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Lymphedema Self-Care Practices Tips for Soft Supple Skin

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By Siobhan O’Reilly Bracken, MISCP MPA MSc CLT updated 28/09/20

Meticulous skin care is a cornerstone practice in your lymphedema self-care practices (LSCP). By proactively caring for your skin, you’re protecting it so it can protect you. You are also caring for your lymphatic system, because the superficial lymphatic system is situated in your skin!

Who benefits from practicing meticulous skin care?

If you are already living with lymphedema or if you are at risk for developing lymphedema, this article is for you. If you’ve had cancer treatment that involved your lymphatic system, you may be at risk of developing lymphedema. Fortunately, lymph vessels cut during surgery can regenerate; however, lymph nodes do not grow back, so the risk for developing secondary lymphedema is life-long. The risk is low when only the sentinel lymph nodes are sampled and higher (but not imminent) with a total lymph node dissection (TLND).

Life-long self-care practices

Lymphedema self-care practices, such as meticulous skin care, are life-long practices that will bear fruit now and for many years down the road. Clearly, the earlier you become skilled in your own skin care practices, the better for you and your quality of life.

How does your skin protect itself in order to protect you?

The outermost layer of skin is covered by a veil or film known as the “acid mantle.” This protective veil is maintained when sweat and sebum are secreted up onto the skin from sweat and the sebaceous glands just below. These secretions mix together to form a low pH acid mantle. Bacteria prefer an alkaline or higher pH environment. This acid mantle is the body’s own natural way of keeping your skin healthy. Healthy skin feels soft and supple and acts as a protective barrier, preventing bacteria and fungi on your skin from getting through the outermost layers and into the body

First-aid kit for skin breaks

Reduce your risk of skin breaks by using insect repellent, sun screen and wearing protective clothing, such as a high collared shirt, long pants, boots, gardening gloves and oven gloves. Make sure you have a first-aid kit at home, in the glove compartment of your car and in your suitcase when on holidays where insect bites are common. Useful kit items include antiseptic cream, anti-itch cream and over-the-counter pain medications to keep your fever low until you can see your doctor or an ER team.

FIRST AID KIT

Image: Use repellent to prevent insect bites and
anti-histamine or antiseptic creams to treat them.

What is the connection between breast cancer-related lymphedema (BCRL) and cellulitis?

Many people living with lymphedema are familiar with cellulitis. If the skin is broken, either because it is dry and cracked, by an insect bite, or by an cut, streptococcus and staphylococcus bacteria can enter and infect your skin causing cellulitis. The infected area becomes red, painful and swollen, and you may also develop flu-like symptoms. A mild cellulitis can go away on its own, but it can also spread quickly. Call your doctor without delay and explain your symptoms so that you can start oral antibiotics. Advanced cases will need intravenous antibiotics and possibly a hospital admission. Sepsis is a serious complication of poorly treated cellulitis, when the bacterial infection spreads into the bloodstream.

BCRL AND CELLULITIS

Image: Cellulitis with right arm
breast cancer-related lymphedema

Back to the acid mantle

Without this emulsion of fats and sweat, skin becomes dry, feels tight and rougher, and becomes more susceptible to cracking.

THE ACID MANTLE

Image: The acid mantle (see the blue striped layer) becomes weakened when
you use alkaline soaps or skin products with perfumes, parabens or fragrances.

The acid mantle emulsion is made up of three naturally moisturizing factors:

  1. Lactic acid and various amino acids from sweat secreted by the sweat glands.
  2. Free fatty acids from sebum secreted by the sebaceous glands attached to hair follicles.
  3. Amino acids, pyrrolidine carboxylic acid and other natural moisturizing factors.

Combined, these secretions maintain a low and slightly acidic pH on the skin, between 4.5 and 5.5. Therefore, it is the sweat and sebaceous glands that we are thinking about as we select our skin care program. If we select products and practices that are compatible with the body’s own highly evolved mechanisms, we can boost our skin’s ability to defend itself from fungal and bacterial infections, including cellulitis.

Practical suggestions

  1. If you have lymphedema and a specific skin condition, such as psoriasis or eczema, please discuss it with your doctor and dermatologist, who may prescribe specific treatments.
  2. Check the labels on the back of the skin care products you use. Read the percentages of perfumes, parabens and fragrances to get an idea of its pH. Consider the potential affect it will have on the skin glands and acid mantle.
  3. Try products that state they have a low pH, e.g.:
    • Eucerin pH5 Body Wash
    • Eucerin Urea-Repair with 5% Urea, Replenishing Body Wash

LOW pH SKIN CARE PRODUCTS

Follow these principles of meticulous skin care, and your skin will serve you well!

Report from June 2019 Course

Report from “The Strong Pink Women Program”, breast cancer rehabilitation for Physiotherapists course on June 13th and 14th 2019.

Physiotherapy teacher: Siobhan O’ Reilly Bracken

Exercise classes teacher: Hayley Killen

This course was held in UCD School of Physiotherapy rooms, over 2 days with 11 participants, one administrative assistant, one time-keeper/teaching assistant. Coffee breaks and light lunches were provided

We started day 1 with lectures on: (1) Breast cancer treatment, (2) Surgery and reconstructions and (3) The healing lymphatic system and cording. After lunch we focused on learning manual therapy techniques for scar tissue release, cording and fibrosis. Hayley Killen brought us through a thoughtful and balanced breast cancer exercise class.

We started day 2 with lectures on; (4) Radiation, the side-effects and implications for manual therapy, (5) Chemotherapy side effects and implications for exercise. (6) A walking program to meet Physical Activity guidelines. (7) Early lymphedema and early compression therapy. (8) Essential self-care skills. In the afternoon we focused on learning the manual therapy techniques for scars, cords and fibrosis. Hayley then brought us through a Yoga class designed for breast cancer rehabilitation. We closed out the course with an inspiring guest speaker who is herself a Physiotherapist and breast cancer survivor and she described her experience with DIEP breast reconstruction and how she progressed her exercises to return to running. Certificates of completion were awarded and course evaluations completed.  Read more.

June 13th and 14th 2019 course evaluation comments;

‘Wonderful presentations, all referenced and the pre-reading was so useful’. OG

‘Good practical skills, smaller numbers excellent’. MB

‘Time management good!’ MB

‘I feel a lot more confident in assessing and treating patients, but also in being able to answer questions they may have and offer advice’. Anonymous

‘Fantastic course and loved all the hands-on practical work’. Anonymous

‘I feel the work you put into this course is fantastic, I would love to follow up with another course with you’. AOD

‘Thanks so much Siobhan. Your mannerisms and humour made this course so much more enjoyable’. Anonymous

Siobhan, thank you so much for a wonder physio-promoting, evidence based enjoyable course! You are such an engaging, facilitative educator. Hope your dreams for world-class breast care in Ireland is realised! With our help! AC

Prospective Surveillance Model of Care

The CSSM Model in Ireland Oct 17th 2017

Implementing Standards of Care in Cancer Rehabilitation In Ireland’s Health Services

Proposal for Cancer Survivorship Surveillance Model (CSSM).

Original Article by:

Jill Binkley, PT, MSc(PT), CLT, FAAOMPT.

Siobhan O’Reilly Bracken, MISCP, MPA, CLT. MSc(Sports)

Tuesday, October 17, 2017

Background

Treatment for cancer typically includes surgery, chemotherapy, radiation therapy and endocrine therapies, which introduce a variety of physiological effects known to adversely impact body structure and function.1-8  Treatment side effects have been most well documented in breast cancer patients, where effects may lead to physical impairments including lymphedema, pain, fatigue, weakness, restricted range of motion, joint arthralgia, neuropathy, and osteoporosis. Treatment is also known to adversely affect physical function, body weight, and cardiovascular health. These impairments may adversely affect patients’ participation in activities of daily living and employment, and negatively affect healthy lifestyle behaviors such as regular exercise.9 While there may be a clinical impression that these issues are uncommon, emerging evidence indicates that a majority of patients experience at least one or more of these physical impairments and suffer from the aggregate burden of impairments, co-morbidities and disease treatment.4,7-9

Lymphedema is a common, much-feared and deeply impactful side effect of cancer treatment.3,7,8,10,11 The risk factors for lymphedema in cancer patients include lymph node removal, radiation, primary involvement of the lymph system. Risk can be decreased through exercise and weight management. In the case of breast cancer, virtually all survivors are at risk for lymphedema and approximately 30% of patients will experience this much-feared side effect in their lifetime. The condition is progressive, chronic and costly to manage when it becomes moderate to severe. Research has demonstrated that patient education regarding risk reduction and provision of early detection and treatment is successful in preventing the impact and progression of lymphedema through less costly intervention.12-15

The Prospective Surveillance Model of Breast Cancer Rehabilitation

The Prospective Surveillance Model of Breast Cancer Rehabilitation (PSM) was developed by the American Cancer Society in collaboration with a team of experts in the field of cancer survivorship.14 The model aims to identify physical side effects early in order to reduce impact on patients and reduce costs in the healthcare system. In the model, baseline assessment that includes arm volume, shoulder range of motion, pain and strength are taken prior to surgery, which is typically the initial phase of breast cancer treatment. Measures are repeated at follow-up visits post-operatively in an effort to identify early signs of physical impairment. If impairments are detected, rehabilitation may be initiated. This proactive approach promotes early intervention to optimize recovery and return to pre-morbid levels of function.9,16-1

Lymphedema risk is reduced through the model through educating patients regarding risk factors, providing early detection as well as treatment of related impairments such as cording and limitation of motion that increase lymphedema risk. Education and reinforcement of health promoting behaviors such as exercise, weight control and physical activity is continued is woven throughout the model of care.

Perspectives of Cancer Patients  

In Ireland and internationally, cancer patients’ unmet needs for education and support for cancer treatment side effects are widely documented. In general, cancer patients are seeking access to care that promotes understanding, prevention and treatment of cancer side effects through evidence-based education, lifestyle change, exercise and, when needed, rehabilitation for cancer treatment side effects.19,20 A prospective surveillance model of survivorship care meets patients’ needs.

The PSM as a Model of Survivorship Care in Other Cancers

The PSM serves as a template for a more general Cancer Survivorship Surveillance Model (CSSM) proposed here that will address survivorship issues commonly seen in other cancers. The focus of this proposal is on cancers where chronic side effects of treatment, such as lymphedema result in the need for ongoing care and cost to the health care system. As such, the focus initially is on breast cancer, head and neck cancers, skin cancer with either axillary or inguinal lymph node dissection and radiotherapy and abdominal and gynecological cancers, where lymphedema is a common side effect of treatment.

Implementation of a Cancer Survivorship Surveillance Model (CSSM) for Lymphedema Risk Reduction and Early Management in Ireland

The CSSM could be implemented for all cancer patients, or at different levels of intensity based on risk for chronic impairments such as lymphedema. It includes a pre-operative assessment by a physiotherapist or occupational therapist, including relevant range of motion, strength, limb volume assessment, education and exercise instruction, as applicable. This would be carried out in one of the Cancer Centers. These records and post-operative discharge notes will be sent to the patients’ family practitioners and community based physiotherapist for continuity of care and as a reference point for ongoing care and surveillance frequency, based on risk factors and co-morbidity. Post-operative follow-up assessments and management of survivorship issues, including lymphedema, would be carried out by community-based physiotherapists and occupational therapists trained in the model.

Calculating FTE/WTE

Three tracks of care have been identified to broadly demonstrate trajectories of care within the CSSM. Research suggests that implementation of a prospective model that facilitates early detection of issues, including lymphedema and that includes education and exercise may reduce patients in need of Track 3 care, which is more burdensome to the patient and significantly more expensive to provide.

Figure: Cancer Survivorship Surveillance Model

Current and Future Health Care Provider Capacity

Most aspects of the proposed CSSM relies on community physiotherapists already in place, with basic undergraduate education in oncology, including assessment of range of motion, pain, function and lymphedema risk factors, risk reduction and intervention for mild lymphedema. However, there will need to be clinically skilled leadership in each province to facilitate implementation of the model and train community-based physiotherapists. These trainers will be physiotherapists or occupational therapists who understand cancer rehabilitation, lymphedema risk and management and the proposed model of surveillance. We propose two trainers per province.

The CSSM trainers would be provided with advanced training related to the proposed model of surveillance through the HSE. The proposed training would be three 2-day workshops, taught by Siobhan O’Reilly Bracken, MISCP, PT, MPA, CLT. MSc-Sports and Jill Binkley, PT, MSc(PT), CLT, FAAOMPT.

Workshop One: Identify and train 2 nominated Chartered Physiotherapists and or Occupational Therapists as trainers and facilitators to pilot the program in each province. Once trained, the liaison would pilot the program in each of the provinces for 6 months.

Workshop Two: Follow-up training for 2 days at 6 months to identify successes, challenges and barriers, provide further training and develop report for the NCCP.

Workshop Three: In the third workshop, liaisons take what the executives agree to roll out and we do an advanced workshop and train the same trainers in the agreed approach.

Health Care Cost Reduction

When impairments and functional limitations are detected early, education and treatment measures can reduce the burden to cancer survivors as well as to the health-care system from a cost perspective. For example, studies have demonstrated that early detection, management and education regarding lymphedema can prevent progression of the condition and in fact, reduce the cost-burden of treating more advanced lymphedema.15 The reinforcement of health promoting behaviors such as exercise, weight control and physical activity is woven throughout the model of care not only decreases lymphedema risk, but also the risk of cancer recurrence, which may have an impact on recurrence, mortality and future costs to the health care system.15,21,22

 

References

(Complete Bibliography Available On Request)

  1. Levangie PK, Drouin J. Magnitude of late effects of breast cancer treatments on shoulder function: a systematic review. Breast Cancer Res Treat. 2009;116(1):1-15.
  2. Ewertz M, Jensen AB. Late effects of breast cancer treatment and potentials for rehabilitation. Acta Oncol. 2011;50(2):187-193.
  3. Hayes SC, Rye S, Battistutta D, Newman B. Prevalence of upper-body symptoms following breast cancer and its relationship with upper-body function and lymphedema. Lymphology. 2010;43(4):178-187.
  4. Schmitz KH, Speck RM, Rye SA, Disipio T, Hayes SC. Prevalence of breast cancer treatment sequelae over 6 years of follow-up: The Pulling Through Study. Cancer. 2012;118(8 Suppl):2217-2225.
  5. Leidenius M, Leppänen E, Krogerus L, von Smitten K. Motion restriction and axillary web syndrome after sentinel node biopsy and axillary clearance in breast cancer. Am J Surg. 2003;185(2):127-130.
  6. Nesvold IL, Fossa SD, Holm I, Naume B, Dahl AA. Arm/shoulder problems in breast cancer survivors are associated with reduced health and poorer physical quality of life. Acta Oncol. 2010;49(3):347-353.
  7. Deura I, Shimada M, Hirashita K, et al. Incidence and risk factors for lower limb lymphedema after gynecologic cancer surgery with initiation of periodic complex decongestive physiotherapy. Int J Clin Oncol. 2015;20(3):556-560.
  8. Smith BG, Hutcheson KA, Little LG, et al. Lymphedema outcomes in patients with head and neck cancer. Otolaryngol Head Neck Surg. 2015;152(2):284-291.
  9. Campbell KL, Pusic AL, Zucker DS, et al. A prospective model of care for breast cancer rehabilitation: function. Cancer. 2012;118(8 Suppl):2300-2311.
  10. Hayes SC, Janda M, Cornish B, Battistutta D, Newman B. Lymphedema after breast cancer: incidence, risk factors, and effect on upper body function. J Clin Oncol. 2008;26(21):3536-3542.
  11. Hayes SC, Johansson K, Stout NL, et al. Upper-body morbidity after breast cancer: Incidence and evidence for evaluation, prevention, and management within a prospective surveillance model of care. Cancer. 2012;118(8 Suppl):2237-2249.
  12. Stout Gergich NL, Pfalzer LA, McGarvey C, Springer B, Gerber LH, Soballe P. Preoperative assessment enables the early diagnosis and successful treatment of lymphedema. Cancer. 2008;112(12):2809-2819.
  13. Stout NL, Pfalzer LA, Levy E, et al. Segmental limb volume change as a predictor of the onset of lymphedema in women with early breast cancer. PM R. 2011;3(12):1098-1105.
  14. Stout NL, Binkley JM, Schmitz KH, et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2191-2200.
  15. Stout NL, Pfalzer LA, Springer B, et al. Breast cancer-related lymphedema: comparing direct costs of a prospective surveillance model and a traditional model of care. Phys Ther. 2012;92(1):152-163.
  16. Springer BA, Levy E, McGarvey C, et al. Pre-operative assessment enables early diagnosis and recovery of shoulder function in patients with breast cancer. Breast Cancer Res Treat. 2010;120(1):135-147.
  17. Gerber LH, Stout NL, Schmitz KH, Stricker CT. Integrating a prospective surveillance model for rehabilitation into breast cancer survivorship care. Cancer. 2012;118(8 Suppl):2201-2206.
  18. Harris SR, Schmitz KH, Campbell KL, McNeely ML. Clinical practice guidelines for breast cancer rehabilitation: Syntheses of guideline recommendations and qualitative appraisals. Cancer. 2012;118(8 Suppl):2312-2324.
  19. Meade E, McIlfatrick S, Groarke AM, Butler E, Dowling M. Survivorship care for postmenopausal breast cancer patients in Ireland: What do women want? Eur J Oncol Nurs. 2017;28:69-76.
  20. Binkley JM, Harris SR, Levangie PK, et al. Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2207-2216.
  21. Holmes MD, Chen WY, Feskanich D, Kroenke CH, Colditz GA. Physical activity and survival after breast cancer diagnosis. JAMA. 2005;293(20):2479-2486.
  22. Mehra K, Berkowitz A, Sanft T. Diet, Physical Activity, and Body Weight in Cancer Survivorship. Med Clin North Am. 2017;101(6):1151-1165.

VHI Women’s Marathon 2019

Siobhan and colleagues from the Irish Society of Chartered Physiotherapy volunteering at The VHI Women’s mini-marathon. Once finished runners enter the Wellness Arena to cool down and recover. Using mats, foam rollers and tennis balls, tight muscles and sore feet are gently massaged and stretched to ease any soreness and help recovery. It’s an emotional day with people running after serious illnesses, to raise money for charities and in memory of lost loved ones. The weather was beautifully warm and windy, families and friends relaxed and chatted afterwards in the beautiful Merrion Square Park. “A special event good for the soul”, said Siobhan 

Pink Ribbon Program

Pink Ribbon

The Pink Ribbon Program

Once breast cancer patients has recovered free and painless mobility of the chest and arm of the affected side they can start strengthening to safely:

  1. Restore shoulder strength and movement
  2. Restore ability to do activities of daily living (ADLs).
  3. Return to recreational activities and high-level sports.

There are many approaches to strengthening after breast cancer including The Pink Ribbon Program which is popular with women all over the world.

What is the Pink Ribbon Program?

This Pink Ribbon Program was designed by breast cancer survivor and exercise Physiologist Doreen Puglisi MSc in 2004. Siobhan has studied with Doreen and is also a Certified Pink Ribbon Instructor.

Pink Ribbon Program General Guidelines

  1. Talk to your doctor and your Physiotherapist before you start this or any exercise program after breast cancer treatment even if treatment was several years ago
  2. Notify your doctor and your Physiotherapist if you experience unusual swelling or tenderness.
  3. Progress slowly and try to avoid missing classes so you build strength steadily.
  4. Wear comfortable, loose clothing when doing exercises.

The Pink Ribbon Program is 22 exercises listed below in 4 phases.

The warm up

Starting position: Sitting on edge of a stool on a Yoga mat.

  • Breathing
  • Shoulder rolls
  • Neck stretch tension release

Phase 1

Starting position: Sitting on edge of a stool on a Yoga mat.

  1. Seated shoulder slides
  2. Open elbows

Staring position: Lying face up on Yoga mat, folded towel behind head, knees bent.

  1. Overhead stretch
  2. Reach for the sky
  3. Arm scissors
  4. Supine puppet

Phase 2.

Starting position: Sitting on the edge of a stool on a Yoga mat.

  1. C-Curve.
  2. Lateral flexion.

Starting position: Sitting on right hip with both legs folded to the left.

  1. Mermaid stretches.

Starting position: Lying face up on Yoga mat, folded towel behind head, knees bent.

  1. Arm circles supine.

Starting position: Seated on Yoga mat, legs crossed, hands together in prayer.

  1. Inner peace stretch.

Phase 3.

Starting position: Seated on edge of a stool on a Yoga mat.

  1. Seated puppet

Starting position: Lying face up on Yoga mat, folded towel behind head, knees bent.

14a. Toe taps

14b. Modified Toe Taps for TRAM – one-foot stays on the floor, still in imprint, engage core, hinge at the hip.

  1. Hip lift.
  2. Hip swivel and Knee Drop.

17a. Half Roll back

17b. Modified half Roll Back – in seated position, place hands on balance ball in front and stretch forward.

Starting position: Kneeling on Yoga mat with hands on balance ball

  1. Modified Sliding Child’s Pose.

Phase 4

Starting position: Standing on a Yoga mat, with the band secured under one foot, the ends of the TheraBand in each hand.

  1. Lat Pull.
  2. Back Row
  3. Shoulder Side Raise
  4. Side Stretch and Pull.

Cool down

Starting position: Lying face up on Yoga mat, folded towel behind head, knees bent.

Find a Certified Pink Ribbon Instructor in your Area.

To find an instructor in your area go to http://www.pinkribbonprogram.com/?page_id=12 and select the country listed or select Other International

The program is comprised of 22 exercises in 4 phases and is available on Amazon for $12.99 Pink Ribbon Program: Post-Operative Workout Enhancing Recovery

by Doreen Puglisi M.S. | Jul 21, 2010

The TheraBand beginners set is available on Amazon for $13.99

TheraBand Resistance Bands Set, Professional Non-Latex Elastic Band for Upper & Lower Body Exercise

*****

Manual Lymph Drainage (MLD)

Final Manual Lymph Drainage (MLD)

Manual Lymph Drainage (MLD)

MLD is a massage technique developed by Dr Emil Vodder to stimulate and drain the body’s lymphatic system and reduce swelling. Siobhan is a Certified Lymphedema Therapist (CLT) since 1996. She uses these specialised MLD techniques and sequences to stimulate lymphatic nodes and vessels and move lymph fluid along to the deeper system for processing. In breast cancer rehab for example, MLD is used in combination with manual therapy, decongestive exercises and compression sleeves to drain the treatment area.

Long term lymphoedema care.

When patients need long term care, Siobhan with refer the patient to lymphoedema services and MLD therapists in their area. MLD therapists in Ireland are listed by location on http://www.mldireland.com

Conditions we treat with MLD include:

  • Cancer treatment.
  • Post-surgical swelling.
  • Lipoedema in the legs.
  • Pregnancy related swelling.
  • In sports.
  • Sinusitis sufferers.

Therapies

Pink Ribbon

Therapies

Treatment in provided in a warm and comfortable atmosphere.

We specialise in the aftercare of:

Breast cancer surgery

And

  • Gynaecological cancer surgery.
  • Skin cancer surgery.
  • Head and neck cancer surgery.
  • Sarcoma surgery.

Symptoms such as.

  • Shoulder pain and stiffness
  • Muscle tension
  • Fibrosis
  • Cording
  • Adhered scars
  • Swelling and lymphoedema
  • Neck stiffness and pain
  • Back complaints
  • Hip complaints
  • Knee stiffness and swelling

Therapies

  • Soft Tissue Mobilisations
  • Scar therapy
  • Cording and axillary web therapy
  • Myofascial release therapy
  • Massage
  • Trigger Point Massage
  • Relaxation therapies
  • Breathing exercises
  • Therapeutic exercises.
  • Manual Lymph Drainage. (MLD)
  • Compression therapy (i.e. measuring and fitting compression garments).

Breast Cancer Rehab.

In many cases patients recover full and pain-free mobility after instruction on home exercising by the hospital based Physiotherapists. In some cases, however, significant symptoms occur and it is these symptoms that benefit from specialised treatment.

Siobhan specializes in the treatment of these acute problems. She offers evidenced based treatments that quickly lead to the improvement of these symptoms. Her approach is based on the most recent published studies.

Survivorship.

An emerging standard of care in breast-cancer-surgery-after-care, includes screening for changes in limb volume and detecting early stage lymphoedema during the survivorship years.

Screening for early lymphoedema and other sequelae helps avoid serious impairments from developing and includes taking standardised circumferential measures of the treatment-side arm either before treatment starts or soon there-after.

Therapists can use these measures to compare and identify changes in arm girth during scheduled follow-up visits. For example, the arm’s girth may be decreased possibly due to guarding and disuse or it may be increased possibly due to accumulating lymphoedema. In either case these objective measures show changes over months and years during the survivorship years and guide rehab as needed.

Siobhan takes these measures as a standard part of her initial assessment and at subsequent reviews and can recommend therapies as needed.

If you have further questions, please contact us by phone or by sending us an email to siobhan@theoreillycentre.ie

Air Travel and Holiday Tips for People with Lymphoedema

Air Travel and Holiday Tips

Lymphedema Air-travel and Vacation Tips  

There is nothing quite like a wonderful holiday to chase the blues away and we in Ireland are spoiled for choice. This article deals with lymphedema, airline travel and vacation challenges, so you may learn how to reduce your risk of developing lymphedema, or minimise your risk of flare ups. Lymphedema is the accumulation of protein-rich fluid in tissues with inadequate lymphatic drainage. It is a chronic and progressive condition without a cure. As with all chronic conditions successful self-management is the key to you leading a full and active life.

The information in this article is filled with practical information and tips relevant to vacationing with lymphedema to help you may make good decisions quickly.

I have combined recommendations from the National Lymphedema Network (lymphnet.org)  position papers “Lymphedema risk reduction practices” and “Healthy habits for people at risk for lymphedema”, I also reviewed the latest research on flying and finally added in some practical tips shared by my patients.

Individualized risk-reduction practices

No two lymphedema patients are the same. Each person is unique and because lymphedema may be caused by many different factors, each person with lymphedema or each person who is at risk for lymphedema is advised to have their risk-reduction practices individualized. Before you travel, talk with your lymphedema professional to figure out what your risks are and what will work best for you.

First know “the conditions most favourable to lymph flow”.

Lymph flow is facilitated by several key factors including:

  1. An intact and robust lymphatic system.
  2. A well-rested and hydrated body.
  3. Intact meticulously clean and healthy skin and nails.
  4. Lean active pumping muscles.
  5. A normal body mass index (BMI).
  6. Well-functioning unrestricted lungs and breathing movements.

Flying and lymphedema.

Air travel today is safer and more affordable than ever. You may be golfing in sunny Spain in the summer or skiing in Chamonix in the winter. It both cases you will be flying. Airline travel is associated with conditions that challenge our anatomy and physiology and contribute to swelling. For example, your flight may include;

  1. You may arrive tired after a sleepless night getting packed.
  2. You may arrive tired because it was an early take-off time.
  3. There may be crowds at check-in and at security which could mean long slow queues and lots of standing around.
  4. During the flight, you may be sitting inactive for several hours, with seat belts around your middle, in a tight seat.
  5. Flight cabin pressure is similar to altitudes of 6,000 and 8,000 feet. As altitude increases compressive pressure on veins and lymph vessels decreases which may slow the flow of blood in the veins and lymph fluid in the lymph vessels.
  6. At these altitudes air is drier and less dense with oxygen which may cause you to feel dehydrated and drowsy.
  7. The compounding effects of prolonged standing, prolonged inactivity, seats and belts, dehydration, drowsiness plus the cabin pressure may contribute to reduced flow and stasis of the body’s blood and lymphatic fluids and may cause swelling particularly in the lower body, ankles and feet.

Tips for lymphedema and flying. 

Plan ahead and use the help airports offer. 

  • Arrive at the airport well rested and in good time to avoid stress and delays.
  • Book a wheelchair to reduce standing time.
  • Procure a credit card with an airline partnership so you can check in promptly at the business desk
  • Check-in online with carry-on luggage.
  • Ask the flight attendant for assistance to store the luggage in the overhead bin for you and avoid straining any recent chest surgery or radiation.

Hydrate 

  • Sip water and plenty of it.
  • Avoid sweet drinks, caffeinated drinks and alcohol during your flight.
  • Buy 2-3 bottles of water in duty free so you do not have to wait for a busy flight attendant during the flight.

Move around.

  • Book an aisle seat.
  • Keep your lymphedema limb on the outside and move it freely.
  • Sleep on the other arm.
  • Relax the limb and encourage flow by opening up the angles at the hip, knee and ankle for the leg or at the shoulder, elbow, wrist and fingers in the arm.
  • Move around the plane.
  • Slip between the section dividers, do ankle pumps and hip extensions to pump the lymph fluid past the hips and knees towards your heart and lungs.
  • Finally, sipping water throughout the flight will also make you need the bathroom more than your fellow passengers and an aisle seat will help you avoid disturbing them.

On holiday with lymphedema 

Bug bites and mosquitos.

  • Bites cause local pain and inflammation, itching and scratching. Bites and scratching can lead to cellulitis as they open skin and let bacteria in. Lymphedema is a high protein oedema which bacteria will consume and rapidly multiply, spreading the infection.

Sunburns

  • A certain amount of sun is good for us however too much may cause pain, inflammation and swelling over large sections of your body and increase the burden on a compromised lymphedema limb.

Extreme of low or high temperatures

  • Whether it is a sunny or snowy vacation, you may be exposed to extremes of temperatures. High and low temperatures also exist at different times of the day. Extremes of temperatures challenge the circulatory and lymphatic systems and prolonged exposure increases the challenge.
  • Figure out the time of day best for you.
  • Limit Jacuzzis and hot-tubs to less than 15 minutes.

Dehydration

  • Depending on the location, its temperature, its altitude, the amount of activity you are doing and the time of day you are doing it, you may need to drink more a lot water to meet your needs and avoid dehydration and a feeling of heaviness in the limb.
  • A well hydrated body’s urine is a lighter shade of gold and easily observed.

Over-use injuries and lymphedema

  • Golf and tennis players love to play longer and more frequently when on vacation which is often a lot more than at home.
  • Overuse injuries may cause pain and swelling and even cellulitis in a lymphedema limb.

Tips for lymphedema on vacation. 

Pack a location specific first-aid kit.

When you come prepared you may quickly apply the right remedy. Items may include:

  • Light back pack to carry the kit
  • A water bottle
  • A sun hat
  • Long sleeved high collared shirts to keep lymphedema arms cool and sun protected
  • Light loose pants to keep lymphedema legs cool and sun protected
  • Waterproof sandals or flip-flops to wear poolside and on the beach to protect feet from injury and infection.
  • UV and Jelly fish sting protection leggings ecostinger.com
  • Sunscreen cream for sunny and snowy vacations.
  • Sunburn cream for sunny and snowy vacations
  • Wipes and plasters
  • Mosquito repellent spray
  • A tube anti-itch/anti-inflammatory cream
  • Anti-histamine tablets
  • A tube of anti-bacterial cream
  • A filled prescription of antibiotics

Know your numbers.

  • Before you travel know your baseline data points so you can pick up and respond to changes in:
  • Size
  • Sensation
  • Colour
  • Temperature
  • Skin condition.
  • Your lymphedema professional may assist you in getting to know your baselines and how to track and respond to changes.

Cellulitis signs and symptoms

Mosquito bites, painful sunburns, inflammation or injury to your lymphedema limb may result in a flare up or even a cellulitis infection in that limb on vacation. Cellulitis is an urgent medical situation. The signs and symptoms of cellulitis skin infection in an area of impaired lymph drainage may include:

  • A feeling of overall illness or flu-like symptoms
  • Redness, warmth, pain, fever
  • Cellulitis episodes may lead to worsening lymphedema. When addressed early the doctor or emergency room nurse will treat cellulitis with oral antibiotics, when its advanced intravenous antibiotics may be needed and/or a hospital stay

Managing cellulitis on vacation

  • Pack a filled prescription of antibiotics.
  • Know the contact details of a local GP at your vacation place
  • Know the address and directions to the local hospital.
  • Finally, when you return home after a cellulitis infection, see your lymphedema professional to determine if you need a new course of therapy or a new garment as the limb measurements may have changed.

Book a hotel with a pool.

Holidays may offer a variety of exercise options. Fortunately, water based exercise is often accessible. Hydrostatic pressure increases as you go deeper into the pool or ocean. At 1 metre, it is 70mmHg of pressure on the feet, when compression garments exert between 20 and 40mmHg of pressure. Hydrostatic pressure affects our anatomy and physiology in the opposite way to altitude pressure. The increased pressure on the submerged limbs acts like a comfortable compression garment that’s comfortable. This facilitates lymph flow and eases swelling in the extremities. Lymphedema loves water based exercise, when possible book a hotel with a pool or source the local pool.

Air travel, lymphedema and compression garments.

If you have lymphedema, The National Lymphedema Network (lymphnet.org) recommends: 

“That people with a confirmed diagnosis of lymphedema wear properly fitting compression garments for air travel”.

The airline and vacation tips listed above all apply to reduce your risk of a flare-up when on vacation; arrive on-time and rested, ask for assistance when needed, hydrate, book an aisle seat so you may move around as often as you wish.

If you are at risk for lymphedema

If you have had cancer treatment involving the lymphatic system and don’t have lymphedema but are at some risk of developing swelling, please know that the decision to wear a compression garment during air travel is controversial.

The controversy regarding compression garments during air-travel. 

The studies that have been done on compression and prophylaxis are limited and they reached different conclusions that lymphedema is caused or worsened by air travel. One study showed that physically fit women on their way to a competition, who were at risk for breast cancer-related lymphedema had no increase in swelling from air travel. Another study showed that prophylactic compression had the potential to make swelling worse. Because additional research is needed to guide us, The National Lymphedema Network position at this time is:

People at risk for lymphedema who decide to wear prophylactic compression on airplanes should work with an experienced garment fitter and should not self- purchase a garment”.

If, however you choose to go ahead and wear a prophylactic compression garment on an airplane, they advise you wear the garment several times prior to air travel to make sure the garment fits well and has no areas of constriction. If, while wearing a garment on an airplane, the swelling increases or the garment constricts, remove it immediately.

In summary, when you are flying on vacation, plan ahead, know your risks and your data points so you can monitor for changes and quickly manage the common challenges associated with air-travel and holiday destinations. When possible, work with your lymphedema professional to get to know your numbers and your individual risk profile. Prepare well so you are confident and calm and well able to self-manage your lymphedema or risks in the different locations.

10 Tips to better manage Cancer Related Fatigue

10 Tips to Conquer Cancer Related Fatigue

March 2019

#1. Understand Cancer Related Fatigue

Cancer related fatigue (CRF) layers on top of normal tiredness and exhaustion.  Up to 90% of patients treated with radiation and up to 80% of those treated with chemotherapy experience fatigue. (Hoffman M. et al, 2007). 90% of cancer patients rank it more troublesome than pain and anxiety. CRF is different from normal fatigue as it is not relieved by rest or a good night’s sleep. It can persist for months or years after cancer treatment. Being chronically fatigued affects critical aspects of your life including your relationships, job performance and participation in social activities.

#2. Talk to your doctor.

Many different conditions can also cause fatigue such as pain, emotional distress, sleep disturbance, anaemia, and hypothyroidism. (Mock, V et al, 2000) So talk to your doctor who may be able to treat it medically.

#3. Do a CRF Self-efficacy Program ….. they work.

Research shows that self-efficacy focused programs result in less fatigue, improved quality of life, exercise compliance and general self-efficacy. Reif, K. et al (2007). Self-Efficacy is the belief that you yourself have the knowledge, attitude and skills to reduce your CRF. These types of programs, typically include 6, 90 minute sessions. Groups of similarly affected people learn about their CRF and identify ways to improve their self-care by problem-solving, setting realistic goals and reflecting on and tracking their progress.

#4. Score your CRF.

Doctors don’t have a blood test for pain nor for CRF. Both are scored by the patient using the VAS scale of 0 to 10, when 0 is no fatigue and 10 is the worst fatigue you can imagine. When scores are 4/10 or higher it is highly recommended that you talk to your doctor.

#5. Exercise daily.

Being active is one of the top two practices of people who manage their CRF well. Reif, K. et al (2012). Research shows that people with CRF who exercise feel less tired. The American Cancer Society recommends that cancer survivors take part in regular physical activity and aim to exercise at least 150 minutes per week and include strength training exercises at least 2 days per week. ACS (2014).

#6. Ask your Cancer Rehab Physio to make you a exercise plan.

The Cancer Rehab Physio will work with you to establish your baseline and to develop a progress plan. For example a person with severe CRF might start with a 2 minute walk each day for week 1, 4 minute walks for week 2, progress to 6 minute walks for week 3 and so on until by week 15 they are walking for 30 minutes.  Vallance, J. et al, (2006)

#7. Get good at energy conservation.

Practicing energy conservation is the other top practice of people who manage their CRF well. Research on energy conservation programs shows that patients feel less tired when they can effectively prioritise, plan and pace their life’s activities. Packer, T et al (1995) and Reif, K et al (2007).  Contact your local Cancer support centres or National Cancer Society for information about Energy Conservation Programs. Topics covered include:

(a) the value of rest;

(b) budgeting and banking energy;

(c) incorporating rest periods throughout the day;

(d) learning to communicate personal needs to others;

(e) using good body mechanics and posture;

(f ) using energy-efficient appliances and organizing stations of activity;

(g) separating fatiguing tasks into components;

(h) prioritizing and setting standards for activities;

(i) planning rest periods with self-care, productivity, and leisure activities so that a balance can be maintained; and

(j) reviewing course principles and setting short-term and long-term goals.

#8. Make priorities.

Take the time to list your priorities and decide which priority is first second, third etc. then design your week around these priorities. A simple example of a priority would be, you would like to reconnect with your friends. On that day you could conserve energy by doing less work and having a rest before going out so you are alert and comfortable throughout the evening.

#9. Pace yourself.

Pacing takes practice and can be a major adjustment for those who were very busy people before cancer treatment. Pacing is linked to your priorities. The more adaptive and flexible you are the better. In the group classes people are given time to process how well they are pacing and class mates share their experiences and wisdom with each other.

#10. Stay positive.

Research shows that these self-care skills are much improved with a positive attitude. So stay positive, believe in yourself and give yourself the best chance to conquer your cancer related fatigue.

References:

  1. Reif, K et al, 2012. A patient education program is effective in reducing cancer-related fatigue: A multi-centre randomised two-group waiting-list controlled intervention trial. European Journal of Oncology Nursing. Vol 17, Issue 2. April 2013. Pages 204-213
  2. Hofman, M et al (2007) Cancer-Related Fatigue: The Scale of the Problem. doi: 10.1634/theoncologist.12-S1-4The OncologistMay 2007 vo 12 Supplement 1 4-10
  3. Mock, V et al, NCCN Practice Guidelines for Cancer-Related Fatigue (PMID:11195408). Oncology (Williston Park, N.Y.)[01 Nov 2000, 14(11A):151-161]
  4. Vallance, J.et al, (2007) Randomized Control Trial of the Effects of Print Materials and Step Pedometers on Physical Activity and Quality Of Life in Breast Cancer Survivors. Journal Clinical Oncology, 25, 17 (June 10), 2352-2359.

Exercise Styles

Exercise Styles

Exercise Styles

There are so many wonderful styles of exercising all with there own special gifts. The following is a brief description of the styles I am familiar with. If you wish me to highlight another style, that you think our readers would enjoy learning more about please email me and I will post it on this page.

  • Yoga
  • Pilates
  • Dance classes
  • Tai Chi
  • Circuits
  • Body sculpt
  • Spinning
  • Kickboxing
  • Kettle bells
  • Jogging
  • Running
  • Swimming
  • Hydro-aerobics