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Diagnosed with angiosarcoma

PostPosted: Thu Apr 16, 2009 6:33 pm
by ma1290
Hi everyone,

I have had lymphedema in my right leg. Recently, I have been diagnosed with a lymphedema related cancer.

Two months ago, I noticed a purple spot on the bottom of my swollen foot. After it was biopsied, doctors informed me that I had several tumors called "retiform hemangioendotheliomas." These tumors were a form of a low grade cancer. To prevent them from being dangerous to my health down the road, I had my right leg amputated below the knee on March 24.

During the surgery, doctors found another tumor near the incision. This one turned out to be an angiosarcoma, which is a much more dangerous and aggressive form of cancer. A subsequent MRI showed that I had another tumor above my knee. On March 26, I had a second amputation performed above my knee to get rid of the angiosarcomas.

I am going to be beginning adjuvant chemotherapy as soon as my stump has healed enough. I understand that I am in a very serious condition and am working with the Mayo Clinic with a specialist in soft tissue sarcomas.

Has anyone, in this lymphedema community, known someone with cancer caused by lymphedema? Does anyone know about angiosarcoma treatment?

Re: Diagnosed with angiosarcoma

PostPosted: Sun Apr 19, 2009 10:57 am
by patoco
Hi Adam

I'm just not able to be around much anymore and missed this post.

My heart and prayers go out for you and I am so saddened to hear about this.

There is a tremendous amount of evidence that thoseof us with lymphedema, particularly those who have had it for years are much more susceptible to cancers. Specifically, lymphangiosarcoma and lymphomas.

I have had to deal with a couple types of lymphomas since 1995, but have so far avoided angiosarcoma.

Please, please read over my page on this carefully and you may want to screen print it and take it to you doctor.


Stewart Treves Syndrome

Angiosarcoma ... arcoma.htm

I really wished you lived down here as I have the most incredible, bright and caring oncologist, Dr. Szabo here in Gwinnett county, Georgia.

Please let me know how you are and if you want to mail me personally use

Pat O'Connor

Re: Diagnosed with angiosarcoma

PostPosted: Mon Apr 20, 2009 5:33 am
by tkincheloe
Hi Adam,

I was alerted to your post by several friends, including Pat O'Connor. I, too, have not been active for a number of reasons but more lately due to the process of setting up my own private lymphedema treatment clinic.

I'm so sorry you have had to go through so much, especially with the amputations. In addition to being a lymphedema therapist and occupational therapist, I'm also a leg amputee. Mine is also above the knee (transfemoral). I lost my leg due to a congenital defect, not cancer. My first amputation below the knee was at age 2. The second, above the knee, was at age 10. I recently went through a third amputation (same leg) 3 years ago due to recurrent infections due to bone degeneration and calcifications. So I can identify, at least in part, to what you're going through. If you have any questions or concerns with being an amputee, feel free to call on me.

Once thing I am concerned about is the extensiveness of your lymphedema on the involved (amputation) side. Does the LE involve the thigh and hip? I am curious as to how this will affect wearing a prosthesis, that is if you plan to wear one.

My prayers are with you, Adam, in the hopes that the amputations have terminated any future episodes of angiosarcomas, or any other form of cancer.

Feel free to contact me personally if I can be of any help or support.

Tom Kincheloe, OTR/L, CLT
Occupational Therapist/Certified Lymphedema Therapist