Living with lymphedema means lifestyle changes

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Living with lymphedema means lifestyle changes

Postby patoco » Thu Jan 31, 2008 7:09 am

Living with lymphedema means lifestyle changes

By Lynn Taylor Rick, Journal staff Saturday, January 26, 2008

To Teresa Postma, her lymphedema is as life-altering as the cancer treatment that caused it.

“It’s not life-threatening, but it does change your life,” she said. “You have to relearn how to do a lot of things. And this is for the rest of my life.”

Lymphedema occurs when lymphatic fluids accumulate in the body, most often in the arms and legs. The accumulation causes the limbs to swell, sometimes dramatically.

Lymphedema develops when lymphatic vessels are missing or impaired or have been damaged or removed in the treatment of such diseases as breast cancer.

If lymph nodes are removed or severed during breast cancer surgery, the remaining lymph nodes will occasionally pick up the slack. However, lymphedema occurs in about 25 percent of breast cancer surgery patients.

Onset of lymphedema can begin shortly after surgery or even years later. And while lymphedema is rarely life-threatening, it becomes an aesthetic and emotional reminder of the cancer that caused it.

It also requires a lifetime of vigilance, says Postma.

Postma first noticed a painful mass in her breast two years ago, at the age of 37. A mammogram showed a large tumor in her breast.

Doctors began by shrinking the aggressive tumor with chemotherapy and then removed the breast along with lymph nodes. Postma underwent still more chemotherapy and 36 weeks of radiation. Doctors now consider her cancer in an “observation mode.”

About four months after her cancer treatment ended, Postma noticed a slight swelling in her right hand. Because a representative from the American Cancer Society had warned her about lymphedema, she immediately sought care at the Rapid City Regional Rehabilitation Institute.

Physical therapist Karine Carpenter, who specializes in lymphedema treatment at the Institute, said patients need swift care when they suspect lymphedema because treatment can reverse Stage I lymphedema cases. Once to Stage II or III, lymphedema is irreversible.

Treatment of lymphedema combines a series of light massages called manual lymph drainage and specific pressure used on the affected limbs. It’s a routine that lymphedema patients like Postma incorporate into their daily lives.

Postma, whose lymphedema is Stage II, ends each day with manual lymph drainage, which promotes her body’s ability to transport lymphatic fluids effectively. She then wraps her hand and arm in gauze, providing enough pressure to keep swelling at bay without causing finger numbness. Then she covers the wrapping with a heavy night garment, which adds more pressure. She also elevates her arm for 20 minutes each evening.

In the morning, she removes the night compression garment and wraps and puts on a lighter garment that she wears throughout the day.

“Consistent use of the compression garment is very important,” Carpenter said. “It is a chronic ailment.”

Lymphedema sufferers are at an increased risk of infection in the affected limb, which means they must be extra cautious with injury, Carpenter said. They also must avoid heavy lifting or excessive use.

Those restrictions have affected Postma the most.

“I was very active,” Postma says of her life before cancer. She played tennis, basketball and volleyball. She also played the guitar and flute.

Because of lymphedema, Postma has had to give up or limit most of those activities. She can’t lift her kids with her right arm and can’t even push a shopping cart around the grocery store.

The sleeve limits her ability to do things such as braid her daughter’s hair and play the flute and guitar.

“It’s the life changes. So many things that I loved to do … Those are not options for me,” she said.

Even writing has become an issue for Postma, who once loved to journal. She’s in the process of learning to write with her left hand.

Postma admits that early on, she dreaded her nighttime routine. It not only reminds her family of the cancer, but it takes time and energy. She’s since grown accustomed to it.

“I made my peace with it …I pray for people. That’s my prayer time,” she said. “How do you turn a curse into a blessing? I don’t hate it like I used to.”

Carpenter said lymphedema treatment does take time and effort, but it’s the only way to avoid sometimes drastic swelling.

It also allows cancer patients to maintain their appearances and move on from their cancer treatment. “It’s very important to people,” she said.

While Postma is far from comfortable with her lymphedema treatment routine, she’s finding it easier with each day. “I’m not friends with it yet,” she said.

But she wants others like her to know there is help and hope. And lymphedema can be managed.

“It’s OK to feel overwhelmed by it … but don’t stay there. You can’t stay there because there are too many options,” she said. “Get there (to the doctor) right away. Don’t wait.”

Contact Lynn Taylor Rick at 394-8414 or

Rapid City Journal

* * * * *

*Editor's Note*

I was concerned abouat the phrase "Not life-threatening," so I submitted a response which the newspaper was kind enough to print.

Pat O'Connor
wrote on Jan 26, 2008 7:50 AM:

" This is excellent and I appreciate you posting the article.

I would appreciate the opportunity though of making one correction.

The complications of untreated, ignored or improperly treated lymphedema can indeed be life threatening.

They are:

1. Infections such as cellulitis, lymphangitis, erysipelas. This is
due not only to the large accumulation of fluid, but it is well
documented that lymphodemous limbs are localized immunodeficient and
the proein rich fluid provides an excellent nurturing invironment for
bacteria. See our page Infections Associated with Lymphedema for
further information on infections.

2. Draining wounds that leak lymphorrea which is very caustic to
surrounding skin tissue and acts as a port of entry for infections.

3. Increased pain as a result of the compression of nerves usually
caused by the development of fibrosis and increased build up of
fluids. See Lymphedema and Pain Management.

4. Loss of Function due to the swelling and limb changes.

5. Depression - Psychological coping as a result of the disfigurement
and debilitating effect of lymphedema.

6. Deep venous thrombosis again as a result of the pressure of the
swelling and fibrosis against the vascular system. Also, can happen
as a result of cellulitis, lymphangitis and infections. See also

7. Sepsis, Gangrene are possibilities as a result of the infections.

8. Possible amputation of the limb.

9. Pleural effusions may result if the lymphatics in the abdomen or
chest are to overwhelmed to clear the lung cavity of fluids.

10. Skin complications such as dry skin, splitting, plaques and
nodules, susceptibility to fungus and bacterial infections.

12. Pain ranging from mild in early lymphedema to severe in late
stage lymphedema.

13. Lymphatic cancers which can include angiosarcoma, lymphoma;
Kaposi's Sarcoma; lymphangiosarcoma (Stewart_treves Syndrome);
Cutaneous T-Cell lymphoma; Cutaneous B-Cell lymphoma;
Pseudolymphomatous Cutaneous Angiosarcoma.

See also: Primary Lymphedema and Cancer for a discussion and
Lymphatic Cancers Secondary to Lymphedema.

Note: These cancers are rare and are usually associated with long
term, untreated or improperply treated lymphedema. Typically occuring
in stage three or four; quite rare in stage two.

14. Skin complications possible in stages 3 and 4 include papllomatosis; placques including "cobblestone" appearing placque;
dermatofibroma; Skin Tags; Warts and Verrucas; Mycetoma skin fungus;
dermatitis and many lymphedema patients report increased problems
with psoriasis; eczema and shingles. I would suspect this may be due
to again, the immunocompromised condition of the arm or leg afflicted
with lymphedema.

15. Documented but rare complications in late stage also can include
Lymphomatoid Papulosis; Cutis Marmorata; Acroangiodermatitis;
Dermatolymphangioadenitis (DLA); Papillomatosis cutis carcinoides

16. Debilitating joint problems. This is caused by a combination of
the excess fluid weight and the constant inflammatory process that
accompanies lymphedema. As we have gotten older, many
lymphedemapatients are having total knee replacement, total hip
replacement, or total shoulder replacement while others are
experiencing carpal tunnel syndrome and are having carpal tunnel
surgery or experiencing shoulder problems associated with lymphedema
and must haverotator cuff surgery

If you go to this page, there will be a link on each term that will take you to documentation in the medical literature for verification.

Complications of Lymphedema
Lymphedema People

It is imperative that lymphedema be diagnosed quickly and treatment/management be undertaken as soon as is possible.

Thank you

Kind regards

Pat O'Connor

Lymphedema People
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