also aware that it is a new area of science/medicine, and that ideas are constantly evolving in the search for better treatment options. There is much controversy out there about pumps, diets, lotions, garments – I am happy to share my opinion, based on the science that we have, and my personal and professional experience.

My biggest hope is that one day lymphedema will be cured (or at least managed in a simple and cost-effective way). I think that we all know what the first step is in this process – early diagnosis and early intervention.

In the meantime, I am happy providing more education about lymphedema (for me, clients and families and healthcare professionals) and MLD (Manual Lymphatic Drainage) massage.

Clare Landy, LMT
Austin, Texas

In January, 2015, I was diagnosed with uterine cancer with surgery scheduled in February. The surgeon stated that there was no rush to perform the surgery as my symptoms were new and the ultrasound showed the cancer to be well contained. I wanted the surgery that very day, if possible: I was thinking….get it out!!!!; yet he assured me, oh no, we will schedule it for 6 weeks out, the premier oncologist would be available then, I was to go home, continue going about my life, go on vacation, don’t worry, he said, you could actually wait 6 months if you chose, these cancers are slow growing. Well, for me, not so much! Surgery took place in February; my cancer surprisingly was very aggressive, necessitating the removal of 17 lymph nodes, with external radiation, brachytherapy, and 6 difficult months of chemo to follow.

Within a month following the surgery my legs began to feel fatigued, achy, and heavy – that began a long road of unabashedly complaining on my part about this nagging symptom of achy, fatigued legs to any and all medical people I encountered and once blood clots had been ruled out my complaints were summarily dismissed, with sometimes a follow-up look that implied that they had never heard of such a complaint as mine. I was encouraged to “keep moving” meaning keep walking, exercising, push myself to keep my routines if at all possible. I did so with fierce dedication, assuming this was the path to regain my health.

Four months following surgery, I noticed distinct swelling in my right leg. That symptom was met with the response that we needed to “watch it.” Well, we watched it all right, watched it increase in my leg until there was no denying any longer the cause of my complaints. I was treated at one of the best hospitals in Massachusetts; amazingly, there was no lymphedema specialist on staff! However, the Physician’s Assistant suggested I could go to any local pharmacy and buy a compression stocking off the shelf, but she warned me that a lot of people did not like compression stockings as they were uncomfortable. The Physician’s Assistant also agreed to try to locate a Certified Lymphedema Therapist (CLT) for me (but never did!). At that point I was frantic and aggressively searched online for information about lymphedema that clearly was not going to be forthcoming from my medical team.

Feeling profoundly failed, I completed my final chemo appointment in a compression stocking I ordered online, guessing about the compression level best suited for me and using the sizing guide offered. It is hard to believe but even 2.5 years ago, searching online provided even less help than now, unless you knew what you were looking for and obviously this was all new territory for me. I was frightened and horrified that after following medical advice faithfully through this ordeal that my situation was seriously out of control and no one seemed to care!

Thankfully, I did find a facility on my own that provided excellent CLTs, garment advice, and offered the support that I needed. I occasionally wonder if the course of my lymphedema would be different had it been addressed immediately. Of course I also wonder (angrily sometimes) why the medical community is not held to a higher standard in monitoring for and addressing lymphedema when it is not an uncommon result of cancer treatment.

Was I depressed at times during my experience? You bet! So much so, I recognized I was in trouble and sought help. I was referred to a superb therapist who gently helped me navigate the range of emotions I was experiencing, the change in my physical self, relationship shifts that were occurring, and eventually the transition to finding peace and acceptance of my “new normal.” Without question, there absolutely are days I still struggle with these issues; days that exhaustion coupled with discomfort is overwhelming. I see my therapist infrequently now, but I think of her often with gratitude as I use the skills she taught me to maintain my life balance.

I still hate lymphedema. It has indeed taken much from me and has permanently altered a great deal in my life; yet conversely it has introduced me to a world and wonderful people in that world I otherwise never would have encountered. One of those introductions has been the motivating brave women pioneers of 10ThingsLE. I am so grateful to be a contributor; talk about a grass roots endeavor working toward making a difference!

Joyce McMahon
Boston, Massachusetts

My lymphedema started out slowly, as it does for many others. In April-June 2009, my feet were swollen for 2 1/2 months for no apparent reason. My primary care physician (PCP) diagnosed venous insufficiency which she said was due to my sitting a lot, but nothing was done about the condition and the swelling subsided. Several years later, in May 2015, I noticed that my feet and legs were swollen. I attributed the swelling to taking Trazadone to help me sleep, since swelling is one of the side effects of the drug. I stopped taking Trazadone after a month and the swelling stopped. I never notified my physician about it, although I realize now I should have. There were several other times that my feet were swollen for a few hours or a day, and I just assumed it was because of old injuries.

Then in July 2016, after 3 straight weeks of swollen feet, I realized I needed to see the PCP.  I was having trouble getting my shoes on and sometimes couldn’t fasten the Velcro tabs. She recommended diuretics, but fortunately I refused them because of an allergy to sulfa. (I found out later that diuretics are bad for lymphedema.)  My PCP also referred me to a vein specialist, who saw that my feet AND legs were swollen up to my knees. The vein specialist diagnosed me with lymphedema (LE), which neither I nor anyone I know had ever heard of. She also referred me for a cardiology workup to rule out the possibility that my heart could be a cause of the swelling. The vein specialist measured me for support stockings and referred me to an excellent Certified Lymphedema Therapist (CLT).

The CLT gave me exercises to do every day to move the lymph fluid, as well as exercises for my balance problems, and had me fitted in compression garments. My PCP had said to limit salt, and for 2 months I faithfully recorded my salt intake. Because I rarely went over the recommended limits and, when I did, my salt intake didn’t appear to increase my swelling, I no longer record it

My LE is primary (cause unknown, but possibly genetic), Stage I. Fortunately, I don’t have to use a pump or perform manual lymph drainage (MLD)

I wear Velcro closure compression garments (20-30 mmHg) on both legs from the knees down. My CLT said I must wear them 23/7; luckily I don’t need to switch to nighttime garments at bedtime. After a couple months of wear, I found that the liners (often called undersleeves) that are worn with Velcro closure garments were rubbing my toes so much that the toes were very irritated and almost bleeding. So I switched to open-toe liners. 

I have difficulty putting on compression garments. Even something as simple as pulling apart the Velcro closures is annoyingly difficult now and a constant frustration.

Living with lymphedema is difficult–one of my issues is motivation. For example, I know it’s important to maintain skin care but for the last 8 months I haven’t been as faithful about washing my legs daily, putting lotion on, and then replacing my compression. I’ve been doing it every couple of days instead. The CLT told me to use a lotion with the correct pH, such as Eucerin or Nivea. Fortunately, I’ve never had cellulitis.

To get the best care, I believe we need to educate ourselves about this disease and advocate for ourselves as well. I’ve tried to learn as much as I can about LE, and I’m a frequent poster on Inspire.com to help and encourage others.

Before retirement, I did technical writing, and in the last year I’ve used that training to research a lot about lymphedema. On Inspire I’ve seen that many don’t have all the information they need about LE, so I post lists of resources as well as other information. I’m grateful to Belinda for starting and continuing to manage the 10 Things LE project to educate physicians and others about this disease.

Laurie Nelson
Albuquerque, New Mexico

 

Hi, my name is Dawn Oswald, 49 years old, and I am a 10-year breast cancer survivor and I have lymphedema (LE). I have been suffering for 6 years with lymphedema. I had stage 2 breast cancer. After receiving chemotherapy and radiation, my physician put me on an estrogen-decreasing medicine for 10 years instead of the 5 years recommended. Taking it for 10 years decreases the chances of the cancer recurring even more than with the 5-year protocol. I told my physician that I would continue paying for the medicine as my life is worth more than the ten dollars per month cost. I have been taking this medicine for the last 9.5 years.

I just had my annual mammogram. It saddens me to tell you that my cancer has come back. It is the same cancer I had 10 years ago. The mammogram found the small lump in my same breast. It is stage 1.

Thank God I got my mammogram done and I thank the physicians who read the test and performed a biopsy. Ten years ago I had a lumpectomy as I was only 39 and wanted to keep my breast. Now ten years later, I do not have a choice. I have to have double mastectomy and possibly repeat chemotherapy.

No worries though; do not cry for me. I have beaten cancer once before and I will beat it again. I have my family, friends, and co-workers for support.

For my lymphedema, I use Tactile Medical’s Flexitouch and it helps my arm a lot. I also wear a Tribute Night Garment by Solaris at night. I use a compression sleeve every day.

I found out the hard way that some compression garments contain latex. I was fitted for a new arm sleeve and shortly after wearing it, my arm swelled. I threw the arm sleeve away and that is when I saw the tag on the inside of the sleeve that said the garment contained rubber (i.e., latex). The individual who fitted me for the sleeve did not ask about latex allergy and was not aware of my allergy. My arm was swollen for about 2 weeks and it was painful.

I do have pain every day in my arm, but I do not let it stop me. It’s important to stay vigilant – find out what makes the LE worse and limit or avoid doing those things. Asking for help is difficult but very necessary for me to manage my lymphedema.

I find it helpful to take rest breaks – sometimes for an entire day or more. I find my arm swells badly when I do too much at one time, like cleaning the entire house prior to my daughter’s first baby shower. Sometimes, though, my arm swells for no apparent reason.

I’ve learned to be careful when I shave my underarms or legs. I had a bout of cellulitis apparently from a small cut in my arm pit from shaving. Also, I’m cautious about hang nails, manicures, scratches and mosquito bites. I ended up in the hospital with the cellulitis.

What really makes my arm swell is doing dishes (just joking!). Seriously, I cannot scrub pots and pans – I leave those for the hubby. My husband also cleans and does laundry. I’ve learned not to do too much in one day; I’ve found most things can wait.

I’ve heard that individuals with lymphedema should not get into a hot tub; I have a hot tub and I go in it, I just leave my arm out of the water. My LE has been stable for the last 2 years, except for the swelling due to the latex allergy.

I am a Certified Occupational Therapy Assistant and I know how to keep an eye on my arm. I measure my arm almost every day to check for edema. There are days when I don’t feel good and there are days I think I can do everything. I exercise regularly and don’t think I do too much, but often my husband does. He worries too much. If I overdo it, my arm will let me know – it hurts.

I am currently planning to run the Susan Komen 5K this weekend in San Antonio. I am celebrating 10-years cancer free. That sounds funny: 10-years cancer free, when now I am not. I was not going to celebrate because I have cancer again. My friends reminded me that I was cancer free for 10 years so I should celebrate. So, I am celebrating this milestone. I am sad, angry, and very upset that the cancer came back, but I was cancer free for ten years.

I am blessed and trust that I will continue to be blessed. I have faith, love, and courage. I am not alone. I have God, my husband, family, and friends. I am what my parents made me today: strong, loving, and stubborn and I thank them for that. My husband reminds me every day I am beautiful. He is my rock.

I hope I can help someone with my story. My advice is not to let cancer or lymphedema take you down. Life is too short, and life is full of precious moments. Enjoy every day!

Dawn Oswald, COTA
San Antonio, Texas

I completed the 5k I described in my previous post in 31minutes 37 seconds – not bad for this old girl! The photo shows the Wonder Woman outfit I wore on the run.

My arm is the same. It’s stable. I’m still using the Flexitouch, wearing my compression sleeve, and sleeping with my Solaris sleeve.

However, I did not have the surgery I mentioned; after several tests it has been determined that the cancer has spread. I went from stage 1 to a stage 4 as a result of tests that I advocated for myself.

My physician wanted a PET scan just to make sure the cancer had not spread to my lymph nodes again; however, he said the insurance would not pay for it because the cancer was only stage 1. He ordered a MRI of the chest and lymph nodes. The MRI was clear; it showed no disease activity.

I wanted to ease my mind so I asked my VA MD to order a PET scan and he did. The PET scan showed a few spots of concern, so he then ordered a CT scan of my chest. The CT scan results were sent to my oncologist, who ordered a MRI of the whole body as well as a bone scan.

And this is where we are now: The diagnosis was stage 4 breast cancer; it has spread to both my lungs and bones.
I will be receiving chemotherapy for 6 months and then we will go from there. I started the chemotherapy targeting drug last week and I am doing well. I have a little bit of nausea and a headache, but I can handle those side effects.
I will receive the monthly estrogen-reducing injection on Friday this week, so I hope no more side effects; if there are, I will deal with them one day at a time.

Given all the research and technology, I can live another 10-30 years, although there is no cure at present.
I cannot stress enough how important it is to educate yourselves and advocate for yourself. When the insurance company denied a PET scan, the physician at the VA ordered one – and saved my life! I thank him and the VA team for all the scans they did when my private insurance would not.

My husband calls me his hero; I don’t feel like a hero, but I do want to share my story for others to learn from and to let them know they are not alone. Let others help you and stay positive. I am doing both!

Dawn Oswald

In 2007, I was diagnosed with uterine cancer which required a hysterectomy and dissection of 30 lymph nodes. There was no metastasis, so no further treatment was needed until 2010 when cancer recurred in my groin and iliac regions. I underwent a second (exploratory) surgery, resulting in dissection of an additional 14 lymph nodes, chemotherapy and radiation.

The side effects of cancer treatment, particularly surgical scar tissue and radiation, have affected my life. It’s led to lymphedema and various other related issues which I’ll share here.

In 2015, I began suffering gastrointestinal issues and was ultimately diagnosed with ISBO (intermittent Small Bowel obstructions). It’s treated by a physical therapist (PT) educated in the John Barnes Myofascial Release (MFR) technique and a low residue diet.

In 2016, signs of lymphedema showed up first in my swollen foot and ankle which made weight bearing painful and walking difficult. When the swelling moved up my entire leg and the leg became bright red, I went to the Emergency Department where a physician ruled out a blood clot. I next saw a vascular surgeon who diagnosed venous insufficiency due to lymphedema. The same PT who was treating my ISBO began treating my lymphedema using the MFR technique.

My PT explained the correlation between the lymphedema pain I felt in my leg and abdomen. If there’s a buildup of fluid in the abdomen it can affect ISBO and leg lymphedema pain. The swelling results when lymphatic fluid can’t properly drain. The pathway is clogged, so to speak.

Next came vertigo. An Ear Nose and Throat specialist diagnosed the “edema” in lymphedema as creating enough excess fluid in my body to cause vertigo.

My activities of daily living are greatly affected by cancer treatment side effects (lymphedema and ISBO). However, the support of family, friends and groups such as Inspire help me to be my own advocate. I can find the knowledge I need to treat the issues in my life. This support greatly helps the emotional issues that can arise at times out of pain, anxiety, and the physical challenges.

Since compression is a universally accepted practice in the treatment of lymphedema, my personal goal is working with my Certified Lymphedema Therapist (CLT) to find that perfect everyday use maintenance garment, once our reduction work is complete.

My current regimen consists of wearing a CircAid Juxtafit at home, rather than bandages, for reduction. I also use a Bio-Horizon pump, and see my PT for MFR and CLT for manual lymph drainage (MLD). I elevate my legs as often as possible. I do the exercises prescribed by both my PT and CLT.

Additionally, I recently found the Ketogenic diet to be highly effective in reducing inflammation and assisting in lymphedema pain and swelling.

My biggest disappointment in treating my lymphedema is the extreme lack of knowledge about the disease in the medical community. Even recognizing lymphedema is sometimes a challenge to these professionals.

If one is fortunate enough to find a PT and/or a CLT who knows it “ALL”: garment brands, fitting, MFR, and MLD, you’re ahead of the game.

And by educating ourselves and helping each other, we CAN!

Journey on!

Jeannie Starrett
Porter Ranch, CA

I wasn’t officially diagnosed with secondary lymphedema until March of 2017 but my primary care physician (PCP) had made an offhanded comment about the lymphedema in my legs a few years prior to that. I had never heard the word before and I think I didn’t want to acknowledge it at the time, which I regret, but regrets are wasted time and energy.

I underwent abdominal surgery for perforated intestines in 1996 which resulted in my abdominal lymph nodes being scarred and damaged which in turn overwhelmed my groin nodes. The lymphedema had remained “dormant,” so to speak, for sixteen years but started a slow progression in 2012 until finally diagnosed in 2017. At first I thought it was just normal swelling because of the heat and humidity of our area. That’s when my physician started me on diuretics. For a while they helped pull the fluid from my feet but then I started having the heavy leg sensation, better known as “Heavy Leg Syndrome.” My lower legs started swelling at which time the rheumatologist sent me for physical therapy (PT) where my initial leg wrappings began. After two weeks of daily PT appointments my insurance company would no longer cover the treatment. In addition, the physical therapist kept telling me I did not have lymphedema (LE)

For two years I would wrap when the swelling caused discomfort or wouldn’t go down overnight. After deciding that I needed to advocate for myself, I started browsing the Internet and found the lymphedema support group on the Inspire website (www.inspire.com).

It was there that I read about LE treatment with a CLT (Certified Lymphedema Therapist). I asked my PCP to send a referral for lymphedema therapy and then began a six week (5 days a week) treatment course of reduction wraps and MLD (manual lymphatic drainage) massage which moves the lymphatic fluid to my working chest nodes. It was during my therapy that I learned diuretics are harmful in treating LE and since I wasn’t taking them for any other health issues, I threw them out. At the fifth week of therapy, measurements were taken and custom compression garments were ordered.

I was just starting my therapy when the lack of insurance covering my therapy needs reared its ugly head. Insurance covered 80% of the therapy sessions, the CLT, and the stretch compression bandages which were such a struggle to keep up causing us to rewrap throughout the day and overnight. I decided instead to wear Velcro reduction wraps which my insurance would not cover. Once the custom flat knit compression garments were ordered I had to cover that expense as well and they need to be replaced every six months. Make no mistake, LE is a very expensive and time consuming disease to manage on a daily basis.

My lymphedema is at Stage II of three stages and I’m blessed to have had no bouts of leaking lymphatic fluid, infections, or cellulitis. Daily donning of compression garments takes both my husband and I to put on every morning. I wear 30-40 mm/Hg flat knit compression thigh highs 14-16 hours each day. I am able to sleep without compression and pray that continues long term.

Bilateral LE in both legs has completely altered my daily life. Every day is a struggle to accomplish the simplest of daily tasks not to mention the emotional, humiliating, and embarrassing aspects of the disease. The heavy leg sensation and pain I experience is exhausting and makes mobility very difficult. Despite the challenges of this disease, I manage it to the best of my ability and knowledge. I pray every day for a cure so that I as well as others may someday enjoy life as we once knew it.

*I must say I could not manage this disease without the love and support of my husband whose kindness, devotion, and compassion for me knows no boundaries. Thank you to the love of my life! I am humbled by the many blessings in my life.

Lynn Steiner
Gloucester, Virginia