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DFSP resource page

I have just created a website for the very rare cancer I have. Myself and my support group online want to get the word out about it. No one has heard of it. It is called DFSP: dermatofibrosarcoma protuberans. It makes up less than 1% of all sarcomas. It is so rare that not even the American Cancer Society has info on it. That is a scary thought from where I sit as a patient. There are approx. 1-4 cases diagnosed per million people worldwide each year. Early next year I will have Radiation treatments. I have also undergone 3 operations as well. Here is a link to the new site.  DFSP resource page
My next blog will be about Mohs surgery. It is needlessly cruel.                      

Comments

  1. Hi,

    I have DFSP and was treated using MOHS surgery in January 2010. Although the operation was hard for me it was better option for me. I don't think you can say it is cruel. The problem with MOHS is that it was originally designed to be used for small lesions in areas where minimum tissue could be removed. Often basal cell carcinoma etc. It is usually done on an out patient basis and the hospital is not set up to give an anesthetic. As you know DFSP tend to be quite large lesions. If I had not had MOHS I would have lost lost most of the tissue on my right shoulder and perhaps the movement of my right arm. So although it was not easy to go through I am now delighted.

    I was not told about MOHS by my surgeon and I had to find out it via the internet. I had to travel to the other side of France where I live to have the operation done. I hope that you manage to find what type of surgery is best for you and and most importantly that they manage to give you the all clear after the operation. I have had two scans and touch wood I am still clear and don't regret the MOHS at all!

    ReplyDelete

  2. Hi, I respect you opinion very much. I know for me I was not able to handle it without sedation. I too have the all clear. I wish you the best.

    ReplyDelete

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