Tag Archives: Breast Cancer-Related Lymphedema

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

 

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit  

National Lymphedema Network – Educating Patients Online 

Part 3b of 3b 

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore "What is COPD" tee shirt while she was here.
Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore “What is COPD” tee shirt while she was here.

My young cousin, Malin from Norway is included here because COPD (Chronic Obstructive Pulmonary Disease) began in 1997 for me and led into my long ride into medical conditions – one after the other and my gathering weight attracted lymphedema as surely as fresh bread and butter sticks to peanut butter and strawberry jam. 

“The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise. 

The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema.

Melissa showing me the latest fast, protective lower leg support
Melissa showing me the latest fast, protective lower leg support

Melissa Mercogliano, Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard, WA. recently showed me a new and easy way to add support stockings…easy except for we Tub’ettes.

“One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling. 

20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.

8 One study showed that aerobic and weight-lifting exercise was safely performed without compression in women at risk for breast cancer-related lymphedema.

9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema.

 1-IMG_29033-IMG_29074-IMG_2909

Custom sized, each leg. This pair is old...notice the crinkles below the rubber dotted band. The replacement compression stockings are black.This pair is about one year old.
Custom sized, each leg. This pair is old…notice the crinkles below the rubber dotted band. The replacement compression stockings are black.
This pair is about one year old.

I throw the stockings in a little zippered mesh cloth bag and into the washer on a short cycle, regular soap, extra rinse – cold water and smooth out and let them hang to dry.

I prefer the toe less stocking so my toes don’t get scrunched up and have two different kinds. The little rubbery tips around the tops of both help them from sliding on down my leg and cutting off circulation.  Ask your doctor. 

“A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling. 

Definition of Individuals At Risk for Lymphedema:

Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy.

Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels.

Individuals who have family members with hereditary lymphedema may also be at risk.

An individual’s risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition. 

It is the position of the NLN that:

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II

Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf 

In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self-management).

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual’s usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs. 

References:

1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.

 2.Moseley AL, Piller NB, Carati CJ. The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.Lymphol. 2005;38(3):136-145.

3.Boris M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncol (Williston Park). 1994;8(9):95-106; discussion 109-110.

4.Földi E, Földi M, Weissleder H. Conservative treatment of lymphoedema of the limbs. Angiol. 1985;36(3):171-180.

5.Földi M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, 2nd ed. Munchen, Germany:Urban & Fischer; 2006.

6.Bergmann A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa Leite Ferreira MG, Fabro EA. 

Incidence and risk factors for axillary web syndrome after breast cancer surgery [published online ahead of print October 17, 2011].

Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.

7.Fourie W, Rob KA. Physiotherapy management of axillary web syndrome following breast cancer treatment: discussing the use of soft tissue techniques. 

Physiotherapy. 2009;95(4):314-320. 

 

NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA 94105

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org 

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Several years ago, I called Harrison Medical Center and asked if non-cancer patients with lymphedema could attend their support group meetings.  At that time, it was limited to cancer patients.

Yesterday I called the following number to be certain it was still up to date.  It is and the closest Lymphedema Support Group I know about.

If anyone knows of more, let me know – I can post it here.

 

Kitsap County Closest Support Group 

Northwest Lymphedema Center

Kent, WA (24.11 miles * Meeting times: Date varies  Phone: (206) 575-7775 

 

Tub’etts! 

I’d like to be part of a support group of fatties who NEED to lose weight for their health’s sake – with or without current medical issues. No dues – a scale and occasionally health professionals willing to talk to us – to educate us – to motivate us – guest speakers. 

I have been told that I’m not a good candidate for bariatric surgery…so, before I push that particular button – is there anyone beside me, who wants to be part of an obese/tubby support group to work together for weight loss and good health? 

To lose weight through good nutrition and exercise is my goal. 

We are dying of too much fat, fellow Tubby Ones.

Will you join me in our battle to shed the fat and live healthy?  Let me know…

 

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.

Lymphedema, Kissing Frogs and the Right Match

Greetings!

And another reminder that I am a patient – not a medical person.  My comments are based on my own experiences and others and I take full responsibility for my opinion and perceptions.   My hope is that patients will speak up and question the medical people trying to help us when need be.  They can’t help us without an open and honest dialog.

That said, Lymphedema treatment is available.  Finding the right help at the right time is not easily available and getting the right treatment for the right diagnosis is sometimes difficult.  So is finding the right medical help match for a patient yet both are key to a patient’s survival and the best quality life possible.

Did you ever wonder how many frogs the fabled Princess kissed before she found the right frog?  Well, if frogs were medical providers, patients occasionally need to kiss lots of frogs to get the right match.

Lymphedema is nasty stuff and I was sorry to learn lymphedema can be a real problem for cancer patients, especially breast cancer.

Lower leg lymphedema disease is apparently different though since cancer caused lymphedema support groups don’t allow ‘regular’ lymphedema patients to join.   I know because I looked for close by lymphedema support groups and learned Harrison Medical Center had one.  I called to ask if I could attend a lymphedema support group session and the Harrison spokesperson didn’t think so.  She did promise to ask at the next meeting and let me know.  That was several months ago.

During the pleasant phone conversation, Harrison’s spokesperson asked how I knew I had lymphedema and I had to say I assumed it was caused from years of ignoring edema and pitted edema.

Her question stayed with me though and I recently asked my pulmonologist at the University of Washington Medical Center what caused it and his answer surprised me “Sleep Apnea”  …something to do with ‘insufficiency’…wow, Dr. Christopher Goss, I need to learn more about that!

Lymphedema is lymphedema or isn’t it?  When is lymphedema not lymphedema if

Harrison Medical Center’s Lymphedema Support Group is limited only to cancer patients?

I’m happy to say there is good news for ‘Breast Cancer-Related Lymphedema.’

***

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

JAMA. 2010 Dec 8. Weight Lifting for Women at Risk for Breast Cancer-Related Lymphedema: A Randomized Trial.

Schmitz KH, Ahmed RL, Troxel AB, Cheville A, Lewis-Grant L, Smith R, Bryan CJ, Williams-Smith CT, Chittams J.

University of Pennsylvania School of Medicine and Abramson Cancer Center, Philadelphia (Drs Schmitz and Troxel and Mss Lewis-Grant, Bryan, and Williams-Smith and Mr Chittams); Department of Dermatology, University of Minnesota Medical School, Minneapolis (Dr Ahmed); Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota (Dr Cheville); and Department of Physical Medicine and Rehabilitation, University of Pennsylvania School of Medicine, Philadelphia (Drs Cheville and Smith).

Abstract

Context Clinical guidelines for breast cancer survivors without lymphedema advise against upper body exercise, preventing them from obtaining established health benefits of weight lifting. Objective To evaluate lymphedema onset after a 1-year weight lifting intervention vs no exercise (control) among survivors at risk for breast cancer-related lymphedema (BCRL)

. …

Weightlifting May Not Increase Risk for Lymphedema in Breast Cancer Survivors  http://www.medscape.com/viewarticle/734429

Laurie Barclay, MD

December 17, 2010 — A slowly progressive weightlifting program for breast cancer survivors does not increase the risk for lymphedema, according to the results of a randomized controlled equivalence trial reported online December 8 in the Journal of the American Medical Association.

“Breast cancer survivors at risk for lymphedema alter activity, limit, activity, or both from fear and uncertainty about their personal risk level, and upon guidance advising them to avoid lifting children, heavy bags, or other objects with the at-risk arm,” write Kathryn H. Schmitz, PhD, MPH, from the University of Pennsylvania School of Medicine and Abramson Cancer Center in Philadelphia, and colleagues. “Such guidance is often interpreted in a manner that deconditions the arm, increasing the potential for injury, overuse, and, ironically, lymphedema onset. Adherence to these precautions may limit physical recovery after breast cancer and, for some women, result in lost employment.”

The goal of the study was to compare onset of lymphedema after a 1-year weightlifting intervention vs a no-exercise control group among survivors at risk for breast cancer–related lymphedema (BCRL) who were enrolled in the Physical Activity and Lymphedema trial.

“We specialize in the treatment of acute and chronic orthopedic injuries and the evaluation and treatment of swelling disorders including lymphedema and vascular insufficiency.”

http://colpt.com/about.html

FREQUENTLY ASKED QUESTIONS ABOUT LYMPHEDEMA:

1.     What is Lymphedema?

Lymphedema is an abnormal accumulation of protein-rich fluid (lymph Fluid) and specialized cells (fibroblasts, keratinocytes) in the spaces between tissues throughout the body. When the lymphatic Fluid cannot be readily moved from the extremity to the trunk swelling is seen in the limb.

2.     What causes Lymphedema?

Lymphedema may be primary or secondary. Primary is when swelling is the result of lymph vessels that are too small, too few in number or too wide so the valves cannot work properly.  Secondary occurs from some kind of damage to the system. This could include surgery for lymph node removal, radiation to treat cancer, trauma or parasites that block the lymphatic vessels.

3.     What are the symptoms of Lymphedema?

Symptoms include tightness, swelling or thickening anywhere in the trunk or extremity, feelings of heaviness in the extremity, difficulty fitting into clothing in one specific area. Swelling may increase with activity and decrease with rest.

4.     Why did I get Lymphedema?

Medical science is not able to determine why one person gets lymphedema and the next person does not. It probably has to do with the number of lymphatics you had originally and what percentage are not working.

5.     Is Lymphedema curable?

Lymphedema is not curable; however, it is manageable with treatment.

6. What kind of treatment is available for Lymphedema?

There is a treatment approach called Complex Decongestive Physiotherapy(CDP). This method consists of several parts including manual lymphatic drainage, bandaging, proper skin care, compression garments, remedial exercises, and self-manual lymphatic drainage and bandaging. This treatment can be done by a physical therapist that has extensive training in the subject.

6.     What happens if Lymphedema is not treated?

Lymphedema is chronic and progressive. If it remains untreated the protein-rich fluid continues to accumulate which could lead to increased swelling and hardening (fibrosis) of the tissues.  The protein-rich fluid is a perfect environment for bacteria to flourish which could lead to recurrent infections. Untreated lymphedema can also lead to skin breakdown and loss of motion in the joints of the affected limb.

****

We have one life and, my opinion, a patient’s best bet is to get educated about whatever we have and learn how to best handle it.

Kitsap County Library System has a book on Caregiving for Lymphedema at the main library.

There are other helpful books the Silverdale Library (360-692-2779) had donated to them:

100 Questions & Answers about Lymphedema

Lymphedema: An Information Booklet

Lymphedema Management:  The Comprehensive Guide for Practitioners

Melissa at the Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard mentioned using a soft baby brush to clean the affected skin and it worked fine once my husband duck taped the baby brush to a section of pvc pipe.  The extra length makes leaning over easy for a lung patient and he made two – the second one I use to apply the skin lotion.  Dry skin cracks too easily for lymphedemia’ites.

I thought you’d enjoy seeing this old car photo.  December 2009 I was rushing to Harrison Silverdale ER but had to stop to take this photo! I don’t know why the old car was there, what kind of car it is, who owned it or why it was parked with the stuffed critters outside the ER.

Part 4 of 4

More later… Sharon O’Hara