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DFSP

amyr329
Posts: 4
Joined: Aug 2008

I was diagnosed last year and had the mohs procedure to excise it. I just found out yesterday that it has come back and need to have it excised again. I have read that there is a new drug therapy being used in conjunction with the mohs procedure for reoccurences. I was wondering if anyone on here has used it and is it effective? thank you
Amy

Rancho
Posts: 9
Joined: Sep 2008

Hi amyr329,

I was diagnosed with DFSP August 2008 and had the CCPDMA surgical procedure on September 2. Clear pathologic margins were achieved and I will have a body scan later in the month. I opted against the Mohs procedure to avoid any further surgeries. My clinician does not think I need follow-up with imatinib mesylate or radiation. Hope this helps.

Rancho

kristin29firefly
Posts: 1
Joined: Jun 2010

I was diagnosed with dfsp this year in March. In late March, I had a wide excision in which the pathology report came back with clear margins. I have read a story about a man with similar cancer and wondering why my doctors have not required anymore testing or imaging. I have become a little worried that the doctors in my area don't know enough about this cancer- so I wanted to contact someone who's going through this too. Any suggestions?

JC (not verified)

Hi,

I was told that I would have to have check ups for the next 10 years; and I am sure it will be longer than that since it will probably be part of my normal testing for the rest of my life.

Doctors do not know much about this type of cancer. I can say, though, that Dr. Victor Marks at Geisinger in Danville, PA, knows his stuff. He is in dermatology and has done about 40 of these surgeries over the years and has also written about the cancer. Depending on where you are, you could visit him or contact him for a referral to one of his colleagues who might be closer to you geographically and might also be familiar with the cancer.

Take care.
JC

clynnmorse
Posts: 4
Joined: Mar 2011

Hi, I was diagnosed in 9/2010....scared just like you. If you read my profile, you'll understadn why... the surgery went from being an exertion(1 inch) of a "no chance 99.9% fatty tumor) to being a 10 inch scar ...ended up growing from my mussel into my stomach( bowels) lining... but I AM CANCER FREE... you need to keep your head up...

quebec09
Posts: 4
Joined: Apr 2009

You are probably referring to Gleevec (Imatinib Mesylate). I in fact have not had any surgery (other than small exploratory) and I am going to go on Gleevec as a first line of option. My tumor is located in my face, and the last time I talked to a plastician, he wanted to take my whole face off ! Of course, he would have replaced it with ...flesh from my forearm...and then close the arm with thigh skin. Of course. Anyways. Gleevec has something to offer, despite a wide but mostly mild to moderate variety of side effects, and the studies state 57% complete response (cure) and 83% total when including partial response, wich can then be addressed with less invasive surgery. I sure hope I'll be in the 57%! There is a bunch of info on Gleevec on the net. As you mentionned, since you already had your MMS, it can also be an adjuvent treatment, pro or post operative, as is radiotherapy, or some traditionnal chemo (although less likely here...). It is in fact recommended for metastatic, recurrent, or unresectable DFSP, and 5 or 6 other cancers, mainly CML and GIST. Gotta go. Talk to you later...

lacretia
Posts: 4
Joined: May 2009

My 15 year son is currently taking 800mg of Gleevec daily. He has had reoccurences and was put on Gleevac after the last reoccurence. He has now been on gleevec for over a year. Although he is not cured of the DFSP, the Gleevec has definetely been working. You can no longer see it with the naked eye. With the DFSP being so large it was, when the third set Doctors first saw him, they were considering removing more of his abdomine and a couple of ribs. Since taking the Gleevec with all the shrinkage, the don't have to remove so much now. There are some side effects, however he has only experienced nausea shortly after taking the Gleevec. All I did was switch the time he takes it to in the evening before going to bed and he not has experienced the nausea or any other side effects since. I call it the miracle drug and would definetly recommend it to someone else. Please be sure to drink plenty of water when taking this medication.

sen0760
Posts: 9
Joined: Jun 2009

hello lacretia
I have been reading a lot about DFSP. Surgery no doupt is the first option. . But there is another pre operation option which is gleevec( IMATINIB).
I am looking for info on gleevec.lacretia is it possible to take the 800mg before sleep and which city the medication is take and do you need genetic tests to take it. Or the oncologist will go ahead with the biopsy report. Thank you.
The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe I can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22).I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly.But this new surgery will take the facial nerve out and other valuble muscles.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

lacretia
Posts: 4
Joined: May 2009

Yes, Gleevac can be taken at night before going to sleep. My son did not have to go through any testing before taking the medication. Once it had reoccured they put him on it. It is also recommended that you see an Oncologist that specialize in Sarcoma cancers, as they are more familiar with DFSP and you should also take the Gleevac after the surgery as well. I hope everything goes well with your surgery.

bstar
Posts: 22
Joined: Nov 2009

Been looking through the postings here and I feel your situation is closest to mine so thought
I'd contact you. I was diagnosed with DFSP in May 2009 after a golfball sized tumour was removed from my left cheek.The Biopsy showed DFSP. During my first Mohs appointment
the doctors suspected a larger hidden area than was visable which would require reconstructive surgery, I went home while a team effort was put together.Forward to Aug 31 2009 Mohs took place,after 4 sessions all clear was given,bandaged and admitted to Vancouver
General Hosp. for reconstruction Sept 1 2009. 12 hr.of surgery,7 days later I was discaharged.
Left side of my face: Gone-Parotid Gland,Gone-facial nerve,Gone-most facial muscles.Replaced
with muscle and veins from my left leg and a hardball sized skin Graft called a flap.

The flap took well and healed completely.My followup visit at 5 weeks was very good,pathology report "Success" Drs. words 99% success.The muscle taken from my leg made what they call a sling so my jaw won't droop over time.At 9 weeks the fluid buildup is gradually been absorbed,
Dr. said up to 6 months for total absorbtion,its 1/2 of what it was already.I'm using
self tanner on the Skin graft because of the colour variation between it and my tanned face.
I'd like to hear from you and how you're making out,DFSP is rare and on the face even rarer.
I had frost bite to my cheeks and ears twice in the High Arctic serving in the Military in
1964 also several bad sunburns in my lifetime,I'm a fisherman and outdoors all the time.
Just turned 65 last month. Take care,good luck.

JC (not verified)

Hi Bstar,

I just wanted to mention that I have found that my skin color is different now, even without a graft. Since they had to take tissue from my my upper left breast, and stretch the skin while slightly rotating the breat, the color on my upper center chest is different on both sides of the scar. Sometimes, it looks like I have a graft; so I am glad you mentioned sun tan lotion as I (and others) might need to do that with or without a graft.

Thanks!
JC

jconn1564
Posts: 2
Joined: Sep 2010

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.

BrendansMom
Posts: 4
Joined: Sep 2010

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

JC (not verified)

Hi,

My surgery was about 10 months ago and I am doing fairly well. I had Mohs with a surgeon (Dr. Victor Marks, Geisinger) who has done many of the DSFP surgeries over the past 15 years and I was happy with that.

It is good to hear about Brendan's ability to wear his Nikes. I hope he heals well.

JC

rpipergirl
Posts: 4
Joined: Nov 2010

Hi Brendansmom, I had DFSP on my arm just below the elbow. My oncologist told me that there is 95% chance it won't come back in the next 5 years. I was also told they do not like to radiate joints. If mine comes back in my joint I too face amputation. I truly feel for your son. That is a hard thing to hear. It was hard for me and for my mom as well. I am 36 years old. I had Hodgkin's 11 years ago too. It's been a rough road. I had 3 surgeries for my DFSP in 3 months July,August and September of this year. I have nerve damage that will take months to heal. Like in your son's case they went all the way down to the bone on me. I was also told radiation to a joint causes arthritis. Well my MRI showed I already have arthritis in the arm and I also have very badly in my opposite hip. Looking at a new one of those. If you want to talk more just email me rpipergirl@verizon.net Angie

Matteo Mum
Posts: 1
Joined: Apr 2013

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

natmcg
Posts: 118
Joined: Jun 2012

Hello my name is Natalie ,
I'm sorry to have read that your son has DFSP.

Unfortunately the person you have tried to contact hasn't posted on this discussion board for some years. There are a few DFSP survivors posting (including me) in the thread called DFSP friends. We are all adults but would welcome you and your son with open arms. We will try to answer your questions or just be there for support if you want. Please join us we understand how rare this cancer is and how confusing the choices can be.
I'm going to send you an email aswell so you know your post was read.

Take care and best wishes
Nat.

rpipergirl
Posts: 4
Joined: Nov 2010

I had Mohs. If you do it make sure she is sedated NOT awake. It is cruel awake. I was lucky enough to be sedated most aren't. Just a word of caution. I will pray for her. Angie

jwmassey
Posts: 4
Joined: Feb 2011

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.

clynnmorse
Posts: 4
Joined: Mar 2011

I am a cancer survivor of DFSP... you need to have him have the mohs prcedure... its painless and it clears the margins.... trust me... my dfsp went from my skin to my stomach lining and they got it all bc of mohs. god bless

jwmassey
Posts: 4
Joined: Feb 2011

Thanks for replying. I am going to insist on this procedure. I live in Rochester, NY and he will be going to U of R Strong Medical which is a good hospital. A plastic surgeon will be doing the surgery. He did the first one. I will update on this site. I wish others would update their entries. I would be so interested on how others are doing, especially the earlier ones from 2008. May I ask how they operated on your stomach lining? How long ago was this?

never_again
Posts: 2
Joined: Mar 2011

Hope you are getting on ok. i was reading your posts and agree with the 'update' suggestion. I would love to know how people are doing after two, three or more years. I was first diagnosed March '08 and had 4 surgeries, 2 MOHs. Unluckily I've got three new tumors on the old surgery sites so am now on Gleevec. Going ok so far and to be honest I don't feel any different than before I started the Gleevec. At least nothing noticible because I was always tired and irritable - or so my OH tells me :-)
Best of luck

sen0760
Posts: 9
Joined: Jun 2009

Hello lae
Thankyou for your info. - am scheduled to have the sugery on the 28 july.
So far - have not consolted an oncologist since i live in lebanon now. I will try to. - will take your advise and go
With it since it is a hard area for resectionm.
Best wishes and prayers for your son

rpipergirl
Posts: 4
Joined: Nov 2010

Here is a link to a support group for us and also to my DFSP website. http://www.facebook.com/group.php?gid=91657360264

https://sites.google.com/site/dfspresourcepage/
Please check them both out. Our cancer is so very rare we need awareness for it. Also if you had or have a hemangioma or port wine stain they are both benign spindel cell tumors and you should tell your oncologist as Dana Farber is doing a genetic study to see if these increase risk for DFSP. I had a hemangioma on top of my head. so attractive,NOT! lol.

JC (not verified)

Thanks very much for this.

JC

bobr
Posts: 3
Joined: Mar 2011

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
Posts: 3
Joined: Mar 2011

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.

never_again
Posts: 2
Joined: Mar 2011

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

conqueror65
Posts: 1
Joined: Apr 2011

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
Posts: 1
Joined: Apr 2011

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.

trenille
Posts: 1
Joined: Nov 2011

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.

kyoungs
Posts: 3
Joined: Sep 2011

Hi trenille. I too had a golfball size tumor removed- it was on my forehead. I had a great medical team helping me through this and they created a skin graft from shoulder to repair my forehead. complications and a second surgery hopefully has me on the mends. My appreciation goes out to the wonderful staff at Cleveland Clinic. This is not only a science of medicine but reconstructing a body is quite the art. I wish you the best in recovery!

AnthonyBrose7
Posts: 3
Joined: May 2013

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.

 

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