Does anyone know of any support groups of vascualr tumors specifically epithelioid hemangioendothelioma?

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I am looking for both online and traditional support groups dealing with this particular topic. I am looking to do my dissertation on this particular topic. Any help would be appreciated.
There are some message boards and sites specific to the disease:

H.E.A.R.D Support
http://www.heardsupport.org/

Epithelioid Hemangioendothelioma
http://www.cancersociety.com/forum/viewtopics.cfm?Forum=36

Rare Cancer Hemangioendothelioma
http://adult.rare-cancer.org/hemangioendothelioma.html

Survivor Support Story: Epithelioid Hamangioendothelioma
http://survivor-support.rare-cancer.org/adult-stories/epithelioid-hemangioendothelioma.html

I've come across the disease while researching Epithelioid Sarcoma. the two share a similar name but are considered different diseases.

And, since you asked for other types of support. Epithelioid Hemangioenothelioma is considered to be a type of soft tissue sarcoma. You can check out the Sarcoma Alliance:
http://www.sarcomaalliance.com/

And, if you are seeking general support you can try Cancer Care:
http://www.cancercare.org/

Best to you.  (+ info)

can anyone tell me about Epithelioid hemangioendothelioma (EHE) of liver..is there any cure for this..?

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Please define "epithelioid melanocytes with large pleomorphic nuclei and prominent nucleoli"?

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I was just provided this pathology report on a mole taken from my skin and don't see the doctor for a week. I'm aware it's probably treatable, just wanted some info prior to going to my doc.
Epithelioid-cell blue nevus is an unusual cytologic variant of blue nevus that has been recently described mostly in patients with Carney complex, although the lesion may also appear in patients with no evidence of Carney complex. This variant of blue nevus is composed of melanin laden large polygonal epithelioid melanocytes situated within the dermis. The neoplastic cells show no maturation with progressive descent and, in contrast with the usual stromal changes in blue nevi, epithelioid-cell blue nevus exhibits no dermal fibrosis. This report describes a congenital giant melanocytic nevus with pigmented epithelioid cells located on the back of a 2-year-old male. The lesion was present at birth and the patient had no evidence of Carney complex. Histopathologically, the lesion consisted of a large and entirely intradermal melanocytic nevus composed of heavily pigmented epithelioid melanocytes involving the full-thickness of dermis, but extending also to the subcutaneous fat and underlying soft tissues. Immunohistochemically, epithelioid neoplastic melanocytes expressed immunoreactivity for S-100 protein, HMB-45, Melan-A, NK1C3, and microphthalmia transcription factor (MiTF) antibodies. MIB-1 cellular proliferation marker was expressed in the nuclei of only a few scattered epithelioid melanocytes. This report demonstrates that epithelioid-cell blue nevus is a distinctive histopathologic variant of blue nevus that may also appear as a giant congenital melanocytic nevus.
pleomorphic nuclei: pre cancerous cells  (+ info)

is there any treatment for epitheloid hemangioendothelioma?

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please give me the answer as soon as possible..
its in both lobes of my liver..
You did not mention what type. Ask your doctor.  (+ info)

Cancerous tumor in thumb, what are the treatment options? Holistic healing, positive thinking etc.?

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am 28 yo, and had a tumor taken out of my thumb recently. The orthoepeadic surgeon says that the results from the pathologist says its a malignant tumor (Epithelioid Sarcoma) and I need to get my thumb amputated. I intend to get a second opinion on that.

But am wondering if they indeed amputate the thumb, how is life without a thumb? Has anyone had that experience? They also mentioned that they could replace the thumb with a toe from my foot, but I am not very keen on that as I don't want surgery in two places.

Does anyone know of any sucessful treatment for cancerous tumor in the thumb without amputation? I am open to holistic healing, and alternative therapies. I am also considering ignoring the whole thing and just doing positive thinking and meditation. Has anyone able to cure themselves or their relative with just positive thinking and mediation?

Thanks in advance fro everyone who answers!

Additional details: I have had this tumorous growth on my thumb for about 2 years. It never caused any pain. I didn't go to the doctor thinking it wasn' that important.
I don't know anyone without a thumb, but I have several acquaintances that have lost or damaged fingers. The key to doing well is to carefully and rigorously follow the physical therapy plan you are given. It is crucial to keep the tendons and muscles limber while they heal from this.

As for the toe implant, I imagine that's a decision you can make later. You might want to talk to some people (yahoo is a good place to start, but I will bet there's a discussion group that discusses just this topic on line somewhere) who made the decision both yes and no to see what their thoughts are down the road.

Talk to your doctors about how your age influences their recommendation. Is your hand or foot likely to suffer down the road when you have so very many years left to use them?

You are not alone in thinking that this tumor was nothing - its often diagnosed late because that's what most people think. But your experience is one of the reasons why people should see their doctor when something unusual is going on with their body that lasts for more than a few weeks.

Best of luck to you as you decide what the right course of treatment is for you.  (+ info)

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