Real Complications of Lymphedema

Real People Real Complications of Lymphedema

Perhaps after Barbara’s article,  it is time to post some illustrations of what really does happen to those of us with lymphedema.

Think this doesn’t apply to you?

Remember if you have ever had any of these experiences you are at risk and a possible victim of lymphedema: 

1.) Lymph node removal for biopsies

2.) Serious infections that include lymphangitis, cellulitis or erysipelas.

3.) Deep invasive wounds that might tear, cut or damage the lymphatics.   

4.) Radiation treatments, especially ones that are focused in areas that might contain “clusters” of lymph nodes

5.) Morbid obesity can cause secondary lymphedema by “crushing” the lymphatics

6.) Serious burns, even intense sunburn 

7.) Infection of the microscopic parasite filarial larvae, though this is more common in tropical countries

8.) For primary lymphedema any person who has a family history of unknown swelling of a limb

9.) Spider or insect bites

10.) Surgeries that cut or damage the lymph system.

COMPLICATIONS

 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.                       

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.

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.

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. I just had surgery for this as my lungs continue now to fill up every three weeks. Hopefully, the surgery can prevent it.        

      

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

                                              

Elephantiasis nostras verrucosa     Lymphomatoid Papulosis        Hyperkeratosis, Papillomatosis

11. Chronic localized inflammations.

                    

12. Angiosarcoma, a cancer of the soft tissues

     

Cancers – New research is indicating that those of us with lonh standing lymphedema run a 1 in 10 risk factor for these cancers

13. Lymphangiosarcoma which is a rapidly progressive, non curable cancer of long term lymphedema  patients.  Almost always fatal within six months of diagnosis

14. Lymphoma, new research indicates a possibility of this with hereditary lymphedema.  I have been diagnosed with two forms of lymphoma.     

                                                                                                               Skin lymphoma

15. Kaposi’s Sarcoma, another cancer that can and does arise from lymphedema.

16. Septic arthritis  - type of arthritis triggered/caused by systemic infections, cancers and more

                        
Septic arthritis in knee                Septic arthritis in hand

Lymphedema Complications

Lymphedema Complications

Nov 2012

Thought it would be good for us to have a review of lymphedema complications.  All to often newly diagnosed lymphedema patients try to push this out of their mind by thinking, "if I ignore this, it will not get worse."

The reality though, is that it does get worse and it comes along with a horrible list of potential life threatening complications.

When I first started Lymphedema People just 3 ½ years ago, there was basically a short list of complications associated with lymphedema. As time has continued and studies have bee completed and as there has been better follow up on lymphedema patients, the list of complications has expanded.

Furthermore, there has been more thorough documentation of the complications face by those of us with long term lymphedema. Usually, these complications are a result of our LE not being treated properly or infact treated at all.

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 Thrombophlebitis

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.

11. Chronic localized inflammations.

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 improperly treated lymphedema. Typically occuring in stage three or four; quite rare in stage two.

14. Skin complications possible in stages 3 and 4 include papillomatosis; placques including “cobblestone” appearing placque; dermatofibroma;Skin Tags; Warts and Verrucas; Mycetoma skin fungus; dermatitis and many lymphedema patients report increased problems withpsoriasis; 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 lymphedema patients are having total knee replacement, total hip replacement, ortotal 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

LONG TERM EFFECTS

There are numerous side effects and long term affects you may experience with lymphedema. Some of these include fatigue, weight gain, pain (sometimes to the extreme), depression, continued swelling of the limbs or abdomen. Some have experienced cardio cavity and pleural edema. Lymphedema can also cause fibrosis. This is where the limb becomes very hard and can become nonresponsive to available treatment options. With extensive fibrosis also comes heightened risks of blood clots in the affected areas.

Lymphedema also cause localized immunodeficiency problems. It also may be suspect in long term immunity problems, especially in very long term primary lymphedema patients. This may be a controversial statement, but I have known of primary lymphedema patients who's immune system seems to have collapsed from unknown reasons. In my personal situation, mine did just that with the result I acquired two different lymphomas. Hopefully, research will be done in this area.

Lymphangiosarcoma is another possible complication of lymphedema. While many LE'ers worry about contracting this, it is extremely rare. Risk factors are extreme fibrosis, radiation on fibrotic areas and continued infections.

Read More:

Complications of Lymphedema

Angiosarcoma in Chronic Lymphedema

Angiosarcoma in Chronic Lymphedema

(Stewart-Treves Syndrome

To the Editor:

Angiosarcoma is a malignant endothelial tumor that can
form in any part of the body, including the skin. It is known as hemangiosarcoma or lymphangiosarcoma, depending on whether it derives from the endothelium of the blood vessels or the lymph vessels, respectively.

It was first described in 1948 by Stewart and Treves in a
series of 6 cases of lymphangiosarcoma after chronic postmastectomy lymphedema; since then, more than 400 cases have been reported of angiosarcoma associated with chronic lymphedema at different sites.

We report the case of a patient with angiosarcoma of
the right arm, associated with chronic lymphedema due to non-Hodgkin lymphoma.

The only relevant history reported by the 84-year-old
woman was a nodule in the lower right cervical region;
results of a fine-needle aspiration biopsy of the nodule were negative for malignancy. Because of the growth of the nodule, a new fine-needle aspiration procedure was performed a year later and cytology results indicated suspected lymphoma; resection and biopsy were performed and a diagnosis of non-Hodgkin large B cell (CD20) lymphoma was established.

Computed tomography (CT) revealed several bilateral
enlarged axillary lymph nodes; the largest of these, measuring 2.5-3 cm, was on the right side and in contact with the rib. The CT scan also revealed multiple enlarged hilar, mediastinal, para-aortic, and retroesophageal lymph nodes, and a 4.3-cm solid mass in the anterior segment of the right upper lobe of the lung.

SEE FULL TEXT WITH DIAGNOSTIC IMAGES:

ELSEVIER

Also:

Lymphangiosarcoma

Stewart Treves Syndrome

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

.

Lymphangiosarcoma referred to as angiosarcoma or Stewart Treves Syndrome is a possible complication

of long term (chronic) lymphedema. It has always been reported as rare, but ironically in the groups I participate in there

have been several members over the last couple years that have come down with it.

Historically, it was though that this mostly effected breast cancer survivors, but now is being recognized as something

that is possible for all chronic LE patients. Indeed, every one of the members who got it were not breast cancer patients.

A couple had other types of cancer and another two were primary lymphedema.

Also, it needs to be mentioned that in every case our members had bruises that didn't heal. When they were biopsied, it

turned out to be lymphangiosarcoma. it is critical that we keep check on our limbs that are effected and don't assume

any change is simply a discoloration cause by the LE.

In my own case, I had a small perfectly round spot on the calf of my left leg. It continued to grow until it reached

the size of a quarter. For me, it turned out to be mixed b-cell lymphoma.

So pay attention and report to your doctor when these spots arise.

Pat

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

Rev Med Liege. 2009 Jul-Aug

Gonne E, Collignon J, Kurth W, Thiry A, Henry F, Jerusalem G, Gennigens C.

Université de Liège, Belgique.

The Stewart-Treves Syndrome is defined as an angiosarcoma (very aggressive malignant tumor originating from endothelial cells) appearing in a specific clinical setting. This tumor develops in patients suffering from chronic lymphedema of the upper limb following mastectomy and axillary lymph node dissection for breast cancer. The diagnosis relies on medical history, clinical examination and a histological assesment (biopsy or resection). This syndrome represents a rare clinical entity. Unfortunately, the prognosis is poor. A large surgical resection is the treatment of choice if the patient is a candidate for a surgical resection with a curative intent Radiotherapy is sometimes used as a palliative local treatment. Chemotherapy is only used in more advanced cases, not curable by surgery alone.

Pub Med

For further information, please refer to our pages:

LYMPHANGIOSARCOMA

and

Stewart Treves Syndrome