Primary Lymphedema and Cancer

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Primary Lymphedema and Cancer

Postby patoco » Mon Jun 19, 2006 1:50 am

A question was posted by one of our members on Silk's wonderful Lymphedema Chat board asking about the risk of cancer as a result of lymphedema. Wanted to post my reply here as well.

Original Post 09/24/2004

First, for those who haven't visited the chat room it is at: ... atsnew.msn


Our Home Page: Lymphedema People


Hi Roni and Silk

The best answer rests in whether or not your have primary or secondary lymphedema.

In secondary lymphedema, there is a remote possibility of what is called lymphangiosarcoma (Stewart-Treves Syndrome). It quite rare but is a possibility. This is an agressive and almost untreatable type of cancer of the soft tissues.

In longstanding primary lymphedema you can also get this. The main ingrediants for it appear to be (1) long standing lymphedema with extreme fibrosis (2) chronic infection (3) radiation to the lymphedema limb.

However, with primary (hereditary) lymphedema there is now evidence coming out that indicates there are other cancer possibilities. Of the two lymphedema genes (another is suspected but not identified) - most is caused by a mutation of the VEGFC gene. This stands for vascular endothelial growth factor. There are about 5 genes in this family and almost all of our entire vascular system is tied in with it.

There is mounting evidence that those of us with hereditary lymphedema are genetically predisposed to the possibility of lymphoma.

As an example, the researchers have identified mutated endothelial base cells in the blood of lymphoma patients. Thus the implication that one cause of lymphoma may be a mutated VEGF gene. Also, there are examples of lymphedema family members who do not have "active" lymphedema coming down with lymphoma.

Consider this family history:

I have hereditary lymphedema that presents in all four limbs. A sister has is presenting in here left leg. Our brother (the champion athlete, jock - never sick a day in his life) had serious non-Hodgkins lymphoma in his twenties.

Thus far I have been diagnosed with two types of lymphoma. In 1995, Mixed B-cell lymphoma and in 2000 with lymphopasmacytic lymphoma. Interesting that in one family with lymphedema - two brother has had lymphomas.

A cousin of mine has active lymphedema in his left leg. His brother (the jock again) had lymphoma. Anotehr example of a person with lymphedema having a brother also that had lymphoma.

Research is new in this area and we owe a big thanks to a medical professor in Spain for being the first to publish report regarding. I have corresponded with him.

Hope this can answer some questions - not so good news for we primary lymphedemers But we need to know this information.

Hugs to you both!

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