Customer Reviews

Coping with Lymphedema

5 star:		(6)
4 star:		(2)
3 star:		(1)
2 star:		(1)
1 star:		(0)

 

 

This book confirms what took many hours of searching on my own time to comprehend the complications and control of lymphedema, a medical condition I was not forewarned might develop following breast surgery. I highly recommend this book to any person facing surgery and/or radiation involving lymph nodes as well as anyone who currently has lymphedema.

Although I commend the authors for addressing an issue that no one else has been able to address through this venue, I find it to be lacking in much information concerning Lymphedema of the lower extremities. While it is true that survivors of breast cancer are at risk for the development of lymphedema those with lower extremity lymphedema have been strugging with it for many years. In other words, lymphedema is not new on the scene. The book adequately addresses the issue of LE in relationship with BC but leaves barely touches on the remainder of the population with LE. I did not enjoy the book and did not find it at all helpful.

First, anyone who is looking for books on lymphedema will find out fast that books on lymphedema are kind of like treatments for the the disorder: mighty few and far between. Of all the available books, this one is the best of a thin, thin crop. There are chapters on the origins of lymphedema, symptoms, the (few) treatments, diet and exercise, coping and other life issues. And while they are very informative, as other reviewers have pointed out, the authors do focus heavily on upper limb lymphedema. Readers with lower limb lymphedema get tossed a bone of info targeted to their needs every now and then, but the primary emphasis of this book is on lymphedema as the result of breast cancer treatment. Still, readers with lower limb lymphedema can take most of the info in this book and apply it to their own situation. This book is better than nothing, which is pretty much what will be available should this book go out of print. It's a pity that a disorder that affects so many people is virtually ignored by the medical and publishing communities.

THE BOOK: 1998; 286pp; 450 resources listed (products, info, practitioners, researchers, schools, support groups); 122 glossary entries; 52 references; ~800 index entries. 43 recommended books listed: Lymphedema(2), cancer(7), general medical(3), alternative medicine(15), diet and nutrition(10), self-help(3).

LYMPHE-WHAT?

Primary (hereditary) Lymphedema (1-in-6000)...may involve blocked/oversized/underdeveloped lymph vessels. More common secondary Lymphedema results from disease/other trauma.

Grade1: Lymphedema often begins with pitting edema - tissues swell due to excess fluid. Small indentations form when pressing with a finger.

Grade2: Lymphedema is chronic, and elevation may no longer help. The skin no longer pits, but hardens as fibrous tissue develops. Thick, coarse skin may ulcerate, and bacteria may enter and bring on extremely painful cellulitis, a soft-tissue skin infection.

Grade3: Lymphedema may be established by repeated attacks of cellulitis as underlying tissue hardens.

DIAGNOSTIC METHODS: tape measure; magnetic resonance imaging; Doppler MRI, lymphangioscintigraphy, color flow Doppler

WHAT INCREASES LYMPHEDEMA VULNERABILITY?
-other family affected
-malformation of veins
-mechanical injuries to lymphatic system
-obesity
-infections impacting lymphatics
-other-leg Lymphedema
-vein surgeries
-lymph node removal
-surgery/treatments...underarm/neck/groin areas
-surgery/treatment for prostate/testicular/colorectal/bladder/pancreatic/liver/skin cancer
-internal scar tissue
-radiation therapy
-chemotherapy(probably)
-Tamoxifen

PREVENTING LYMPHEDEMA BY PREVENTING CANCER:
Numerous books teach cancer prevention, and Mary Kerney Levenstein's Everyday Cancer Risks and How to Avoid Them aptly and broadly does this. (The name, Mary Kerney, or the ISBN, 0895295059, works well in an Amazon search.) Also, impediment to lymph flow by bras is argued as a possible causation for breast cancer in, Dressed to Kill: The Link Between Breast Cancer and Bras.

PREVENTING OF LYMPHEDEMA OR ITS WORSENING:
-get needed Lymphedema treatment
-prevent all skin penetrations/constrictions involving affected limb/area
-during radiation therapy: examine area, use ointment, avoid chlorinated pools, hot tubs/showers
-during chemotherapy: wear pink wristband on affected limb, get IV/mediport installed in unaffected area.
-during hormone therapy: low-salt, low-protein diet; avoid overheating; avoid water retention.

CONVENTIONAL TREATMENTS:
-Staple of medical practice in Europe 100+ years, but recent in U.S.
-Treatment goal: open secondary lymphatic vessels to drain affected limb into normally functioning tributaries.
-Manual lymph drainage, MLD: specialized, sequenced, slow-rhythm, gentle massage pressure that moves lymph fluid.
-Complete/complex decongestive physiotherapy, CDP, may be best (MLD plus scrupulous skin cleansing, plus compression bandages and garments, plus exercise). Nine advantages listed.
---Self bandaging skill necessary due to exercising and airplanes.
---If pregnant, coordinate obstetrician, vascular specialist and Lymphedema therapy expert.
---a compression garment is paramount for reducing swelling and keeping it reduced. Never wear on untreated, swollen limb
---diuretics: Some experts say detrimental. May help if edema plus Lymphedema.
-Pump, newer: peristaltic gradient compression system more closely mimics natural lymph pumping.
---avoid pump if: primary Lymphedema; blood vessel disease; severe arteriosclerosis; massive edema from congestive heart failure; deformity of limb; metastatic cancer in the limb; dermatitis; gangrene; recent skin grafts; deep venous thrombosis; cellulitis(especially).
---should not be used at home
---removes fluid, not protein,...which can become fibrotic and impede lymph flow.
---complications in 30-55% with leg Lymphedema
-Steroids: powerful drugs that can depress immune system, cause water retention and cause mental depression. Occasionally used for inflammation or for enlarged lymph nodes or for tumor obstruction of lymph flow.
-Benzopyrones, in clinical trials in Australia, France, India and China, have improved Lymphedema without compression garments. Minor side effects, but excessive dosage caused liver damage and possibly death. Many US physicians skeptical. National Lymphedema Network and others strongly advise against Benzopyrones. Not FDA approved, but available at 2000 compounding pharmacies stateside.
-Surgery, for the most part, is considered as a last resort - limited success and high risk of complications.
-Injections of a patient's own white blood cells, in one study, rapidly reduced swelling...
-Accessing improved European treatments requires special effort.
-Pain management strategies: monitoring, refitting compression garment, exercise routine, getting help with skin problems, accessing mind-body techniques, discuss with doctor and Lymphedema therapist.

CRITICAL RESEARCH:
The lymph node that receives dye injected around a cancerous tumor drains that tumor and is the "sentinel" and only lymph node requiring removal and examination.

ALTERNATIVE TREATMENTS:
Alternative medicine, with an interest in ancient healing practices, focuses on the mind-body connection and on health rather than illness. An alternative remedy may work even if the medical establishment disagrees. (So far the AMA has remained silent on Lymphedma and its treatments.) Alternative (as complementary) medicine enhances the immune system and one's feelings of well-being, both compromised in Lymphedema. Psychoneuroimmunology, guided imagery, hypnotherapy, acupuncture, biofeedback, herbal medicine, homeopathy and meditation are explained.

Is alternative therapy for you? Read a lot; learn practitioner's qualifications; speak with experienced others; monitor progress; report problems; trust your instincts - replace therapist if necessary. For almost all serious cases, using both medical and alternative treatments, along with comprehensive Lymphedema treatment, symptoms lessened, unwanted body fluid decreased, infections decreased, and a relatively normal life returned.

GETTING TREATMENT:
-Choosing Practitioners: Four pages of specific questions for the doctor and Lymphedema therapist
-Choosing Treatment Facility: A good facility is described.

INSURANCE:
Nine strategies, including using attorney, elected state representatives and state insurance committee.

LIFESTYLE CHANGES:
Instructions regarding: survival kit; activity safety; personal care; wardrobe; writing a journal; traveling; aggressive treatment; diet types/helps/caveats; effects of smoking, caffeine and alcohol; recommended exercise types/amounts; specialized exercises;

DEALING WITH YOURSELF AND OTHERS:
-basically an unknown illness - must repeatedly explain.
-family: explain your needs and limitations, and maintain self-compassion; explain to children.
-sexuality: coping skills
-friends: be open, accept help.
-job: illegal to be fired because of ill health - use your union
-job: employer must make reasonable accommodation... ADA

EMOTIONS ADDRESSED:
getting blind-sided, too busy for depression, the mind & the immune system, reactive/clinical depression, anger, fear, self-blame, self-consciousness Even for the most frightening conditions, people often show amazing resilience if they know what is happening, what is entailed, and how to help themselves.

RECOMMENDATIONS:
1. These 1000 words cannot replace the authors' 100,000 words - do read the book.
2. The 2005 Living Well With Lymphedema by Ehrlich et al is also excellent - neither can replace the other.

Thanks for reading

Bill Norwood

This book was very helpful to me. I have had lymphedema for 30 years, and because it is such a rare disorder, it has been impossible to find much information about it. The book exposed many treatment options that I was unaware of previously. Thank you, Joan and Diane, for doing such a wonderful job on the book. I know your book has a limited audience, but we need the information desperately.

This book gave some helpful hints on dealing with the emotions I was having when my arm swelled after treatment for breast cancer, but seemed to say I was just going to have to learn to live with it. In spite of a good resource section, the book left me depressed and feeling hopeless. I have since found another book I use as a "how to" guide and I am managing the selling very well. If you are like me, "Coping with Lymphedema" may not be the most helpful book for you.

This book accurately described lymphedema and ways to control the effects. It also gave resources for caregivers and what to expect for families. Would recommend..

Coping with Lymphedema is a good and thorough book dealing with a tough condition and doesn't get much airplay in the media. The book is laid out well so you can find more quickly find the answers to your questions. I recommend it.

This is a good book to have, if you have or may get lymphedema. It will answer a lot of question.

This book gives you a great overview of what Lymphedema is and it gives you great advice from those who have Lymphedema and how they coped with it. Some doctors do not recognize the condition at first butonce you know what you have, get this book. It will prepare you for what your options are as far as treatment and maintenance once you get it under control. It explains how you will never get rid of the condition but it is controllable. It answers so many questions that you think of after you are told that you have Lymphedema.