My DFSP Journey, Eight Years Later

This picture may be hard to look at, but I’m glad I had it taken.  Eight years ago I had a rollercoaster ride that I didn’t want to be on.

I had had a lump growing in my left arm for a long time.  As a matter of fact, it started out very small, probably around my late teens.  By the time I had it removed at age 32 it had grown to the size of an egg.

I had mentioned it to doctors before and they shrugged it off as a cyst.  At the end of June 2007, I trusted my body.  I knew something wasn’t right.  I visited  different doctor and for the specific reason of getting this thing checked out.

The doctor took xrays.  He then sent me to a surgeon.  When I visited the surgeon, he sent me for an MRI and a CT scan.  All of this took place over the period of two weeks.

They didn’t tell me anything.  My surgeon told me it definitely has to come out.  He wanted to schedule surgery soon.  I wasn’t looking forward to surgery and I asked him if I could think about it.  I went back to work the same day he told me I needed surgery.  They called me at work and i asked if I could wait until November, because I’d have vacation time again.

 They told me no it can’t wait.  It needs to come out NOW.  I broke down and agreed to it.  They were scaring me!  They scheduled my surgery for July 2.  They weren’t kidding about getting it out quickly.

 When July 2 arrived, I was scared and nervous.  My wife, mother and sister were there with me.  I remember getting the meds to knock me out, I even remember going into the operating room.  When I awoke it was all over.  However, the whites of my eyes were filled with blood.  They said I had a bad coughing fit when they took the tube out of my throat.

 I was sent home the same day.  I think my wife, mom and sis thought I might go on to glory on the way home. I felt pretty sick and apparently I was very pale.  That night I had a fever that went up to about 102. I was blessed to not have any pain whatsoever.  They sent me home with pain pills but I didn’t have to use one of them.

I had to wait two weeks before seeing my surgeon again.  They were going to take staples out and tell me about the results of the tests that were done on the “lump”.  I was working that day and took the last half of the day off to go to the doctor.  I sat in his office on his table and waited for him to come in.

I think I was more nervous than I was before the surgery.  I had a good idea of what he was going to tell me, but you still never really expect it to hear it.

He came in and didn’t waste a lot of time.  He told me that the “lump” was indeed a malignant tumor and it was very rare.  It was Dermatofibrosarcoma Protuberans or DFSP for short.  He said he couldn’t be sure that my margins were clear and he said I needed another surgery to make sure.  That surgery would be done in Birmingham.  Instead I asked for a second opinion.  He sent me to the doctor in Birmingham who would actually be doing the surgery if I needed it.

In August I went to see the surgeon in Birmingham and he said he would consider me 85% cured.  He said, I could go for another surgery to make sure they had everything they could get, or I could keep a check on it.  I decided on the latter.  I was to go to the doctor every 3 months and have him check the site and other parts of my body for new lumps.  Once yearly I was to have a CT scan.  I was able to do that for 1 year before I lost my job and insurance.

 The doctor seemed to be worried it would go to my lungs.  Since 2008 I haven’t had health insurance or any check ups.  I do keep an eye on things myself.  They say the biggest chance of recurrence is within 5 years and its usually in the area where the old tumor was removed.  I’m past the 5 year mark.  I do have a “lump” in my right arm now that I’m keeping an eye on.  It’s been there for over a year now.  I could use your prayers on that.

 Now with my stepdad going through his battle with cancer.  I’m reminded of my own journey.  I was blessed to not have to have chemo or radiation.  DFSP doesn’t usually respond to either of those.  I see what others who have cancer are going through and I feel for them.  Having had to hear the words from the doctor myself, I know what kind of terror it strikes in your heart.  I pray.  I pray for those who are battling.  I pray for a cure to all cancers.  I pray that one day no one has to lose anyone to it again.

 Now when I look up DFSP and I see the pictures.  I feel even more blessed.  DFSP can be very disfiguring.  It affects 1-5 per million people, so it’s extremely rare.  If you have any lumps, weird moles, or anything else you don’t think is quite right. Ask a doctor! If you don’t feel satisfied with that answer, ask another doctor. Second opinions don’t hurt!

 I’ll leave you with one very special request.  Please say a prayer for my stepdad.  He’s a great dad and needs our prayers.  I appreciate your support for him.