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Frank11

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MELANOMA INTERNATIONAL FOUNDATION
July 14, 2012

I received news within the last six weeks that I have Stage IV melanoma. This has been a most shocking revelation, completely out of the blue, without previous or current other evidence of disease than a tumor on my lung. Such a diagnosis raises innumerable large questions, and, though some of these can be answered by doctors, they are not always there to answer them at the time they arise, not prompt about getting back to patients, and sometimes overwhelming one in a short period of time with information that needs sorting if it is going to be of any use. Besides, in a disease that is as individualized in diagnosis and potential treatment, to what doctor does one go to get the best care? With all these questions and concerns, I have found the one strong and safe refuge through these weeks has been the International Melanoma Foundation, most specifically its forums that have allowed me to interact with and learn from others in my situation who are further along in their journey, and through this and phone and email contact with its most knowledgeable and incredibly available and deeply caring head, Catherine Poole. I dont even want to imagine how much more difficult the road would have been so far without this amazing resource. I cannot praise it and Catherine's guiding hand enough. Just in the past day, I was faced with the stunning news that my cancer may have spread from lung to brain, on the basis of an ambivalent MRI reading. After numerous unsuccessful attempts to contact my oncologist or his office, I turned to MIF and received excellent advice and support from fellow Forum members and Catherine herself that have helped me make good decisions about steps forward and put mind and emotions at ease as I write this, both mine and my wife's. I am so grateful.

The Great!

I've personally experienced the results of this organization in...

Learing about treatment options, gaining hope from others' experience, getting specific answers to questions, calming my fears.

Ways to make it better...

If I had to make changes to this organization, I would...

not make ones that would upset the great work that is now being accomplished. I would make sure that public relations efforts, perhaps especially through melanoma specialists would make this opportunity known to all who suffer from the disease.

More feedback

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

How did you find this group?

A random hunt online

What, if any, change in your life has this group encouraged?

Being more hopeful about the future and being proactive about sharing my questions and concerns and not taking one doctor's opinion with more gravity than it is worth.

MY ROLE:
Client Served & I sought support and advice from staff and other melanoma patients through involvement in the organization's onnline Forum.