My Mom was diagnosed with Lymphedema, how serious can this condition be?

Question

She's 66 and had breast cancer almost 15 years ago. I heard it is unusual that Lymphedema develops so long after her surgery and cancer treatments. It is in her right hand and is working it's way up her arm. Her physical therapist (she just had her first appt.) said that it is stage 2. Will her hand and arm ever look normal again? I feel so bad for her. Her Dr. also ordered an x-ray of her lungs. Could tumors cause lymphedema to develop? Also, it was very sudden. We were watching a movie and 2 hrs. later, her hand was 3 times the size of the other! She was also surprised at how they didn't tell her much about lymphedema when she was being treated for cancer. With all the exposure that breast cancer gets, they should really tell the public more about lymphedema!

Answer 1

Your mom's arm should definetely come down in size, but might remain slightly larger than the other...barely noticable in most cases. Your mom will be undergoing treatment for her lymphedema for probably the next month (as an average) for stage II lymphedema. Depending on which scale one uses, this is a moderate form of lymphedema...usually with a difference of 3-5 cm in girth between the affected and the unaffected extremity. Your mom will now begin a lifelong managment of the condition. One cannot cure lymphedema, but can manage it by following the advice of her therapist and wearing of a compression garment on a daily basis (the therapist will tell her when it is appropriate to be fitted for the garment). Management of lymphedema is important in order to prevent skin break-down and lymphangionitis...otherwise known as cellulitis (a potentially serious infection).

It is unfortunate that your mom did not receive the proper education after her surgery...although it was 15 years ago and even today, many physicians are unsure of what to do with people who have lymphedema. Newer surgical techniques are being done to minimize the amount of lymphnodes removed (such as centinal node biopsy). Our facility has recently implimented a relationship with the cancer surgeons to either have the patient attend a class or an assessment about lymphedema if it is felt they might be at risk for developing it.

And no, the presense of lymphedema does not necessarily imply the presence of active cancer....but it is god she followed up with her doctor to rule that out.

Best wishes.

Answer 2

Hi! I'm Tina, owner of Lymphland.com and yahoo groups Lymphland support group and I'm also an ask the expert panelist on lymphedema.

It is a little unusual that it has developed this far after surgery but not impossible. there have been cases of lymphedema 20 some years after surgery. I'm glad she is in therapy, that's the gold standard treatment. Yes her arm will come down in size and could be 100% normal again. Lymphedema can develop from tumors yes, it also can develop from some trigger, did she do alot of repetitive motions before the swelling? any injury, bite, bump or trauma? It just takes 1 little thing and it can bring lymphedema up in full force.

She's not alone, alot of doctors are ignorant about lymphedema, they blow patients off for years saying to elevate the limb or put them on diuretics which is not good for lymphedema because the meds push out the water part of the fluid but leave the plasma, proteins, and debris which in turn can harden and cause fibrosis. We are really trying to educate doctors, it's hard when they really don't want to learn.

How is her therapist treating her? How long, what method, and is she being wrapped? There are many different kinds of therapy such as Leduc, Vodder, Chikly, and others, and there are different therapists that believe in different ways of treating too, some will use a pump, some wrap, and some don't believe in any wraps until therapy is done then you graduate with a sleeve, it's imperative she gets the right treatment so please let me know on that.

The condition can be very serious if she gets an infection. Cellulitis is a form of staph or strep infection lymphedema patients dread, it can become deadly if not treated properly. A simple cut is not simple to us, it must be cleaned and covered immediately and watched for signs of infection. We have to watch burns, bites, trauma of any kind to the limb.

your therapist should teach your mom do's and don'ts, proper skin care, possibly skin brushing, how to do MLD self bodywork, and how to wrap, then order her a sleeve when treatment is done. Make sure the therapist is a certified lymphedema therapist.

I invite you and your mom to join our support group, http://health.groups.yahoo.com/group/lymphland/ and to check out http://www.lymphland.com my website. I will be in the group chatroom tomorrow night at 10PM Eastern time, http://www.lymphland.com/chatnguestbook.html if you or your mom wants to stop in and talk more personally.

Answer 3

Lymphedema is a well know consequence of removing lymph nodes after breast surgery. Today, surgeons are less inclined to remove them just for the sake of doing so like in the old days. It is unlikely that she would suddenly develop this after 15 years, so your healthcare provider should be looking for other causes, ie return of cancer, infection, or blood clots. As for not receiving information, doctors are notorious for not communicating fully with their patients. That is why I see a nurse practitioner for my health care needs.

Answer 4

Lymphedema occurs when lymphatic fluid builds up in the soft tissues of your body, usually in an arm or leg. The lymphatic system consists of lymph vessels and lymph nodes that run through your body. Lymph vessels collect a fluid that is made up of protein, water, fats, and wastes from the cells of the body. Lymph vessels carry this fluid to your lymph nodes. Lymph nodes filter waste materials and foreign products, and then return the fluid to your blood. If your vessels or nodes become damaged or are missing, the lymph fluid cannot move freely through the system. The fluids can then build up and cause swelling in the affected arms or legs.

There are two types of lymphedema:

• Inherited lymphedema, or primary lymphedema, in which you are born lacking lymph vessels and nodes. The swelling usually appears during your adolescence and affects your foot or calf. A rare form of primary lymphedema develops in infancy and is called Milroy’s disease
• Acquired lymphedema or secondary lymphedema, in which an injury to your lymphatic system causes lymphedema. It is much more common than primary lymphedema

Some people develop chronic lymphedema, which can last for the rest of your life. Chronic lymphedema can be a difficult form of lymphedema to treat. Swollen limbs become vulnerable to infection. Any kind of injury to the skin, such as a cut, scratch, insect bite, or even athlete’s foot between your toes can cause a severe infection, which physicians call lymphangitis. Lymphangitis affects the connective tissue under your skin. Repeated infections can cause scarring that makes the tissue vulnerable to more swelling and infection. This leads to the tissue hardening, called fibrosis, which is characteristic of advanced chronic lymphedema.
The most common causes of secondary lymphedema are surgery or radiation treatment for certain types of cancer, such as breast and testicular cancers. Other causes of lymphedema include surgery on the blood vessels in your limbs, other surgical procedures like liposuction, and burns.
If you are at risk for developing lymphedema, you can act to prevent it. If you have mild lymphedema, you can act to keep the condition from worsening. You can take the following precautions to prevent or minimize symptoms:

• Clean your affected limb regularly. Remember to dry it thoroughly and apply lotion
• Wear gloves while gardening and cooking
• Shave with an electric razor
• Don't go barefoot
• Do not cross your legs when you sit
• Do not carry a handbag with your affected arm

In addition, if you are at risk for lymphedema, avoid having injections and blood pressure readings performed on your affected limb. You can also wear a special bracelet or necklace to notify medical personnel of your risk for lymphedema and the risk for complications, such as infection.

Physicians have not agreed about how to best treat chronic lymphedema. Some people have benefited from manual lymphatic drainage. This treatment uses massage to stimulate your weakened lymphatic system. Other treatment methods include special exercises that you can do while wearing compression stockings or bandages, and the use of external pumps to aid the movement of fluid through your body. A treatment that combines these treatments with lifestyle changes is called complex decongestive therapy.

Medication cannot cure lymphedema. However, your physician may prescribe medications to treat associated conditions. For example, antibiotics play an important role in combating infections that can worsen lymphedema.

Your physician may recommend surgery to remove excess tissue if your limb becomes so large and heavy that it interferes with your ability to move it.

Treating your lymphedema requires your participation. Because lymphedema can be very painful, you may benefit from individual counseling. You can also join support groups that provide practical advice as well as social and emotional support.