What I have learned: Patient-to-patient advice
The 2023 CLF National Lymphedema Conference in Toronto featured an inaugural patient-to-patient advice workshop.
By Catharine Bowman, Lori Radke and Heather Watt
Patients were brought together to share wisdom and lived experiences with each other. The objectives for the session were to provide a safe, inclusive space for patients to collaborate, connect and create: 1) suggestions for newly diagnosed patients to make their lymphedema journey smoother and 2) a list of patient recommendations that reflect a goal of patient centered lymphedema management. Ultimately, the goal was to “elevate the voice of patients”. Workshop participation was restricted to patients (one spouse also participated) to create an open, sharing environment. Demographics of the participants can be seen in Table 1. The workshop structure was adapted from the World Caf é (www. theworldcafe. com) and used their guidelines and etiquette. The room was arranged to promote small, welcoming discussions with 4-5 people per table. All input was kept anonymous, and two disclaimers were stated upfront: 1) recommendations that were potentially harmful or contraindicated for other patients would not be included, and 2) before adopting any recommendations from the session, patients were advised to check with their healthcare provider.
The hosts prepared questions that were vetted and validated by patient representatives prior to the conference. Questions were categorized under four themes: Diagnosis, Initial Treatment, Ongoing Management and Next Steps. The workshop participants had 12 minutes to discuss each question and then post their responses on the wall. Some tables collaborated on their input, while others posted individual responses. The proposed outcomes for the workshop were to present the preliminary results at the conference’s final plenary, produce an article for Pathways and create a patient-to-patient brochure. Here are the results:
Diagnosis
Based on your experience, what have you learned about the symptoms that you think a new patient should be aware of?
Contributors discussed the following symptoms.
n Pain n Discomfort n Pressure n Swelling
n Non healing wounds
n Limb heaviness
n Skin changes: hardening or tightness
n Tingling
n Nodular swelling
n Swelling that does not reduce overnight
n “Unexplained” swelling that comes and goes
n Changes in mobility
n Too much or too little movement causing changes in swelling
Catharine Bowman is a PhD Student in the Department of Epidemiology and Population Health at Stanford University and MD Student at the University of Calgary. She has been named one of Forbes Magazine’s 30 under 30.
Lori Radke PT, CLT is a physiotherapist and certified lymphedema therapist who coordinated the Rehabilitation Oncology program at the Tom Baker Cancer Center/Holy Cross from 2009-2021 and continues to work with lymphedema patients, both cancer-related and non-cancer-related, in Calgary.
Heather Watt OT, CLT has been an integral part of the development of an outpatient lymphedema clinic that focuses treatment of primary and secondary lymphedema excluding cancer related lymphedema.
People already have within them the wisdom and creativity to confront even the most difficult of challenges; that the answers we need are available to us; and that we are wiser together than we are alone. (www.theworldcafe.com)
One contributor who had surgery-related lymphedema mentioned the importance of visually comparing limbs/body regions in a mirror or taking limb measurements to track the size of their limbs. This point was supported by the mention of many cancer survivors feeling that they were not made aware of lymphedema before receiving cancer treatment.
What did you learn about navigating the medical system when you first noticed symptoms? What recommendations would you make to someone trying to get a diagnosis?
Persistence was a major theme for the diagnostic journey:
n Be persistent
n Keep asking questions… don’t quit learning
TABLE 1
Participant demographics
TABLE 2
Mindset advice provided by patient contributors to address long-term management
Theme Advice
Resilience and transformation
Just because there is “no cure” doesn’t mean there isn’t something you can do about it
Resilience and transformation It will get easier and you will manage
Transformation Be patient, have an open mind, embrace change and emotions that come with experience
Prioritization
Finance
TABLE 3
Prioritize your treatment needs
Financial output for lymphedema management is an investment in your health needs
Resources suggested by patient contributors
Category Resource
Online
“Lymphie” social media sites
Online, print Websites and books
Online, in person
Associations and organizations
Patient community groups - Be open-minded, but cautious (don’t listen to everything you hear)
Provincial organizations, CLF, LE&RN, search international and use all types of forums
n Know your body
n Self-advocate
n Educate yourself
n There is a lack of lymphedema knowledge when navigating the medical system
n Encourage new patients to educate their doctors
n Seek out multiple opinions regarding the diagnosis
n Minimal access to care
n Lack of funding for therapy and treatments
What components of Complex Decongestive Therapy (CDT) did you find the most beneficial and challenging?
Beneficial Challenging components components
n Exercise
n Self-manual lymphatic drainage
n Pool therapy
n Compression (also described as the most challenging)
n Being able to actually see the results of CDT treatments
n Balancing/ juggling the various components
n Encountering a lack of information and self-care information in the medical community
n Finding a CLTtrained therapist (particularly in rural locations)
n Bandaging
n Need for trial and error to find the optimal treatment sequence
Initial treatment
What tips would you give a new patient just starting the initial treatment for their lymphedema?
This question prompted many unique replies:
n Compliance is key
n Be kind and gentle with oneself
n Mindsets help manage life and treatment (see Table 2).
n Consistent compression: “Compression is your best friend!”
n Seek out additional information and a Certified Lymphedema Therapist (CLT)
One contributor suggested that having 1-2 weeks of intensive CDT offered to patients every few years would be beneficial, similar to the treatment model adopted in Germany.
What
Therapist
n
n
n
n
n
Ongoing management
n
When asked for the “best advice for other patients managing chronic lymphedema,” many patients spoke on mental resilience, recognizing there will be good and bad days, and emphasized the need for more self-care on hard days. Being patient with oneself/the process and realizing that acceptance can be a slow process. Socially, patients highlighted the importance of connecting with others in an uplifting way to help maintain a positive mindset, such as asking for help, finding a support group, advocating, and communicating with others (see Table 3 for recommended resources).
Therapist
n
n
n
n
n
Contributors also offered routine and lifestyle advice for management:
n Nutrition and limiting alcohol intake
n Regular/consistent exercises (including pool)
n Elevation and stretching
n Home modifications, such as removing any tripping hazards to reduce potential for injury
n Search online for single shoes when LE increases size of one foot
Concluding thoughts
The session concluded with a discussion on “the most important advice to share with patients recently diagnosed with lymphedema.” Once again, the themes of consistency, routine, and building self-care teams were emphasized.
Advice included “be your own advocate” and “keep being curious and learning”; connect with others and yourself, listen to oneself, do what feels best for the body and be sure to rest. Finally, patients said it is important to “stay positive, never give up and keep your spirits up.” This included being kind and patient and “breathing to know everything is going to be okay.” Ideas for sharing the information from this session included publishing and sharing with provincial lymphedema associations, circulating to general practitioners, therapists, surgeons etc. and sharing on websites and social media.
Powerful energy filled the room throughout the workshop, but it peaked amidst these final discussions. In the words of one workshop contributor: “The energy and enthusiasm was amazing. I had almost given up hope that things would change; this workshop renewed that hope!”
As we all departed the room, one advice caught our eyes: “Have hope. Don’t give up on your passions. Still live your life.” This statement is a powerful and important reminder to all living with chronic lymphedema. As hosts, we thank all the participants for their generous input and support for this endeavour. It certainly would not have happened without you! LP
