DFSP

jconn1564 said:

Daughter with DFSP
Hello, My 15 year old daughter diagnosed with DFSP last week. I would appreciate any information you would be willing to share with me on helping your child cope with this. She had a supposed cyst removed which turned out to be the DSFP. Next week is our first appt. with a Dermatologist/surgeon who specializes in this. This is all so new for us. As much as I am trying to keep this in perspective, my head is spinning right now. Did your son have the MOHS surgery or the wide excision? Now that the physician research is done, that is my next step. Any information you or anyone out there can provide on your experience would be most welcome. I wish the best for your son and your family.

Son with DFSP
My son received his pathology report last week after having a supposed cyst removed in his back that he probably had 10 years (he is 28). It was drained 5 years ago but no pathology performed. He is a bodybuilder and it got really bad. He is going in next week for further surgery to make sure they got it all. He may have another spot on his hip. I am scared to death about this. This site is the most informative I have found yet. I believe they are going to do a modified MOHS. His growth was the size of a golf ball. He hasn't seen an oncologist yet but they are scheduling him. He is very depressed and scared also. I would like to have him sign up to this site but I am not sure he is the frame of mind yet. The doctors appear to have scared him a lot telling him about it traveling to his lungs and that the feelers are so close to his lungs. I am praying that it truly is localized and they can excise all of it. Not having answers at this point is driving me crazy. His doctor told me one step at a time and I am trying to focus on that.

DFSP
I just found out I have dfsp after ther removed a grouth on my left shoulder. I am scheduled to see a specliast at Slown in nyc. Dont know what to expect. Scared stiff.

bobr said:

DFSP
I just found out I have dfsp after ther removed a grouth on my left shoulder. I am scheduled to see a specliast at Slown in nyc. Dont know what to expect. Scared stiff.

DFSP
Hi - welcome to the 'club'
Getting any kind of cancer dx is scary but at least once it is diagnosed you can begin the recovery trip :-)
I was accidentally DX with DFSP in March '08 and had 4 surgeries in '08 and '09 last year I got a bit of a break after that but in January '11 found 3 new tumors. As they are not is a good place for more surgery I have been started on Gleevec so hopefully that will keep it under control.
The main thing you need to do - in my opinion- is to get as much information about YOUR specific diagnosis, get 2nd and 3rd opinions if you feel you need them - good doctors don't mind you doing that, most of them encourage it. As it is a very very very slow growing cancer there should be no need to rush into any decisions about treatment types.
Don't feel you have to be 'brave' or whatever. It is fine to be a bit scared a lot of that is because so much at this stage of things feels outside of your control. Once you get informed and on a treatment path you will be less scared and more in control.
Best of Luck

bobr said:

DFSP
I just found out I have dfsp after ther removed a grouth on my left shoulder. I am scheduled to see a specliast at Slown in nyc. Dont know what to expect. Scared stiff.

keep your head up!
I was recently diagnosed with DFSP and had MOHS surgery two days ago. I had my surgery at Emory Hospital in Atlanta, GA and they were great. They gave me local anesthesia. I was alert throughout the surgery and it was painless. I started experiencing a little pain after the anesthesia wore off and took a pain pill. This is the first day I didn't have to take any pain medicine. I just have to finish off the antibiotics. Bobr, I just wanted to encourage you the surgery wasn't too bad. I don't have to take radiation or chemo which is a blessing. So keep your head up.

I read somewhere this cancer is very rare and 1 our of every 1 million person is diagnosed with this cancer. I am an African American female. Rarely do you hear of African Americans getting skin cancer. So when I first saw the mole, the last thing I expected to hear was that it was cancer. So yes, I was very scared. I didn't know of anyone who had experienced what I was going through. So this message board is GREAT!

They did say this type of cancer has a high reoccurence rate. I read on this message board someone had their surgery years ago and the cancer had not came back. So I'm going to declare my healing and not worry about it. I just have to see the dermatologist every six months for the next five years. So stay encouraged!

Jhf said:

Diagnosed with dfsp
Just found out that I have DFSP, a lump on my shoulder that for 13 years I was lead to believe was a lypoma. after reading several sites I am now very scared that it has been left to freely invade for far too long! I am currently waiting on a second surgery to remove margins but about to push for a MOHs procedure, the other option is too traumatic! As I have been told that it could be 2 weeks of an open wound before pathology returns the results.

DFSP
I was diagnsed in july 2011 with dfsp.I've had two surgerys since sept 15.A one inch scar became a 10in scar.It was an overwhelming experience,I was told by my doctor the best treament was total excising of the turmor,to create clear margain.The tumor that began the size of a pea was located in the center of my back.No symptoms other than it began to grow,and increase in size to that of a golfball.I was told radiation was not necessary but not totally out of the question.still a little fearful that it could return,but proud to say I am cancer free.knowing that there are others out there going thru the same thing,is a great since of support system.I'm a 42 year old african american women,and this is unheard of in my community.Prayers and blessings to all of those suffering from this rare form of cancer.

BrendansMom said:

My 9 year old son was diagnosed with dfsp on his foot in April.
My son had a nickle sized bump on the top of his foot for only about 2 months when we had it removed (took me that long to get him an appointment). They determined it was dfsp, and admitted him 3 days later to do a wide local resection. They removed the skin and tissue on the entire top of his foot, from the bottom of his ankle to the top of his toes, and all the way deep down to the muscle and tendons. He had a wound vac on for 5 days, and then they did a skin graft off this thigh. Surgeon was confident that he got it all.

We went yesterday for our first quarterly re-check with his Oncologist at Childrens Healthcare of Atlanta's AFLAC Cancer Center. Chest ct scan was clear, and his MRI looked good, Dr said. He had originally told us after the surgery, that all the margins looked clear, but then told us yesterday that he may have 'missed' a report that shows the depth margin was not totally clear. They went all the way down to his tendons, so they really had no other way to go any deeper. As it is, my poor kiddo now has a severly indented foot, where the very thin skin graft did not fill in all the tissue they removed from the top of his foot. Dr is suggesting we meet with the pediatric radiology Oncologist to discuss our options. Has anyone else done radiation with much success? My thought is, why do radiation before we even know for sure that has re-occured? I know all about the high reoccurance rates, but I feel like it's a double edged sword here. If we do radiation now, the dfsp may not come back, BUT he may develop another kind of sarcoma years from now. A more serious sarcoma possibly. If we don't do it, the dfsp may come back, and then we may have to do radiation then, or possibly another surgery. Oncologist seems to think they can't go any deeper though, and the next step would be amputation. We want to try EVERYTHING possible before we get to that point! I feel like we should just watch it, and continue scans and mri's every 4 months, and if it returns, THEN we can look at radiating.

We talked about the Gleevac pill, and Dr didnt seem too confident in it. He said some dfsp's will become resistant to it, and he would need to take the pill the rest of his life. He is only 9 years old, I could handle him taking a pill the rest of his life if it keeps this cancer away! Also, who knows what kind of advancements in medicine they will discover over the next 50, 60 years?

How is everyone else doing that has had surgery? We are 4 months out, and healing fairly well....Brendan was able to wear his first pair of Nikes when school started last month

Melissa

My 7 year son with DFSP on his foot, too

Also my 7 year son has dfsp on his foot. He had 3 WE, but the cancer now seems to be hehre again, for his 2nd recedive. How is your son? Had he taken glivec? What about radiation? I'm writing from Rome, Italy and doctors have not a lot of exeperience in DFSP... Any suggestions?

Thank You very much

dfsp sucks

Hello all

I just wanted to tell all of you about my experience with DFSP

For a few years now, I have noticed a red lump growing on the side of my neck under my jaw line.at first i thought it was nothing and did noithing about it. They 2 years ago I told my dermatologist about it. He said it was nothing and gave me a prescription for cortisol cream.after a few months of nothing happening I went back to him last september and he took a biopsy of it. This is when I first found out that it was a tumor.

For the next couple of months I went to appointments and had an mri done to see how bad it was.

Finally last tuesday I had it removed. When I saw how much they took off I was in shock. they removed part of my cheek, up to where my hair line started, and down to my neck. Lets just say I have a big hole in my face now. They still have to open it up and dig deeper going into the deep tissuel; this is where the facial nerve is and if they screw up, my face will be even more disfigured.Once this is all done, I will be getting a prostesis to cover up the hole and I will have to wait another year for them to make it look nice. Because they want to make sure it doesn't come back.

My biggest advice for everyone is to go to your doctor if you see anything abnormal on your body like a red lump. It is not normal and you need to get it checked.