Lymphedema for the Newly Diagnosed

    Lymphedema For the Newly Diagnosed

The immediate time period after being diagnosed with lymphedema can be a confusing and frightening time. In one sense, there may be relief…finally there is a name to this awful “thing” that has attacked your body. But there is also a bewildering amount of emotions, fear…questions of what do I do now and where do I turn to begin dealing with this condition.

I wanted to share a few ideas that hopefully can make this period a little smoother and help give a bit of direction.

  Acceptance and Denial

You may go through a time when you try to say to yourself that this swelling will just go away by itself or that you don’t really have to do anything about it and that it may not matter much anyway.

But as hard as this is to say, the reality is that if you have lymphedema, it just isn’t going to go away by itself. It isn’t a medical condition that you can just ignore and hope for the best. While there is no present cure, there is treatment available that can help manage it and help you get back on track with your life.

It is so very important to understand this and to get into a treatment program as soon as you can.

Point to Ponder: Acceptance doesn’t mean surrender or giving up to lymphedema.

       Education – Being Proactive

As you may have already experienced, there is a great deal of ignorance in the medical profession about lymphedema. Sometimes, it takes years for a diagnosis and after even that is achieved, most doctors really don’t know what to do next.

That is why it is critical that we as lymphedema patients take the initiative and proactively educate ourselves on every aspect on the condition. You will want to find out what lymphedema is, what it does, what to expect from it, how to have the correct treatment and perhaps most important, how to have a full and meaningful life even with it.

You will also want to educate yourself so you will not fooled by or damaged by all the very bad misinformation out there regarding lymphedema and the lymph system. I’ve noticed that in the last couple years, the lymph system bas become a buzzword in the cyberworld and there a all too many uneducated and badly informed people trying to sell pills, potions and promises of quick cures. Unfortunately, often these supposed cures cause more damage and can even dangerous to your life.

The good thing is that there are many excellent websites that you can go to and find solid, credible, life giving information. In addition to Lymphedema People, there is The Lymphatic Research Foundation, theNational Lymphedema Network, Circle of Hope Lymphedema Foundation, Lymphovenous Canada, Lymphoedema Association of Australia and UKLymph to mention only a few.

Point to ponder: Knowledge is Empowerment. Remember the life you save, may be your own.

     Compliance with Your Treatment Program

Once you have finally gotten that diagnosis, it is equally important that you get referral to a trained and certified (Lymphedema Association of North America standards) lymphedema therapist.

Lymphedema therapist are among our best friends and they actually do more on a day to day basis to help us then doctors actually do.

But, sadly as so many therapist will tell you, the number one reason their patients don’t get better or even experience a worsening of their lymphedema is the failure of the patient to be compliant with the proscribed treatment program.

We all understand the fatigue, the pain and the depression that can come with lymphedema. But, my friend, the truth is, is that it is up to you to work with your therapist – as a team to insured you get the most out of your treatment.

Point to ponder: It is your life and your responsibility to do all that you can to help yourself.

      Anger, Bitterness and Self pity

After that diagnosis you will go through a period of intense emotional conflict. You may swing from anger, feel bitter that this has happened to you and start feeling sorry for yourself.

Please understand, this is totally normal and yes, you do have a right to experience those feelings. Actually, if you didn’t, I would really be concerned for you.

But the key is not to stop with either of those emotions. They are to me, the triple malignancies of the spirit. They have destroyed more lives throughout history then all the medical conditions combined.

Work your way through them…keep pressing forward knowing that this terrible time of emotional struggle ends.

The following is something I do each morning and it really has made a difference in my life.

Point to Ponder: Every morning, before you start your day, ask God to help you be a source of joy, hope and encouragement to another person

      Don’t Stop Living Life

When you are first diagnosed, it is easy to be overwhelmed. You feel like your whole life is over with and you will never be able to do anything you love doing again.

Please, believe me when I say, that is simply not true. Lymphedema isn’t about giving up and quitting life, it is about adaptation. You may need to change how you do things, figure out new and less strenuous ways of working and in recreation. But it doesn’t eman to have to stop everything you are used to enjoying.

Besides, if that were true, why even be alive??

If you do find there may be one particular activity you can not do anymore, find another to replace it with.

It is impossible for me to spend all day (lol..even a couple hours) working in my garden. But, I am able to sit at a computer and reach out to help others with lymphedema.

There just are too many wonderful activities, hobbies and interests to pursue to crawl into a cave and hide.

Point to Ponder: If one dream is taken away, God will send another, even more special to replace it.

In conclusion, yes, it can be devestating to be diagnosed with and stricken by lymphedema. But, I honestly do believe, it ultimately comes down to how we choose to handle it. Do we choose to surrender or do we choose to have a meaningful and joyous life despite lymphedema.

LIFE IS A CELEBRATION OF THAT WHICH WE CAN DO, NOT A REQUIEM FOR THAT WE CAN NOT DO.

Pat

Welcome to the NEW Ovarian Cancer blog

Welcome to the NEW Ovarian Cancer blog

We needed a new blog so that we can restart and move forward on providing information and help to ovarian cancer patients, survivors, caretakers and families

Someone might ask, why would a man start a blog on ovarian cancer?

The answer really is quite simple.  I had an aunt that past away from it.   By the time it was detected, it was beyond treatment and had spread throughout her body.  There was nothing that the doctors were able to do.  Statistics indicate that ovarian cancer is now the fourth major cause of death from cancer for women.  Clearly, not enough attention is being focused on this disease.

The females in my family also have a horrible ratio of ovarian problems including polycystic ovarian syndrome, my own lovely daughter included.

So it is a very relevant and important topic to me.

It is also important because of a complication that is becoming more and more prevelant among ovarian cancer survivors and that is called lymphedema.  Lymphedema is a condition of leg swelling which results from lymph node removal, damage to the lymph system from radiation or from chemotherapy. I will have a complete page of information on this complication which will include how to recognize it, treatment and outcome. 

I am a thirteen year survivor of a b-cell lymphoma and a fifty-six year hereditary lymphedema patient.

The information I want to provide involves symptoms, diagnoses, treatments, complications and I will include peer reviewed  clinical studies relating to ovarian cancer.

Leg Swelling and Ovarian Cancer

Arm and Leg Swelling After Cancer 

With the advent of better and more effective cancer treatments, the survival rate for all cancers has risen dramatically. With this progress, a new and often misunderstood and misdiagnosed complication has arisen. 

Many cancer survivors , having overcome cancer, find themselves with sudden and often unexplained swelling, usually of the arms or of the legs. 

This swelling occurs because of one of several factors. 

First, the swelling begins after lymph nodes have been removed for cancer biopsies.

Second, the swelling may start as a result of radiation damage to either the lymph nodes and/or the lymph system. 

Due to either the removal of lymph nodes or damage to the lymph system, your body is no longer able to rid itself of excess fluids. The fluids collect in the limbs effected and swelling beings. 

This swelling is called lymphedema. The swelling that occurs is permanent, and while it is not curable it is treatable. 

Permanent Leg Swelling

****In the situation of any permanent leg swelling whether the cause is known or unknown, the diagnoses oflymphedema must be considered**** 

There are several groups of people who experience leg swelling from known causes, but it doesn’t go away or unknown causes where the swelling can actually get worse as time goes by. 

Group One 

This group includes those who have had the injuries, infections, insect bites, trauma to the leg, surgeries or reaction to a medication. When this swelling does not go away, and becomes permanent it is called secondary lymphedema. 

Group Two 

Another extremely large group that experiences permanent leg swelling are cancer patients, people who are morbidly obese, or those with the condition called lepedema. What causes the swelling to remain permanent is that the lymph system has been so damaged that it can no longer operate normally in removing the body’s waste fluid. In cancer patients this is the result of either removal of the lymph nodes for cancer biopsy, radiation damage to the lymph system, or damage from tumor/cancer surgeries. This is also referred to as secondary lymphedema. 

Group Three 

Group three consists of people who have leg swelling from seemingly unknown reasons. There may be no injury, no cancer, no trauma, but for some reason the leg simply is swollen all the time. 

The swelling may start at birth, it may begin at puberty, or may begin in the 3rd, 4th or even 5th decade of life or sometimes later. This type of leg swelling is called primary lymphedema. It can be caused by a genetic defect, malformation or damage to the lymph system while in the womb or at birth or be part of another birth condition that also effects the lymph system. This is an extremely serious medical condition that must be diagnosed early, and treated quickly so as to avoid painful, debilitating and even life threatening complications. Treatment should NOT include the use of diuretics. 

What is Lymphedema? 

Lymphedema is defined simply as an accumulation of excessive protein rich fluid in the tissues of the leg. The accumulation of fluid causes the permanent swelling caused by a defective lymph system. 

A conservative estimate is that there may be 1-2 million people in the United States with some form of primary lymphedema and two to three million with secondary lymphedema. 

What are the symptoms of Lymphedema?

If you are an at risk person for leg lymphedema there are early warning signs you should be aware of. If you experience any or several of these symptoms, you should immediately make your physician aware of them. 

1.) Unexplained aching, hurting or pain in the leg. 

2.) Experiencing “fleeting lymphedema.” This is where the limb may swell, even slightly, then return to normal. This may be a precursor to full blown leg lymphedema.

3.) Localized swelling of any area. Sometimes lymphedema may start as swelling in one area, for example the foot, or between the ankle and knee. This is an indication of early lymphatic malfunction. 

4.) Any arm inflammation, redness or infection. 

5.) You may experience a feeling of tightness, heaviness or weakness of the leg. 

How is Lymphedema Treated? 

The preferred treatment today is decongestive therapy. The forms of therapy are complete decongestive therapy (CDT) or manual decongestive therapy (MDT), there are variances, but most involve these two type of treatment. It is a form of massage therapy where the leg is very gently massaged to actually move the fluid out of the leg and into an area where the lymph system still functions normally. With these massage treatments, swelling is reduced and then the patient is fitted with a pre-measured custom pressure garment to keep the swelling down and/or is taught to use compression wraps to maintain the leg size. 

What are some of the complications of lymphedema? 

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 immuno-deficient.

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. 

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

11. Chronic localized inflammations.

Can lymphedema be cured? 

No, at the present time there is no cure for lymphedema. But it can be treated and managed and most of the complications can be avoided. Life with lymphedema can still be active and full, with proper treatment, patient education, and patient life style adaptation.