Dermatofibrosarcoma Protuberans.

he rachel,

I dont have experience of your type of sarcoma, but my son, who is now 19 had a sarcoma on his shoulder removed, like yours in error after saying it was a lump of fat!

He has now had four operations, radio therapy ,and chemotherapy, but the latest op, in june this year, was completely clear, with no cancer cells found, so were finally getting there, as you will too.

Arrons sarcoma was , however, high grade, and therefore was hit with the radio t, and then chemo after a small recurrence, he has his next check up this friday!!

good luck with your op, there is a very good sarcoma forum , you can join through sarcomauk, the people there are very experienced with sarcoma, and im sure you wi;ll find it helpful,

alison x

Hi alison,

Thank you for the information about the forum, I will certainly check it out.

I hope all is well with your son now, so pleased it was eventually picked up and dealt with. I guess it just shows how well disguised these things can be.

Well as for a  little update, the operation went well I now have a very well bandaged leg and came out of hospital today. Can't say it looks too pretty at the moment but I know its going to get better. I'm healing well which is the main thing. I have been truly blessed as I'm not in pain which I thought I would be. (fingers crossed I haven't spoken too soon). I'm on strict bed rest and I'm wearing some very sexy surgical stocking lol. I just need to wait for the pathology results of this operation. I do hope this is the end of it.

Rachel

x

Hey im 19. i got diagnosed with DFSP when i was 15, after having what my doctor thought was  a cyst in my upper left thigh. i had it removed after finding out it went deeper than my doctor thought. I have never been offered a scan of any sort before, during or after? is that right? i feel like i should have some sort of scan just to make sure there isn't anything left. for 4 years now, all my checkups have consisted of is the surgeon feeling my leg for about 30 secs and then saying yep that's fine. Is that right. I have heard DFSP can come back aswell.. and how would he know if he never checks properly.

Thanks guys any feedback would be great 

Hi Carmzee,

It sounds like you have received the exact same checks my consultant has given me. Two years down the line and I'm still free from it. You are 4 years on that is good.

I think it is a case of being vigilant to any changes in our own bodies. I had a small lump develop last year in the op site, the GP referred me immediately and within 4 weeks the lump had been removed (how's that for NHS service :) ), the results showed it to be overgrowing scar tissue. But if you are concerned about any lump or bump the GP will react quickly to your concerns now because you have a history. 

Like any cancer DFSP can return, but it is likely to be in the same area as it had previously been. According to the research I've done.

I know its easy to say and harder to do, but don't worry about it returning. Enjoy your life to the full, you are very young, just be aware of what your body is doing and get anything suspicious investigated.

Love and light

Rachel 

Hi Rachel,

I've had exactly what you had, I had a lump in my upper left thigh since I was 14 and when I got married and pregnant when I became 28 the lump became a little bit bigger I decided finally to remove it last month but the doctor said though it looks like a dermato fibroma he would rather take some fats under it just in case, I did it and was shocked and the doctor also was surprised when we read the report that its a dermatofebromasarcoma grade 1 the dr. Told me I wont need kemo I just need to remove more area around it from my thigh including a layer from the muscles Which will need a plastic surgeon to cover the muscles.

since you already did the operation I want to ask you did you remove layer from the muscles? And did it affect walking? After how long where you able to walk totally fine?

thanks a loot rachel its a very rare disease and I was blessed to find someone sharing her experience, I have a three month old baby and I wish this operation won't affect the way I walk or drive. Waiting ur reply ASAP.

Hi Ami,

I've just seen your message. Massive Hugs, you will be OK.

So glad you won't need chemo, that was my fear when I was first diagnosed. Its a rare one but one they can remove surgically.

When they did the operation on me they didn't need to take a layer of muscle.

It was very difficult to walk for quite a while after the operation. I was kept on bed rest for 5 days and told to continue to rest for a couple of weeks there was a big wad of bandage in my leg to hold the graft in place so you won't want to move around too much. I was bandaged for 8 weeks if I remember correctly and the thigh is so awkward to bandage that it kept slipping, that caused some pain and could get uncomfortable, other than that I didn't actually feel too much pain which really surprised me. Weirdly the plastic surgeon who did my op did a much better job at bandaging me up than the nurses did. lol. They were changing my bandages weekly so I got to see the progress as it healed.  

Once the bandages are removed for good and they just wad it and cover it with a surgical opsite covering it feels a lot more comfortable. I used crutches for the 8 weeks and then a walking stick for another couple of months, though the last month I didn't really need the walking stick but I used it more as a barrier between my leg and people/obstacles/the puppy.

It has been 5 years since my operation and it hasn't returned so job done.

If you need someone to talk to before or while you recuperate happy to listen and offer any advice.

Much love and I wish you a speedy recovery

Hi Rachel,

I know it’s been a long time since your original post, but I’m hoping to hear an update on status. I was just diagnosed with DFSP and I’m admittedly nervous. I was originally being treated by a general surgeon but my boss basically forced me to seek specialized care (lol!). I’m glad he did because after speaking with someone at the main treatment center in my area, I already feel like they will take better care of me. I was getting very little information from my surgeon and I felt like he was insisting on continuing my care so he could say that he treated someone with this rare cancer. I would love to know if you have required any further treatment and if so, what kind. Based on the last post I saw from you it looks like you had remained cancer-free, and I’m hoping that’s still the case! Thank you for sharing your story. It definitely helps to hear other people’s exciting with this!!

Hi Rachel

I also had dfsp - I'm two years clear now. Mine was on my scalp and I also had three surgeries before I got clear margins. It's terrifying but you will be ok. I'm part of an incredibly supportive group on Facebook. They have seen me through this and continue to be there whenever I need a friendly shoulder....

Please join us if you're on fb. Dfsp is so rare, many doctors have never heard of it. But the support group has members from all over the world and a couple of pathologists who are researching dfsp and are happy to offer advice when needed. 

The group is called

dfsp - dermatofibrosarcoma protuberans

They are truly amazing and have helped me a lot!  I hope to see you there but if you want to message me here, please do xxx

Sam

Hi , welcome to the community, though sorry to hear about your diagnosis - like any diagnosis it is not at all unusual to be nervous at the start. By clicking on the name in a message you can see the last post a member made and I see Rachel last posted quite some time ago but I also found a user with the same user id with 2014 appended https://community.macmillan.org.uk/members/meadowsweet2014/activities and there they last replied 1 year ago.

<<hugs>>

Steve

Hi Fleb,

It has indeed been a long time, so long in fact I've had to reactivate my account. lol... I am still all clear and no sign of it returning. I was in the care of a plastic surgeon who was fantastic. I had a subsequent little op to remove a little nodule which turned out to be a scar tissue which was over growing a little. That took place in a University hospital and they were very interested in the type of cancer because it is so rare. 

Good luck with your treatment and I hope you have a speedy recovery and no re-occurrence in the future. 

Much love.

Rachel