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Posts: 3
Joined: Jul 2005

I would like to connect with anyone who has been diagnosed with DFSP. I was diagnosed and treated in 11/04. Anyone with any insight into this type of cancer would be helpful. Thank you.

Posts: 1560
Joined: May 2006


You may want to do a search of the website by typing in DFSP in the search bar at the top of the page. If you find a match, you can contact the individual through the internal CSN email system.

You may also want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists can assist you with questions you may have. They can be reached 24 hours a day at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

Take care and be well,

CSN Dana

Posts: 1
Joined: Sep 2005

I have been battling a dfsp on my head for over twenty years. I am presently in the process of having surgery. It is important to follow up every 6 months to see if it recurred. Where was yours located? what treatment did you have?

Posts: 3
Joined: Jul 2005

It was located on my shoulder near my clavacle. I had a wide area excission to 3mm margins which was clear. I have had ct scans every three months since with no reoccurance. My biggest fear is a reoccurance.

Posts: 2
Joined: Sep 2010

Hi, I am the mother of a 15 yr old girl just diagnosed with DFSP last week. It is located in a similar area that your was. We were told it was a cyst and found out after the fact that it was DFSP. I realize it has been a few years for you and I hope you have not had a re-occurance. I would appreciate any information you would be willing to share with me since your surgery (did you have mohs?) in hopes of helping my daughter cope with this. We are scheduled to see a Dermatologist who specialized in this next week. It is all so new for us.

Posts: 1
Joined: Dec 2016

My husband was recently diagnosed with DFSP, soft tissue sarcoma. We are trying to determine which Cancer Hospital to go to for a 2nd opinion. Anyone out there with helpful information? Of the top 3:

MD Anderson

Sloan Kittering

Mayo Clinic

Pros, Cons?


Thank you 

abrub's picture
Posts: 1842
Joined: Mar 2010

Tammy, you've posted on a very old post; people on this might not be here any longer.

As to your hospitals, you want one that has specialists in his particular cancer.  My rare cancer is appendix cancer.  I travel to Sloan Kettering, but there are also specialists for my cancer at MDA.  However, as far as I know, there are no experts for appendix cancer at Mayo.  You need to find the right experts.  Good luck.  (And try creating a new thread; these very old ones can be disturbing when they re-emerge.


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