Manitoba is where my lymphedema journey began. A diagnosis of cervical cancer in early 2006 was followed by a radical hysterectomy and five weeks of daily radiation, all within six months of my first meeting with an oncologist. Life changed. Quickly. 

Yet in all the flurry of appointments, assessments, pamphlets and the inevitable Dr Google visits, I don’t remember seeing or hearing anything about lymphedema. So when my left ankle seemed swollen in the summer of 2009, I chalked it up to hot weather and the joys of being a red-head with limited tolerance for anything above room temperature. Long story short, a few months later my RMT suggested it might be lymphedema and referred me to another RMT who specialized in MLD and CDT. Once again, life changed. Quickly. 

I learned the hard (and expensive) way that a good compression garment fitter is a very different thing than a place that sells compression garments. I learned that the medical system knew very little about lymphedema and that a good therapist is worth their weight in gold. I learned, ironically, that resources were slim for a fat leg and that I was extremely lucky to have a job with medical benefits that covered compression garments and massage. I learned that managing this condition was a non-negotiable daily commitment of time and energy. And I learned the hard way that cellulitis is a mean and unforgiving beast when it comes waltzing into a lymphedema limb. 

Fast forward to the summer of 2022. My husband and I relocated to Vancouver Island from Winnipeg. A new chapter for us both. We’d left friends and family behind. And I’d left my lymphedema support network – an excellent therapist and a fabulous garment fitter. I knew those were holes that were going to be hard to fill. My research to find a new network began with the BCLA website, where I was very excited to see that there was a clinic at UBC/VGH that provided assessment and possibly even surgery. I was determined to make a connection with the clinic and find out more. 

On a grey morning in late October 2025, my husband and I took the ferry to Vancouver with nervous anticipation of my SAPL surgery scheduled for the following day. It had been almost a year since I had met with the surgeon who would do the procedure. I’d worked closely with my wonderful therapist, Carol Armstrong, to prepare as much as possible, bandaging overnight with a regular Class 3 thigh high compression garment, and Class 2 toe cap.  We planned to approach post-surgery using Dr Brorson’s protocols so I had, waiting at home, a new Class 3 compression garment informed by the measurements of my non-lymphedema leg along with enough new short-stretch bandages to ensure I wasn’t washing them daily. 

Recovery from surgery was not swift. They removed 3 litres from my leg, 2.6 of which was adipose. My leg had been bandaged in a way that any MLD therapist would roll their eyes – basic tensor bandages that provided minimal compression. The sensation on much of my leg that would continue for a number of weeks was akin to the feeling one has when local freezing / anesthetic has partially dissipated – thick and slightly numb. There was no question my nervous system was re-calibrating as random sharp pains surfaced throughout my leg, again for a number of weeks. The most disconcerting post-surgery symptom was the copious amount of fluid seeping from one of the canula incisions at my hip area. It was two weeks before the seepage abated. 

I began bandaging over the post-surgery bandages about 36 hours after surgery and maintained 24-hour bandaging until my first therapy appointment about 10 days post-surgery. I never thought I would be happy to hear someone say, “It’s wonderful – I can see wrinkles in your skin!” At the conclusion of that session, I donned my “new” stocking for the first time. And it fit! At that point my leg measurements were down significantly from pre-surgery – as much as 5.7 cm at mid-thigh (11% decrease) and 3.9 cm at the top of my Achilles (12% decrease). From this point on I have worn two compression garments on my leg – one flat knit Class 3 and one circular knit Class 3 – as well as a Class 2 toe cap and, if my leg garment isn’t a full panty garment, I wear a Class 2 flat knit bike short. I saw my therapist weekly for four weeks at that point and have continued with monthly visits since then. I bandage at night over top of an old Tribute night garment which provides texture to work on any remaining fibrosis. My last measurements show continued decrease: that mid-thigh is down 8 cm now (15%), the Achilles is down 4.6 cm (14%) and my ankle is down 4 cm (15%). 

I started back to yoga classes a month after surgery and now maintain a weekly routine of 3 yoga and 2 fitness classes, semi-regular pool visits, and daily walks with the dog. What can I do now that I couldn’t before surgery? My range of movement has increased, and I think my gait is evener. I am looking to find a physiotherapist to assess this and to ensure I am building strength and muscle in this new and improved leg.

Written by: Sharon Jones Ryan

SAPL (Suction-Assisted Protein Lipectomy) is a surgical treatment that may be considered for some people with lymphedema. Before deciding on surgery, it is important to understand what the procedure can—and cannot—do and what ongoing lymphedema management will be needed.

Am I a Good Candidate?

☐ Why do you recommend SAPL for my lymphedema?

☐ Is my swelling mainly fluid, fatty/fibrotic tissue, or both?

☐ Are there other treatments or surgeries I should consider?

What Results Can I Expect?

☐ How much reduction in the size of my limb can I realistically expect?

☐ Will SAPL improve my lymphatic drainage, or mainly reduce the excess tissue?

☐ How long should the results last?

☐ Could my lymphedema return or worsen?

What Are the Risks?

☐ What are the most common complications?

☐ What is the risk of infection or cellulitis?

☐ Is there a risk of nerve, skin, blood vessel or lymphatic vessel damage?

☐ How often do your patients experience complications?

What Will Recovery Be Like?

☐ How long will I be in the hospital?

☐ How much pain, bruising and swelling should I expect?

☐ When can I return to work and normal daily activities?

☐ When can I exercise, swim, drive and travel?

☐ How long does full recovery usually take?

What Happens With My Compression?

☐ What compression will I need immediately after surgery?

☐ When will I be fitted for new compression garments?

☐ Will I need to wear compression every day?

☐ Will compression be lifelong?

☐ What could happen if I stop wearing compression?

What Care Will I Need After Surgery?

☐ Will I need a Certified Lymphedema Therapist (CLT) before and after surgery?

☐ Will I still need Manual Lymph Drainage (MLD)?

☐ Who will manage my compression and lymphedema care after surgery?

☐ How often will I need follow-up appointments?

Ask About Your Surgeon's Experience

☐ How many SAPL procedures for lymphedema have you performed?

☐ What results have your patients had over the long term?

☐ How do you measure whether the surgery has been successful?

Don't Forget to Ask About Costs

Ask which expenses are covered and which you will need to pay yourself, including surgery, hospital costs, travel, lymphedema therapy and replacement compression garments.

One important question to ask:

“What will my lifelong lymphedema management look like after SAPL?”

SAPL can reduce excess tissue and the size of an affected limb, but ongoing lymphedema management may still be required. Make sure you understand the long-term plan before deciding whether surgery is right for you.

LVA (Lymphovenous Anastomosis) is a microsurgical procedure that connects functioning lymphatic vessels to small nearby veins, creating another pathway for lymph fluid to drain.

Before deciding on LVA, consider asking your surgeon these questions.

Is LVA Right for Me?

☐ Am I a good candidate for LVA and why?

☐ Do I have enough functioning lymphatic vessels for the procedure?

☐ What imaging or tests will you use to assess my lymphatic system?

☐ How do the stage and length of time I have had lymphedema affect my expected results?

☐ Are there other surgical or non-surgical treatments I should consider?

What Results Can I Expect?

☐ What improvement can I realistically expect in my swelling?

☐ Could LVA reduce my risk of cellulitis?

☐ Could it reduce my need for compression garments?

☐ How long might it take before I notice improvement?

☐ How will we measure whether the surgery has been successful?

About the Surgery

☐ How many LVA procedures for lymphedema have you performed?

☐ How many lymphatic-to-vein connections do you expect to make?

☐ What type of anesthetic will I need, and will I stay in hospital?

☐ What are the main risks and possible complications?

☐ What happens if the new connections do not work or later close?

Recovery & Lymphedema Care

☐ How long is the usual recovery?

☐ When can I return to work, exercise, swimming, driving and travel?

☐ When should I restart wearing my compression garments?

☐ Will I still need compression long term?

☐ When can I restart Manual Lymph Drainage (MLD)?

☐ Should I work with a Certified Lymphedema Therapist before and after surgery?

Follow-Up

☐ How often will I have follow-up appointments?

☐ Will lymphatic imaging be repeated after surgery?

☐ Who will manage my ongoing lymphedema care?

☐ What symptoms after surgery should prompt me to contact you?

Ask About Costs

Ask what is covered and what you may need to pay for yourself, including surgery, imaging, hospital costs, travel, lymphedema therapy and compression garments.

MOST IMPORTANT QUESTION

“What is the main outcome you expect LVA to improve for me, and how will we know if it has worked?”

LVA may improve lymphatic drainage in appropriately selected patients, but results vary. Some people will continue to need compression and ongoing lymphedema management after surgery.

Introduction: Can you tell us a little about  yourself and your role as a Lymphedema  therapist?

I became a certified lymphedema therapist in 1996 after  receiving a phone call from a breast  cancer support group asking if any of the  physiotherapists at the clinic I owned  treated lymphedema. At that time the  answer was no, and there was very little  information or resources available. My  mother had gone through breast cancer  treatment so I was immediately interested  and began researching how to help  people with lymphedema . 

Inspiration: What inspired you to  specialize in treating lymphedema?

After  receiving that phone call and learning that  there was so little available treatment or  help for people trying to manage lymphedema I immediately was interested  in learning more. I was so fortunate to  have Guenter Klose as my Instructor and he became my mentor which was  invaluable since there were not a lot of  other people with knowledge about how to  manage lymphedema at that time.  Patients were so grateful for any help they  could get it quickly became very rewarding.  

3. What made you join the BCLA? What  value has it brought to your practice in the  last xx years?

The BCLA has become invaluable as a resource to refer people to  and it continues to become even more  valuable as they expand their website and  learning opportunities. It is often the first  valuable resource in the province that  people can access to get started when  trying to learn how to get help in  managing their lymphedema. The  Advocacy Committee has been working  tirelessly lobbying the Ministry of Health to  get access to treatment and in particular  compression garments for anyone diagnosed with lymphedema. I am hopeful  someday this will happen. 

4. Treatment: What types of treatment or  therapies do you usually use to help  patients manage LE?

All four components  of CDT, manual lymph drainage, compression, meticulous skin care, and  remedial exercise. 

5. Memorable Moment: Can you share a memorable experience with a patient that  had a strong impact on you?

There are  many but one that stands out is a woman  who travelled a lot for work and had a demanding job. She had significant  lymphedema in her arm, and despite  every effort had been unable to learn how  to manage it properly. Every time she  became overly exhausted and stressed  with work, she developed cellulitis in her  arm that would lay her up for several  days. This was happening twice a year. 

Once we managed her arm using all  components of CDT her episodes of  cellulitis resolved, her limb size decreased  significantly and she learned how to  manage her lymphedema very well  independently. 

6. Advice: What advice would you give  someone who has just been diagnosed  with lymphedema?

First, please don't  panic, lymphedema can be managed well  but early diagnosis is important.  Fortunately, there are more therapists in  British Columbia becoming Certified in  lymphedema management (in part due to  the generous scholarships being offered  by the BCLA). The BCLA website lists the  certified lymphedema therapists, compression garment fitters and suppliers in the province. If there is no  one in your immediate area to see in  person, I suggest starting with a virtual  appointment with a lymphedema therapist to help you get started. Many clinics in the  province will offer this.

Written by: Janet Sprague

Do you use a pneumatic compression pump to treat your lymphedema?

If so, what you do before you pump may matter, too!

Here’s a tip worth discussing with your lymphedema therapist:

Prepare before you pump

For more than 10 years, I’ve used my Flexitouch compression pump for my leg. Before each session, I’ve made it part of my routine to prepare my lymphatic pathways with a short session of Manual Lymphatic Drainage (MLD).

A compression pump helps move fluid from a swollen limb. Your therapist may also teach you a gentle MLD routine to help prepare the central drainage pathways before using your pump.

Here’s the routine I use for my leg:

1. Deep abdominal breathing
Take 5 slow, comfortable breaths.

2. Prepare the central areas
Using very light pressure, gently stretch the skin around the collarbones, armpits, and/or groin, as instructed by your therapist.

3. Prepare the pathways
For leg lymphedema, this may include the abdomen, hip, and trunk. For arm lymphedema, it may include the chest and trunk.

4. Use your pump
Follow your prescribed pressure, treatment time, and settings.

5. Compression afterward
Put on your prescribed compression garment if it’s part of your treatment plan.

⚠️Important: MLD techniques and pump settings should be individualized. Always follow the instructions from your certified lymphedema therapist. What works for one person may not be right for another.

Certified Lymphedema Therapists (CLTs) are healthcare professionals, such as physiotherapists, occupational therapists, massage therapists and, in some settings, speech-language pathologists, who have completed specialized education in lymphedema assessment and treatment.

This additional training helps them understand why swelling is occurring, how advanced it may be, and which treatments are most appropriate. This is important because not all swelling is the same, and treatment needs to be tailored to the individual.

Treatment Is More Than Massage

Manual Lymph Drainage (MLD) is a specialized technique using gentle, light movements designed to encourage lymph fluid to move toward areas where it can drain more effectively. It is very different from traditional massage.

MLD can be one part of lymphedema treatment, but MLD alone is usually not enough to control ongoing swelling. When reduction is needed, treatment may include:

• Manual Lymph Drainage when appropriate
• Multilayer compression bandaging or adjustable Velcro compression wraps
• Exercise and movement
• Skin care
• Properly fitted compression garments for ongoing management

Once swelling has been reduced as much as possible, an appropriately selected and fitted compression garment can help maintain the reduction and prevent fluid from building up again.

We Need a Team Approach

In B.C., we would like to see more collaboration between Certified Lymphedema Therapists and compression garment fitters. Ideally, patients should have access to assessment, swelling reduction and expert compression fitting as part of a coordinated treatment plan.

A CLT can assess how the swelling is responding to treatment, while a knowledgeable compression fitter can ensure the garment provides the appropriate compression, fit and comfort. When therapists and fitters communicate and work together, patients receive more coordinated care.

Fortunately, more clinics and retailers in B.C. are beginning to offer this collaborative approach.

What If Your Swelling Isn't Improving?

Not all swelling is caused by excess lymph fluid alone. Over time, lymphedema can lead to changes in the tissues, including fibrosis and increased fatty tissue, which may make the swelling less responsive to MLD and compression.

If your swelling is not improving despite appropriate treatment and consistent compression, talk with your healthcare provider or Certified Lymphedema Therapist. Further assessment may help determine what is contributing to the swelling and whether additional testing or specialist care is appropriate.

In B.C., patients with more complex cases may be referred for specialized assessment, including evaluation through the UBC/VGH lymphedema program, when appropriate.

(LE&RN also has a link that says what to look for when going for a therapist_ https://lymphaticnetwork.org/living-with-lymphedema/find-a-lymphedema-therapist/

A recent post in a lymphedema support group asked whether lymphedema is caused by a "calf muscle pump" that isn't working properly.

The answer is no. While the calf muscles help move blood and lymph back toward the heart, they do not cause lymphedema. Lymphedema develops when the lymphatic system is damaged or doesn't develop properly, reducing its ability to transport lymph fluid. That's why lymphedema can affect not only the legs, but also the arms, head and neck, trunk, and genital area.

Living with a chronic condition that has no cure is difficult. Compression garments are expensive, treatment can be hard to access, and everyone hopes the next social media post will reveal the answer we've all been waiting for.

Unfortunately, social media has become the modern-day "Wild West" for health information. Every week there seems to be a new herb, gadget, massage technique, or exercise claiming to cure lymphedema. If it sounds too good to be true, it probably is.

The good news is that we do know what works. Complete Decongestive Therapy (CDT)—which includes compression therapy, exercise, skin care, self-management, and when appropriate, Manual Lymphatic Drainage (MLD)—remains the internationally recognized standard of care for managing lymphedema. While there is currently no cure, these treatments can significantly reduce symptoms and improve quality of life.

One word of caution about MLD: it has become increasingly popular and is now offered in many settings. However, not everyone providing lymphatic massage has specialized training in treating lymphedema. If you have lymphedema, look for a Certified Lymphedema Therapist (CLT) or a healthcare professional who has completed comprehensive training in Complete Decongestive Therapy (CDT). They have the knowledge and experience to assess and manage this complex condition safely and effectively.

When you're looking for trustworthy information, rely on reputable organizations such as the BC Lymphedema Association, the Canadian Lymphedema Framework, and the Lymphatic Education & Research Network. Jean LaMantia's books on nutrition and lymphedema are also excellent evidence-informed resources.

There may not yet be a cure, but there is hope. With accurate information, appropriate treatment, and support, people living with lymphedema can lead healthy, active, and fulfilling lives.

For people living with lymphedema, healthy skin is an important part of managing the condition. Lymphedema can make the skin more vulnerable to dryness, cracking and infection, including cellulitis. A few simple skincare habits can help protect the skin and keep it comfortable.

Moisturize Every Day — but Check the pH

Keeping skin well moisturized helps prevent dryness and small cracks that can provide an entry point for bacteria. Look for a gentle, fragrance-free, pH-balanced or slightly acidic moisturizer. Products close to the skin's naturally acidic pH can help support its protective barrier.

A good moisturizer doesn't have to be expensive. Look for products that are:

• pH balanced or slightly acidic

• Fragrance-free and hypoallergenic

• Moisturizing without irritating sensitive skin

• Absorbed well before putting on compression garments

After bathing, gently pat your skin dry rather than rubbing and apply moisturizer. Don't forget areas such as between skin folds and around the ankles and feet—but keep between the toes clean and thoroughly dry.

I use CeraVe intensive, Eucerin and Aveeno everyday.  When I was dealing with radiation burns, I used GlaxalBase which was given to me from the radiation nurses at the Cancer Center in Calgary. (Sandi).  

I use Patrick Curelle Hand & Body lotion daily. It is unscented, absorbs quickly and easily, contains no toxic solvents, and is well-tolerated even by sensitive skin. (Janine) 

Protect Your Skin from the Sun

A sunburn is more than uncomfortable when you have lymphedema—it is an injury to the skin that is best avoided. Use sunscreen and take precautions to prevent sunburns.

Consider a broad-spectrum mineral sunscreen with SPF 30 or higher, particularly if your skin is sensitive. Mineral sunscreens use ingredients such as zinc oxide and/or titanium dioxide to provide UV protection. Choose a fragrance-free formulation if possible, and remember that protective clothing and shade are also excellent forms of sun protection.

I like doTerra sun face and body roll on for sunscreen as I was getting a rash when I used regular sunscreens. (Sandi)

Your Daily Skin Check

Take a few moments each day to look at your skin. Watch for cuts, cracks, blisters, insect bites or areas that are becoming unusually red, warm or painful. Good skincare isn't simply cosmetic when you have lymphedema—it is an important part of protecting yourself from infection.

Moisturize. Protect. Keep cool. Check your skin.
Four small habits that can make a meaningful difference in living well with lymphedema.

Keeping Cool in Compression

Wearing compression is an important part of managing lymphedema, but during warmer weather it can sometimes feel hot and uncomfortable. The good news is that compression garment manufacturers are increasingly focusing on fabrics and technologies designed to improve breathability, manage moisture and help keep the skin more comfortable.

Manufacturers including Juzo, JOBST, medi, Sigvaris and others offer compression garments with features aimed at improving comfort in warmer conditions. Depending on the product, these may include breathable or lightweight fabrics, moisture-wicking fibres, improved airflow and materials that help move moisture away from the skin.

Some manufacturers are taking this a step further by introducing cooling technology directly into compression products. Juzo, for example, has recently introduced cooling compression wraps for the foot and calf that combine medical compression with materials designed to improve heat dissipation and provide a cooler feeling against the skin.

Other manufacturers are incorporating advanced moisture-management systems into their lymphedema garments. JOBST, for example, describes an advanced moisture-management system in its Confidence garments to improve wearing comfort.

These developments are encouraging because the best compression garment is one that provides the appropriate compression and that you can comfortably wear consistently. If heat has made wearing your compression difficult, ask your certified lymphedema therapist or compression garment fitter about newer breathable, moisture-managing and cooling options.

Different garments provide different levels of containment and compression, so cooling and comfort are only part of the decision. Proper measurement and fitting remain essential when choosing a compression garment for lymphedema.

BCLA does not endorse any particular manufacturer or product. Brand names are included to illustrate some of the evolving technologies available in compression garments.

My name is Lynn Holloway and I am one of the founders of the BC Lymphedema Association.  On June 25^th, 2003 I had life-saving surgery for a large tumor in my left groin after completing radiation in Jan.  My surgeon told me I would have lymphedema, but I thought I could live with swollen ankles if I could just get rid of “Ted The Tumor”!  I had no clue what I was in for!  The radiation and surgery were considered palliative, but here I am on this side of the grass 23 years later!

As the groin area is one of the main thoroughfares for the lymphatic system and mine was now like cement, my left leg started swelling immediately.  My experience at the BC Cancer Clinic in Vancouver was tremendous, but when it came to giving me information on this chronic condition I would now have to live with, I got a piece of paper with the contact information for all the physiotherapy departments at hospitals in BC.  I started to scour the internet for information, but back then, there wasn’t a whole lot and nothing happening in BC that I was aware of.  I knew I was supposed to get a compression stocking once I healed, but did not know where to go to get that done.

I had been living at my mother’s in Vancouver while undergoing and recuperating from treatment, but when I went back home to Parksville, I connected with the physio department at Nanaimo Regional General Hospital (NRGH).  They had a Lymphapress™ system and I started that on Aug 14/03 and had my last one on Apr 17/04, when they had to cut me off from services.  The whole point of the exercise was to get my leg down in size so that I could then get measured for a compression stocking.  However, it was a colossal waste of time and resources as they didn’t know they should wrap me after my Lymphapress™ session, so my leg just filled up again.  It was almost a whole year before I ever got measured for a stocking!  Then don’t get me started on that fiasco.  Time after time my stocking would come in and it would be wrong somehow – made for the right leg, not the left; the whole inner thigh section missing, and on and on it went for likely another year.

My saving grace was when I met Catherine DiCecca, a RMT in Vancouver who had moved to Nanaimo and was serving both cities so I was able to avail myself of her service and knowledge if I was at home in Parksville or with my Mom in Vancouver.  She taught me so much about my condition.

It was Mar/06 when Catherine organized a dinner for a few of us with leg lymphedema (Rayma Hagan, Deanna Trewin and me) at The Topanga Café in Vancouver.  It was exciting for us to meet other people with this disease and discover how many issues we had in common – no help from the medical community; difficulty getting garments that fit; the expense of self-care, etc.  As we talked about all the problems we’d encountered, we knew that if we were struggling, there were others out there feeling the same way.  We decided to create a non-profit organization and began building BCLA.  Catherine enrolled a few other clients as well as Dr. Weiss and a physiotherapist he worked with. We started out as a non-profit and then began working on getting our charity status.

At our first weekend-long plenary session in 2007, we struggled over creating a vision statement, a mission, and goals that we could believe in.  We talked about ‘big dream’ stuff with no idea how we would ever get there and not knowing if it was even possible given we were just a few people trying to make a difference.  Today, many of those lofty dreams have come true and yet we still have so much more ground to conquer.  It has been the work of a handful of dedicated volunteers each year, building upon the achievements of the ones that went before them that have brought us to where we are now. 

After living with this condition for 23 years, my care has become simple.  As long as I have some form of compression on all day, I am happy with my care.  I was fortunate this year to work on reduction with the CircAid system through Terrie Huppie with Medi Canada (also my favourite stocking manufacturer).  I had incredible results initially by using the foot and knee-high portion, but when I added the knee and thigh high, nothing happened and my lower leg went back to the same size.  I am still learning about what my leg will do in certain circumstances.  I no longer spend money on massage therapy as we discovered by doing two-week intensives that not much changes measurement-wise and is expensive when you’re living on CPP & OAS only. 

My mobility is greatly challenged now as my foot has gone numb.  With no doctor for a number of years, it was difficult to get a referral to a specialist about this and now I’m not so sure anything can be done as the nerves are probably damaged beyond repair.  I have had a number of falls because of my foot.  Since being on Ozempic for a couple of years, I have lost a lot of muscle mass and don’t have the strength to hoist myself up and have had many embarrassing moments with having to have a couple of people try to hoist me back on my feet.  My mental health has also suffered and I medicate for anxiety and depression.  In my younger days, I was a plus-sized model and clothing designer for a time.  Gone are the days when I could wear what I wanted as footwear is only a particular athletic shoe that is wide with lots of support that only looks okay with slacks.  

When I have the opportunity to talk to newly diagnosed people, I mostly listen and empathize with how they’re feeling.  I let them know that in time, it will become their new normal and that this is a condition that will not tolerate being ignored.  You have to find your team of professionals that will support your well-being and try a number of things to see what works for you.

At 71 years of age, I may never see the day when I might be able to be helped in a more meaningful way, but I trust that things will improve.  I thank all the volunteers with BCLA that continue the work that we started to keep building forward momentum.

Written by: Lynn Holloway

Introduction:

My husband and I are retired and living in Chilliwack.   I spend a lot of time outdoors, walking, gardening and activities with friends and family.  I am a volunteer dog walker at our local shelter and previously a volunteer horse handler at a therapeutic riding facility until it closed.  Horseback riding was my passion for many years.

Background and Diagnosis:

In 2015 at age 71 I was diagnosed with breast cancer in my right breast.  Treatment was mastectomy, chemotherapy and radiation.  In 2018 I had reconstruction surgery.  Fast forward to December 2024 when I awoke to find my right arm and hand swollen.  Saw my family doctor, we both suspected lymphedema based on my history and he referred me to a vascular surgeon who confirmed the diagnosis of lymphedema.  A compression sleeve was prescribed with little else recommended.

Daily life and challenges:

I wear my compression sleeve for most of the day, sometimes removing it in the evening if it becomes uncomfortable.  Pulling it on is a challenge, a donning glove helps.  Clothing is also a challenge, finding tops with loose enough sleeves to accommodate swelling. 

Treatment and Management:

My daily routine dealing with this condition consists of manual lymphatic drainage massage which I do every morning.  I also do dry brushing before and after.  I have had one lymphatic massage done by a RMT who specializes in lymphedema, unfortunately it is rather costly.  I use a rebounder (mini trampoline) which helps get the lymphatic fluid moving.  All these things do take time but it is a daily necessity.  Arm mobility is affected as well as range of motion and twisting does cause discomfort, for instance, turning a can opener handle, turning the steering wheel in the car, clipping fingernails on the left hand with the right affected arm.  Pressure and aching are ongoing symptoms.  Compression sleeves, which must be replaced every six months, are costly but a necessity, not covered by MSP and we don’t have extended benefits.

Emotional and Social Impact:

I feel quite self-conscious about my arm and wear long sleeves year round to hide the sleeve and the arm swelling.  It was a complete surprise when I developed lymphedema as all through my cancer treatment and recovery it was never mentioned, just some vague remarks about protecting your arm, not having blood drawn or blood pressure taken on the arm.  Also, being a chronic condition, it’s a part of your life forever.

Coping and Resilience:

I try to keep in mind that I survived cancer, went through treatments and am living a full and active life with no recurrence.  Lymphedema is an after effect of these treatments.  There is hope as more research is being done, new therapies discovered and awareness of the condition is widening.  I do feel fortunate that my swelling has reduced by half since my diagnosis and is no longer in my hand. I attribute this to the therapies I’m doing at home, everything has some impact and combined have helped reduce the swelling for me.  There is hope and symptoms can be reduced for some people.

Advocacy:

I am quite open about my cancer journey and the lymphedema that followed and share it with others.  Amazing new treatments are being researched so there is hope for the future.  Trying to keep a positive outlook is helpful and carrying on with normal daily activities to help feel that your life doesn’t revolve around lymphedema.

BC Lymphedema Resources:

Finding resources and help for managing lymphedema seems to be something we have to take on ourselves.  As much as I appreciate my family doctor and the specialist who diagnosed me with lymphedema, it seems we are very much on our own seeking help.  The BC Lymphedema Association has been a valuable source of information. The newsletters are most informative and helpful in connecting us with up to date information and research.  Some others are included below.

BC Lymphedema Association 

Canadian Lymphedema Framework

Lymphatic Education and Research Network which is a US based website

Cancer Rehab PT, Kelly Sturm.  She produces excellent videos on MLD and other exercises to help reduce swelling and is very knowledgeable.

Written by: Julie Bowman