Dermatofibrosarcoma protuberance (DFSP) Recurrence

Coffey said:

Here goes

Greetings Joanne from Australia,

My short story is this;

I noticed an unusual lump on the rear of my left upper arm about 6 inches down from my shoulder. It was pertruding. I was referred to a Skin Specialist who said "don't worry its only a cyst!! OH YEAH.. Even I knew that was wrong.

Nevertheless, and back with my GP I persuaded him to excise it and after almost 4 weeks of pathology and after sending the sample away from Australia the DFSP decision came back. The remanents of the sarcoma lession by this time had come to the surface after the GP's cut and it was radiating red lines out from the 1 inch cut. No this was not an infection but the disease breathing and growing as I put it. Next followed quick surgury and a wide long insision with the doctor not really knowing why the cut was so big or had to be. I got the impression he read up on it that morning. After 6 months of wound infection on 14.9.12 the wound healed over exactly 6 months after the op. First C/T and MRI this month were clear except to find that a metalic clip had been left in my arm.

The value of any major health problem is that you get a chance to re evaluate the bigger questions of life and to adjust if you are given time. That is why I retire in two days time. Work is good but the best day in the Office does not count for much when you are dying (hopefully in twenty five years time). I want to remember the continuing great marriage I have the good I have done by volunteering, the fact that I have watched my grand children grow and have become part of their lives. This also means by default more quality time with my adult children. I could say that DFSP was good for me for these reasons but only if it does not re occur.

Enough of me. How are you??? What is your story and is your Countries health system more across this than mine?? Today the weather is fine after almost 3 weeks of rain and heavy winds. Welcome to global weather change!!!

Best wishes

 

Jeff

 

 

 

 

Hope you have  a wonderful party planned to celebrate such a wonderful milestone!!

Cheers, Joanne

Thanks all for your good wishes.

Yes I am now över the hill" and retired but I have never worked sooo hard on our new place which was a poor house in a very good street and needed a reno. My first CT/MRI was clear and to date my left arm has not exploded as i feared if i put stress on it with heavy renovation work etc. That's good!! and life is good.

Cannot help my self.

I have been working since I was 9 years old starting in my Dads family businesses and yes I have started looking for work again!! despite being on superannuation. The government here (in Australia) wants you to work and the tax rate drops if you return to work. I hope for two days work and day or two of charity work then lawn bowls for three days with the mates as we can play all year round or I would like to try Chess which I want to learn to play.

I think the Canadian version of lawn bowls is on ice with kettles or something. I saw it on TV and it looked good with people sweeping the ice as the kettles drifted to their mark.

 Do not let the Doctors have their way without having your say!!!

Best Wishes

Jeff

Coffey said:

Onwards

Thanks all for your good wishes.

Yes I am now över the hill" and retired but I have never worked sooo hard on our new place which was a poor house in a very good street and needed a reno. My first CT/MRI was clear and to date my left arm has not exploded as i feared if i put stress on it with heavy renovation work etc. That's good!! and life is good.

Cannot help my self.

I have been working since I was 9 years old starting in my Dads family businesses and yes I have started looking for work again!! despite being on superannuation. The government here (in Australia) wants you to work and the tax rate drops if you return to work. I hope for two days work and day or two of charity work then lawn bowls for three days with the mates as we can play all year round or I would like to try Chess which I want to learn to play.

I think the Canadian version of lawn bowls is on ice with kettles or something. I saw it on TV and it looked good with people sweeping the ice as the kettles drifted to their mark.

 Do not let the Doctors have their way without having your say!!!

Best Wishes

 

Jeff

 

 

 

Hi Jeff, I suppose you were expecting.a reply from Jo(not from your neighbour down under) Well Iv spoken to her and she is having a problem finding you. Lol. So your tests are clear and your arm hasnt exploded, that's good news. Reading your post gave me.hope, Oh No... Im not talking about my.DFSP!! I'm talking about some day getting all.the half finished projects that my husband has around the house completed. I can't see him having ANY spare time for bowls when he retires. On a.more serious note I have decided to ask for a chest xray or maybe an MRI. As Jo says it gives us peace of mind and should anything go wrong again in the future at least they (the Drs ) will have something to compare any future test to. Keep enjoying your retirement or is.it semi retirement now.lol Nat.

AnthonyBrose7 said:

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.

Hello Anthony,
So sorry to hear that you have joined our "one in a million club" but welcome and thanks for taking the time to share your story. How right you are, we should never ignore changes in our body and we should never let Dr.s tell us its nothing to worry about untill they have done the appropriate tests. Im one of the lucky dfsp people mine "poped up" (all be it very slowly 10yrs +) under my left breast so scaring isnt a big issuse for me.(lots of skin, fatty tissue etc to spare).
How awfull it must have been not to be prepared for such a large excision. If you had an MRI shouldnt the surgon have been able to make an educated guess as to how much he was going to remove? And prepare you for the outcome. Still the most important thing is that they get clear margins because that means less chance of reocurence. You say that you need more surgery. Is this because clear margins have not been acheived? Im guessing you fidnt have MHOS.
Sounds like you still have a way to go before this is all behind you. But with the help of a good plastic surgon in time you will be as good as new.:-) I have read some other posts on this site in other dsfp threads by people who have had dfsp on and around the face and they have come through it just fine and so will you. I hope you will drop in agsin and let us know how your doing.

There are a few of us here that post and share information and support each other.

DFSP friends is where we mosty chat but you can be sure one of us will respont where ever you post. We' er a curious little bunch and seek out newcomers to dfsp where ever they are.
Good luck in the coming weeks
Natalie   

PS. btw Im in Australia, my dfsp friends are from canada,denmark,england,america,and italy.Where in the world are you..?

ryan and family said:

thank you for sharing

Hello AB7.  I visit a few times a year.  My son was diagnoised 2 years ago and had substantial WME on his head (5cm = about 1/3 surface area).  Over time he developed a red bump at a young age, and yes, he is part of the 1 million (10 million for children) club.  He has been amazing through this, and with frequent check ups in Canada, is doing well.  We take 4 month blocks at a time for check ups and look forward to future reconstruction which he now wishes for.  My thoughts are with you and know that this is very rare and unkown to most.  Our focus is in careful check ups with dermatologists, plastics and ongologists, as well as, biopsies.  We will wait another year (2 years free now) before moving forward. This was very overwhelming but this group has been very helpful for me.  Our surgeons have also been very helpful (even though decisions come quick).  Eventhough our son is young, children do ask.  We keep teachers and school friends aware and they are supportive. Agreed, get it checked out (it took us 9 months before we had a diagnosis).  Thanks for sharing, ryan and family.

 

Hi Ryan,

Its wonderful to hear that your son is doing so well. . AB7 didnt write hear again. He found a  face book group and got his support through them. I am dsfp clear for almost 2yrs now and feel quite sure I am over the worst. 

Best wishes and happy new year to you andyour family

Nat. Mcg.

Nattyc said:

Dfsp x3 then tumor in pituitary gland

Hi , you sound like somebody i need to talk to. I feel so alone.when I was 5 I banged my chest on my bike which caused a bruise like scar. For many years consultants tried various treatments to shrink it but nothing worked. Once I had stoped growing I had an op to remove the scar, after which I first found out I had dfsp in my right breast also, I was 21 at the time but they removed. Then i had another op a few months later as they hadn't removed it all. Then I found another small lump which turn out again to be dfsp as they still hadn't removed it all. Four years ago I had to have breast reconstrucation finally felt like a women ish again. Then 3 years ago I was suffering server headaches, after an MRI they found a tumor in my pituitary gland (brain) called a prolactinoma which I take medication for and may do for the rest of my life. However after moving cities I spoke to a new consultant who said that prolactinoma is linked to the breast as they produce milk even tho Im not pregnant. So now I wonder are they related? As dfsp so rare and each case varies so much in difference how would my consultant really know? now this evening  ten years on, I have just found yet a another very supisous lump just above my scar on my breast. So trip to the doctors in the morning all I know is I had enough bad luck for my short 30 years, but if it is dfsp I'll battle it but it's yet another set back, athough again il win but as I'm finally at university studying law and criminology which I have waited all my life to do I need to know what options are out there. As I don't want to spend my 31st year as I did my 21st (worst year of my life to date) please any information you can provide for me to research would be greatly appreciated. 

Kind regards

nattyc

Hi Nattyc,

I would suggest you see a STS specialist as sarcoma is a tricky cancer.  I have read about spread to the pituitary gland.  Sounds like you've had quite the journey.  Keep on top of it and don't stop until you are satisifed.

Cheers

I was diagnosed with dsfp about a year and a half ago. I've had mohs surgery(twice because they didn't get clean margins the first time) and I've gone to and oncologist and a dermatologist and neither of them have ever worked with this type of cancer. They both on separate occasions just looked at the scar where my surgery was and said everything looks fine and they don't even touch it. How are Drs supposed to determine if it came back or Not. When it reoccurse is it noticable to the naked eye or do the have to do an mri or ct scan to truly determine if it came back or not? I know with mohs surgery it's unlikely it will come back, but I don't want to take any chances and it worries me that the Drs are not doing any sort of test on the area. I feel like my scar is acting very similar to  the scar that I had that turned into the cancer and it has me worried but both Drs said everything looks fine. I know this thread is super old, but it's really hard to find information about this that is not just facts about what it is. i can not find anything about how they follow up or reoccurrence So I'm really hoping someone on here can help me understand.

Hi, just wondering how people are getting on

Hi all,

I had a decently sized tumor removed from abdomen Sept 2017 which I later found out to was DFSP.  After the biopsy came back,  I immediately went to see an oncologist about it.  I was told that the margins appeared to be clear and there was nothing more that needed to be done besides getting another MRI in 6 months and perhaps yearly after that.  Forward to today (about 9 months later),  I had to find a new oncologist as my previous doctor shut down the practice.  I went over everything with the new oncologist and she said similar this that the first did (chemotherapy won't be needed) but she stated that she would like to talk it over with a radiologist and go over with them as she is not familiar with DFSP and then let me know their decision on radiation at my next visit.  I went in and did the MRI.  The day after, I got a call from her office stating that she had put in a request for me to schedule an appointment with a radiologist directly.  I requested a copy of the MRI but as I am not a medical professional, I have no idea what I'm looking at.   Should I be worried that she wants me to meet with a radiologist instead of sticking with the original statement of "talking it over with the radiologist and following up with me on our next appointment"?  Has anyone else had to do radiation for DFSP?