A woman in Nova Scotia is now planning her medically assisted death. She has Lymphedema and feels closed in. She has spent $60,000 to go to Japan for surgery, which helped, but it was not a cure. She would like to go for a second surgery.  

The government wouldn’t recognize the need or reimburse her for what she paid out for her first surgery. She couldn’t afford a second surgery without help. No help was forthcoming to cover additional surgeries. She felt painted into a corner. 

I think all of us with Lymphedema or Lipedema worry about what is coming down the pike. Will a flare trigger a massive increase in volume? How to afford MLD? Or compression garments? 

It is a vicious cycle — garments that you need to keep functioning. MLD to help ease the pain and swelling. The hours spent daily looking after the condition. It swirls around and around. 

We need coverage including mobility aids as well as pumps, compression and nighttime garments as well as coverage for MLD.  

Even in the lymphatic community we have haves and have nots. With extended health insurance you can afford garments and massages. Without the additional coverage you struggle. Going to Europe or Japan for surgery is again a luxury many of us can’t afford. 

No one wants to choose death over life. Unless the pain is unending.  

I was listening to a discussion on public transit. The guest stated the government won’t pay attention to a small group.  

We have more members in our Facebook group and on Instagram. More voices for sure, but we need to have more members to get our message listened to.  

Stick around and renew your membership to the BCLA. Encourage people you know dealing with Lymphatic diseases to join.  

If we had 500 members it might influence the government to take our needs seriously. We definitely need help affording garments and treatment for our lymphatic diseases before we see another person deciding to choose MAID. No one should ever be painted into that corner. Having a lymphatic disease is not easy, especially if you develop it after a cancer fight that you think has ended. Then the swelling starts. It is scary and isolating. If you are struggling with depression, please reach out and get help. We have to look after our mental health as well as our physical self.  

Elke’s Journey

I have been dealing with secondary lymphedema in my left arm since July 2021. I’m a survivor of metastatic adenocarcinoma of the lung. My cancer was treated with extensive rounds of radiation to lymph nodes in my upper chest and neck from 2015 to 2018. I have extensive scarring on my left side, neck and armpit.   

I had no sign of lymphedema until I made the mistake of receiving covid vaccines in my left arm. Within two weeks I had lymphedema and cellulitis in that arm. Wish I’d known then what I know now, not to take injections of any kind in that arm.   

Having lymphedema has been a trial. The constant use of compression garments, receiving regular MLD and CDT, and trying to control swelling is a daily burden. The cost of managing my condition has been a burden as well, even with extended health benefits. Paying for professional services and expensive custom-made garments has cost thousands per year. 

In 2022, I was seen by Dr Weiss and Dr Brown in clinic. They determined I was a candidate for surgery due to the extent of swelling, development of adipose tissue and the risks of repeated cellulitis. I had liposuction in the summer of 2023. This has been very helpful. My arm is considerably smaller and I’m able to maintain the reduced size.

Recently, I have been able to access the services of Janet Sprague, a certified lymphedema therapist, who comes to our area once per month.

She comes highly recommended and well known from her practice in Vancouver. She has been very helpful with her expertise in massaging my arm and teaching how to wrap my arm. She advised me on the most effective compression garments for me.  

I would like to see the government set up lymphedema clinics where patients can receive the information they need to deal with their condition. I made critical mistakes due to not being adequately informed. I would also like to see access to treatment for newly diagnosed patients to prevent their condition from getting rapidly worse, as mine did, and to avoid trips to the hospital to treat cellulitis as was my case. As I understand, Alberta has clinics attached to their cancer centres, to help patients with lymphedema. I’d like to see the same medical services offered in BC.

Lyn’s Wish List for BC

What I am passionate about is any possibility of prevention of cancer-related lymphedema.

I would like to see BC be a leader in bringing to Canada what appears to be standard practice in Australia, New Zealand and the US cancer care. Identify cancer patients who are at high risk for developing lymphedema.

High risk patients are those whose lymph system is impacted by their cancer. Whose treatment will likely cause additional trauma on their lymphatic system. These patients should be pre-screened before treatment, especially surgery and radiation. Then followed up with during and after their treatment, monitoring for any signs of swelling.

Being a researcher by nature (I have a PhD in geology) I now spend a lot of time tracking down research literature, and video presentations by researchers, (links to which I am happy to share with anyone who is interested) on lymphedema.

It appears that there is a non-invasive screening technology, called Bioimpedance Spectroscopy (BIS), which simply, quickly, non-invasively, and painlessly can do an assessment of the amount of extracellular fluid in your limbs and trunk, and can compare the affected with the unaffected side.

Extensive patient studies in Australia and the US have indicated that by establishing a baseline with high-risk cancer patients before their treatments, then following up during and after their treatment, BIS screening can often identify the excess fluid development in patients that is the very early stage of lymphedema. Before any swelling can even be measured by a tape measure. The research has shown that for some whose very early stage lymphedema is identified and then treated proactively, have seen their lymphedema reversed.

It doesn’t prevent all lymphedema from developing, but even if it reverses some patients’ lymphedema, it would be good to have access to this relatively low-cost, non-invasive procedure. In my opinion, it should be standard-of-care protocol in all cancer treatment centres in Canada.

I am also passionate about seeing more research into not only preventing cancer, but also more research into surgical techniques for lymph node removal, especially techniques that might lessen the probability of lymphedema developing in high-risk patients. Another surgical option is to have LVA (aka bypass) done at the time of the lymph node removal.

Why did you decide to step up and take on the position of vice president for the BCLA?

For all of the reasons listed above. And especially because if there is any way that BCLA can contribute to preventing even a few high-risk cancer patients from developing lymphedema after their treatment, I would like to see this happen.

What would you like to say for people just beginning their journey with lymphedema?

It sucks, but you are not alone. Don’t hesitate to reach out to the BCLA. And if you would like to see improvements in lymphedema care in BC, we would love to have you join our small but dedicated group of passionate and outspoken members who are advocating for more support for people living with lymphatic disorders in BC.

Editor Note - Primary Lymphedema occurs in one every 100,000 births in the US. It is the result of improper development in the lymphatic system. In Canada and the US, Secondary Lymphedema from surgery or trauma to the body is the more common type of Lymphedema. The BCLA supports those dealing with Primary and Secondary.

Lyn's Journey

Lyn Anglin is currently the Vice President of the BCLA and a breast cancer survivor. 

It took a while to get back to a somewhat “normal” life after the cancer treatments. (If such a thing is possible after cancer.) I am back to doing a lot of things that I like: traveling, working in the garden, walking, going to the gym and hanging out with friends and family. 

I am not happy about having lymphedema, but I’m dealing with it. The bottom line is that I feel fortunate to still be around, and that the Lions Gate Hospital Oncology Ward and the BCCA, and all the doctors, specialist, and health care professionals at both places did an awesome job! 

I was definitely demoralized, and even depressed, when I realized I had developed lymphedema in my left arm. After having gone through all the treatment for cancer – 4 months of chemo, a double mastectomy, and then 16 radiation treatments, a 9-month process in total — to then six months later find out that I had developed an incurable disease that was going to require wearing compression day and night, a daily self-massage regime, and the swelling was at risk of only getting worse, with the added possibility of serious skin infections.  

I realized that I was at high risk for lymphedema after having many lymph nodes removed during my mastectomy. My surgeon had told me that they were expecting to remove 5 to 8, but after the surgery she said they had removed about 18. When I heard how many lymph nodes were removed, my heart sank. When I was discharged from the hospital, I started googling “lymphedema” and “breast cancer-related lymphedema”.   

Finding Out the Next Steps 

I found the BCLA and I reached out to them. Christine Chandler called me back. She gave me information on what to watch for, and how to find garment fitters and manual lymph drainage therapists through the BCLA Directory. I was watching for swelling in my arm. I even went for MLD before anything swelling showed. The initial swelling was really subtle, I had no pain or feeling of heaviness in my arm. When the swelling was noticeable, I had developed lymphedema.  

After it developed, I just didn’t know what I could or should do — should I exercise or not? If exercise was good — how much was good? When is too much, too much? Can I lift weights, do planks, use the rowing machine, or not? I wanted to go back to the gym, to get back to weight training, hiking, and eventually get back to running, but I just didn’t know what was safe. It was scary.  

In hindsight, I wonder if I should have worn compression all the time for at least 6 months to a year after cancer treatments to limit the development of lymphedema. I never felt I got a really clear answer whether it was a good idea or not. I wish we had answers to that question, and access to better early diagnosis, for others at high risk. There is research that suggests that if caught early, at stage 0, some secondary lymphedema may be reversible. 

I would advise new lymphedema patients to do your due diligence. Contact the BCLA to find a lymphatic therapist and a certified garment fitter. Talk to your LANA trained therapist on what you can do to help in your lymphedema fight. Talk to your doctor and ask for a referral for the VGH-UBC lymphedema clinic for an assessment (It is a long waiting list. I have been on it for more than a year). 

What is on my wish list:

I would like to see a lot of things: 

1. More awareness and understanding of lymphedema by medical professionals 

2. More access to diagnosis and treatment for people suffering with lymphatic diseases 

3. More public health care coverage of the cost of compression garments and other treatments (bandaging, pumps) for those who do not have extended health care insurance coverage 

4. More recognition of cancer-related lymphedema, especially since, as the cancer survival rates improve the number of lymphedema patients is probably going to increase (unless protocols change for axillary lymph node dissection or other lymph node-impacting surgeries and radiation). 

5. More research into why some cancer patients at high risk for lymphedema develop it and some don’t after receiving the same treatments 

Next month - Lyn’s feelings on what we need to improve outcomes for secondary lymphedema patients.

During question and Answer period at the legislature on April 23, 2024, Shirley Bond MLA Prince George- Valemount raised lymphedema care in BC to the Honourable Adrian Dix Health Minister. 

Check out the following transcript to stay up to date:

Here is the draft transcript from the Hansard Blues:

S. Bond: I am very grateful to hear that. I had a very powerful meeting with a number of people who just are inspiring with their resilience and their efforts to change this in British Columbia. So I'm very relieved, and I know they will be, to heart that the minister is considering that.

I'd like to also speak on behalf of the Lymphedema Association. I had an unbelievable awareness session. Obviously, when you have lymphedema, compression garments and lymph drainage therapy can be very expensive. Costs run from $200 to $9,000. I think the minister may be aware that I did a two-minute statement on this in the Legislature after meeting with people who were unbelievably inspiring.

I wanted to raise the issue that the Lymphedema Association had submitted an application to PharmaCare in June of 2021, and we're now in June 2024. I'm wondering if the minister could just give me and the members — and the people of British Columbia who have lymphedema — some sense of hope as to whether or not funding will be provided.

Hon. A. Dix: As I understand it, we do cover lymphedema sleeves in B.C. I'll certainly engage with the group, as well as the member, about issues that they'd like to see resolved. Again, the member will know: look forward — and I'll ask, especially, our PharmaCare team, led by Mitch Moneo, to reach out and not to wait for their request on this issue. We will definitely follow up, and I'll follow up with the hon. member.

S. Bond: Yes, and I think that there are a number of specific questions. I think if there would be a willingness, on the minister's part, to have staff reach out to talk about what the gaps are, because they have to be custom-made for people.

I know that in Prince George, for example, one of the things…. Spirit of the North, and Spirit Day, the lymphedema group there in Prince George, actually has raised thousands of dollars to provide assistance to people for compression garments. That is something that we should actually be looking at provincially, to make sure that as many people as possible get the support that they need.

As a result, we are looking forward to a meeting with the Minister of Health soon!

Colleen O'Farrell

As we delve into the heart of 2024, the world of lymphedema advocacy is buzzing with excitement as the Lymphedema Education Day, organized by the British Columbia Lymphedema Association (BCLA), takes center stage. This event serves as a beacon of knowledge, uniting patients, healthcare professionals, and advocates to share experiences, educate, and inspire. Today, we'll explore the highlights of Lymphedema Education Day 2024, with a special focus on the compelling patient stories that stole the spotlight.

Understanding Lymphedema:

Lymphedema is a chronic condition characterized by the accumulation of lymphatic fluid, leading to swelling in various parts of the body. This condition often results from damage to the lymphatic system, commonly occurring after cancer treatments involving surgery or radiation, though it can be present at birth.  Despite its prevalence, lymphedema remains underdiagnosed and misunderstood.

The BCLA's Commitment to Education:

Lymphedema Education Day is a testament to BCLA's unwavering commitment to raising awareness and providing a platform for education. The day began with expert-led seminars, covering topics ranging from the latest advancements in treatment to self-management strategies. However, the true heart of the event lies in the stories shared by those who have faced the challenges of lymphedema and lipedema head-on.

Patient Stories That Touched Hearts:

1.     Janine’s Journey: Janine, a lymphedema warrior, bravely shared her emotional journey of coming to terms with her diagnosis. From the initial shock to the empowering realization that she could still lead a fulfilling life, Janine's story resonated with many attendees. Her positivity and resilience inspired others to embrace their own journeys with newfound strength. Click here to hear Janine's Story.

2.     Colleen’s Journey: Colleen, a lipedema patient, recounted her path from late diagnosis to overseas surgery.  Her tale of emotional fat shaming and misdiagnosis demonstrated the importance of a strong support system, perseverance, and the need for continued awareness in the medical community. Click Here to hear Colleen's story.

The Ripple Effect:

The impact of Lymphedema Education Day 2024 extends far beyond the conference walls. Patient stories like Janine’s and Colleen's serve as a catalyst for change, inspiring others to share their experiences and fostering a sense of community among those affected by lymphatic diseases.

Colleen O’Farrell Q&A on her Lipedema journey. Colleen is a Director for the BCLA in charge of memberships. How long have you been dealing with Lipedema? I was diagnosed 3 years ago at the age of 47, but have been dealing with the symptoms and consequences of the disease since puberty.  Lipedema is resistant to diet and exercise.  I watched helplessly as my body got bigger and bigger. It didn’t matter what I ate, nor how many diet and exercise programs I tried. Starvation, bootcamps, you name it, I tried it.  I have spent thousands and thousands of dollars trying to "fix" myself only to discover at 47 that it was all futile. Don’t get me wrong, living an active and healthy life style is vitally important especially when you have a lymphatic disease; but, the emotional toll of this disease is something that isn’t always discussed. The dysmorphia, the anxiety, being told continually by countless doctors that you need to move more and eat less, the constant stress of watching every bite you put in your body and counting every calorie only to find out that all of the effort was in vain because you really had no control over the situation.   How long did it take to get a diagnosis? I discovered that I had lipedema quite by accident. I knew my legs were getting heavier and more painful at the onset of perimenopause. I had heard of something called Manual Lymphatic Drainage (MLD) that I was told might help. So, I gave it a go like so many other modalities I have tried over the years. I had an amazing therapist, who didn’t think that I had lymphedema, but that I had something called lipedema.  She asked me to speak with my doctor. My GP was very open, interested and willing to do research about my condition. She agreed that I did have it. She didn’t know where to send me for a specialist diagnosis which was required to seek treatment.  After about a year of getting nowhere in Canada, I reached out to a Lipedema clinic in Germany and received my first of 3 diagnoses via a zoom meeting during COVID.  After which I ended up at a weight loss and lifestyle clinic in BC where I was initially offered bariatric surgery. After much discussion and lots of tests, it was determined that on paper I appeared as an athlete; however, my body did not physically represent that. I was determined to be grotesquely obese according to my BMI. Anyone that tells you that hearing those words isn’t emotionally scarring is lying. Finally, I was then sent to a specialist for my Canadian diagnosis which is needed to fill in medical forms for any medical coverage. His letter was completely useless to me, as he clearly stated he did not support surgery and I should just wear tight pants! By then I already had my German and US diagnoses and had traveled to Germany to undergo my first of 4 recommended surgeries to treat my condition.  I know I will not win this battle to have my treatments covered in Canada, but I hope to help change things for those dealing with this disease in the future.  What problems have you encountered with getting referrals for a doctor that understands Lipedema? There just isn’t  anyone willing to diagnose, treat and support those trying to fight the progression of Lipedema.   What made you decide to leave the province to obtain help for your Lipedema? Once I understood that I had a treatable condition and that it wasn’t all in my head, I joined every online forum, support group, facebook group etc. that I could find to educate myself and figure out what to do. I wasn’t willing to wait anymore. I had been dealing with this for over 30 years. Our current medical system is broken and I wasn’t willing to give up my future health and mobility to wait and see if it would be fixed.   How many procedures have you had to improve your quality of life? So far, I have had two high volume lymph sparing liposuction procedures performed in Germany. I have had a total of over 13 litres of diseased tissue removed from my thighs so far. I have 2 more procedures to go on my calves and my arms.  How did you decide on the doctor that you chose? It was a combination of research on forums, online, chatting with those I found that also have this disease and factoring in the overall costs of the treatment and travel.  How long did the procedures take? Each surgery was performed within 2 hours. I was under anesthesia and spent 2 nights in hospital for the first and just 1 night in hospital for the second as my system handled the treatment much better the second time.   What was the follow up care required? I was required to stay in Germany for over 10 days. I received MLD every other day while there. I had to inject myself with blood thinners daily to prevent blood clots and walk immediately after surgery and hourly which both were required to help with blood flow and the drainage of the excess fluid they use during the surgery. It was also required that I drink 6+ litres of water every day (the amount of tissue they removed) to maintain my blood pressure and prevent fainting, wearing compression was also required. They even put me into my flat knit compression before I woke up from surgery. They were required 24/7 for 6 weeks post op.  How long has it been since your last procedure was done? I had my first surgery in October of 2022 and my second in May, 2023.   How often do you have to see your doctor for follow-up? I haven’t seen my German doctor at all, but have followed up with my GP here in BC once a month.  What changed after your surgery as far as wearing your compression? I still wear my compression daily as I actually feel better in them. I am still swollen and they say the full results of the treatment will take up to a year to see.  I am just now starting to see the full results of my first surgery on the fronts of my thighs. And the backs of my thighs are still very swollen from the second treatment. It doesn’t hurt quite as much to put them on anymore!  What has changed as far as your activity level? Surgery has changed my walking gait. My hips and knees are still adjusting to the change, but I can tell it is for the better. The pain has decreased. I can walk and bike further and faster, lift more at the gym, swim further and get into deeper stretches and yoga poses as my body isn’t binding from the sheer bulk of my thighs.   Would you recommend others follow in your path? I think everyone needs to follow their own path. Do your own research and educate yourself on your options. If there had been an easier and cheaper option, I would have taken it. But this has been my journey and I don’t regret it. Would I like the government to cover this so I am not out of pocket for medical treatment that rightfully should be covered, you bet. But this is my life, my health and my future mobility that are/were at risk and those are priceless to me.   What message would you like to give to others dealing with Lipedema?  Keep fighting. It is a journey. A long complicated and tough journey that has many twists and turns, but know you aren’t alone in the fight. You will have to do a lot of research, ask a lot of questions, talk to many doctors who will likely tell you it is in your head or they don’t know what to do for you. Just keep asking the questions. Don’t give up. You are worth it. Your future health and emotional wellbeing are worth the struggles now.  Costs that Colleen has paid out of pocket -Each surgery/hospital stay was $8500 -MLD $600 (5 treatments) -Travel costs for myself and a traveling companion (required) $6000 (lay flat seat on trip home — really needed!)  -Accommodations for 2 weeks: $2500 -Additional expenses (food, etc.) $1000 -Total per surgery: $18600