DFSP Friends.

natmcg said:

HI EVERY ONE :-)

Wow, what a holiday,! 3 wks off from cooking and cleaning.:-) :-) Im not one for lying in the sun but the deck chairs in a quiet corner of the ship were great for relaxing with a drink and a book. Your turn next Lone, are you taking the kids? My son has been to Cypris, said it was great,lovely people always happy. Carole sounds like your truly on your way to a full recovery. My husband is planing a trip for us to the USA later this year. Watch out I might come a knock'n. Lol. Did some one ask about dfsp spreading to bones.? Well yes it does. I read a post by a young lady when i first joined csn. It was an old post and from memory it wasnt under a dfsp thread. I was poking around reading stuff all over the place( as you do when first told you have a very rare skin cancer). Anyways her dfsp was on her chest and had past through all the soft tissue layers,muscle and into a rib. The rib was remover and I suppose that gave her the all clear. Iv read so many stories from dfsp survivors over the last 7mths its hard to remember the details. But i also remember reading that if a bone that is really needed has to be removed Dr.s can take bones from other areas of our body and use them to keep things structually sound. So Joanne, whats going on in Canada. Are you getting discount for evey new customer you refer to Dr.Gladdy lol.....;-) Seriously its great you did some digging and found her and now not only you but others can benefit from her experience with dfsp. Talk again soon Nat.btw Jo my dermstoligist/surgon said all his dfsp patients have been refered for second surgery (mohs) and recurence and thats why he  is continuing to try and make other dermos and GPs more aware of dfsp. He is strongly commited to educating them on early detection of dfsp.

 

Thanks, natmcg.  I wonder how they figured out that it was in her rib.  My wife's doctor says he doesn't think it's inflitrated the bone, but if we want to be honest about it, he has no way of knowing this.

www987 said:

Thanks, both.
She is being

Thanks, both.

She is being treated by surgical oncologist at a top US sarcoma center, but when your doctor says "this tumour never ever metastsizes" even though a simple google search will show that that is absolutely false, that really does not inspire a lot of confidence.  I guess that if he goes all the way down the bone and still gets positive margins then that will mean that it has reached the bone.  I just wonder what the treatment would be in that case (amputation?!?).

Sounds like you need to see another specialist for a second opinion.  That statement is absolutely untrue!!  I've read many articles on different mets to lungs, bone, brain/CNS, pancreous, liver, testicles even the uvala (dangly at the back of your throat).  I would expect that if there are still positive margins down to the bone he would do an MRI.  This will show if its in the bone. 

Lots of what I have read as well indicates with mets there is tumor "progression" whether it be changing to another variant, FS-DFSP, or the cells have started to proliferate faster, myxoid changes.  I have also read that if the tumor is cut this could increase the rate of proliferation (not sure how many surgeries your wife has had, I havent seen all your posts).  The cases I have read where it's in the bone they do radiation therapy but in some cases they end up removing the affected bone (if possible).  Where is hers located?

Jo

. 

www987 said:

It's on her upper arm and

It's on her upper arm and shoulder and she's had it for a very long time (at least 10 years). I think she was unlucky in that the overlying skin looked completely normal and so none of her doctors took it seriously.  She's had two surgeries so far: the first was a "biopsy" she did back home (in reality he took out much more than necessary for a biopsy, which made me really mad).  The second surgery was done a few months later at this sarcoma center in the US where the gross tumour was taken out but the margins came out positive.  I still don't understand the point of this second surgery but the recommendation after that was to do radiation followed by a wide excision.  The surgeon has promised not to close the wound until negative margins are achieved but I wish he'd tried to do that from the beginning!

I'm kind of hesitant to seek a second opinion at this stage.  The fact that it has the potential to metastasize doesn't really change anything in how it is treated, right?  If we  do go for a second opinion, what would be the best way to go about it without alienating her current doctor?

I always go by my guts.  If it doesn't feel right then you need to do something.  Good mechanic, bad mechanic.  They both get the job done but you visit the bad machanic more frequently.  Alot of people get second opinions when they have cancer.  You don't want to look back on the experience and say hey, I wish I had...

It sounds like it may be in a tricky place or it's too big for total excision.  Everything I've read with radiation prior to surgery is to shrink it to something more managable.  The key is acceptable clear margins.  My original surgeon who biopsied said "removal is the cure, it's challenging if they cannot get clear margins".  This will contribute to recurrence.  Most get more aggressive as they recur, hence why they say it has more metastic potiential. 

My General Surgeon referred me to a Moh's centre.  This was at the best skin cancer centre in Canada.  They did the surgery and I really wasn't impressed with the work up (or lack of) and they seemed quite flippent about the whole thing so I searched and found a sarcoma specialist.  I explained my situation and she is now my gal...my comfort level completely changed.

If your doc alienates her for being dudiligent then he isn't doc you want.  My two cents.

Good Luck!! 

Ontario48 said:

Hello Lone...All will be fine!

Nat is completely right.  Even though this is a very rare cancer, and yes a lot of doctors haven't dealt with it, it is very treatable and cureable. Sounds like your treatment is moving along just fine.  It's the waiting around that I found most difficult.  And then when you are past it you will be thinking, what the heck was that all about! 

This type of tumor can be un-noticed for years and misdiagnosed many times.  My first surgeon even said, its not cancer it's just a lump of fat.  Well hey, this IS a soft tissue sarcoma...which is in the FAT. Mine started pretty much the same as Nat's (ours are actually identical).  I noticed mine about 4 years ago starting with a skin plague, small smudge of darker skin.  And to answer your question, not all have the protuberans (stalky growths from the skin).  This cancer starts in the deeper layers and can grow up and out.  It also has projections...roots.  That's why the type of surgery.  They need to remove surrounding tissue to encompass all the roots.  So once you get what they call clear margins, you are good!!  Being on your hip provides a lot of area for your doctors to work which means easier recovery for you and better chance of getting it all.  I had Wide Local Excision like you will be having.  I was awake, I'd ask to be put to sleep if I had to do it over again.  There really is not need to be awake.  Nat had Moh's.  Lots of debate online on that one.  It' what you doctor feels is best for you and your situation.  My second surgeon was Moh's certified and I when to a Mohs clinic in Toronto and had WLE...go figure.  But he got it all in one shot and did a great job on the incision.

Being told you have cancer is scary.  Be assured that if you have to have a cancer, this isn't one of the BAD ones.  Some have these tumors for 10-15 years with no lasting affects after they are removed.  Its a slow growing cancer and it's extremely rare for it to spread anywhere else.  I've done alot of reading on this.  The best and up-to-date articles I found online where at National Comprehensive Cancer Network.  They really summarize what a thousand other articles are saying and its current, straight forward and easy to understand.  Alot of what you will find online is from years ago.  As Nat mentioned, you can find the horror stories but if you think about it, its the procedures that are they talk about and its usually due to infection or something...everyone survived and are cancer free.  Keep to readings by the professionals to get the straight facts.

You will be fine and Nat and I are here if you need to chat or have any questions. 

Cheers for now, Joanne

Hi Joanne,

I just learned yesterday that Ihave DFSP. I had a cyst looking thing on my lover back for 2 years, I actually had a birth defect there when I was born but no pain nothing than all of a sudden at age 37 that cyct looking thing poped out, it was perfectly round on a stalk it did grow very little in size in the past 2 yrs than last month when I was in the massage chair I got up all of a sudden and that lump stuck to a one of those round turning balls and ripped on the edges of the lump. So went to emergency cause bleeding badly they just put a protecting patch and told me to go to dermatology in the morning. At dermatology they schedule me for a removal of the lump within the next 2 days, result came yesterday that I have DFSP by the way hospital I went was Toronrto Western. Dr. told me nothing to be scared of but at the end it's the big "C" is always scarry he said, he will referred me to Princess Margeret.

It's been only a day, so far I had no call for appointment. My question is do you have any idea when they might respond and how long the procedure will take how fast was yours and do they do MOHS method in PM hospital...

Thank you in advance

Cheers!

I first want to say thank you to everyone who has posted here and took the time to share their story and give advice. As I am trying to gather more information about this type of cancer it is nice to know I am not alone even though I keep reading how rare it is. I found out yesterday that I have DFSP. It is on my lower left breast and has been there for about 2 years. Like many of you, I was told this was nothing. I went to three different doctors (2 internist and 1 dermatologist) and they all told me it was just fatty tissue. Finally I said I want to see a breast surgeon. He thought it was nothing too but he said lets be safe and do a biopsy. I had surgery, the surgeon did an excisional biopsy. It took two weeks to receive the results and now I am going back to surgery so the doctor can get clean margins. 

I have read there is a possibility of reccurance. My question is has anyone heard of DFSP happening in a new location of the body or does it only recur where you have had it?

~Grace

natmcg said:

Hi Grace,

Im so glad this dicussion board has been of some help to you. But im sorry you found yourself in the position of needing to look for info on DFSP.  

I wish I could help you more with the matter of reccuramce, but there doesnt seem  to be a clear cut answer availiable, only a small % of people with DFSP  reccurance situation and ,mostly it will occure  in or around the scar area probably due to clear margins not being acheived. To be honest I have read lots about it over the last two yrs, but my ability to recall imformation exactly is pretty poor. But I do know some one who can point you in the right direction for more onfo. . You have probably read some of her posts -Ontario48 Jo. Hopefully she will have time to drop in and help out.

Its sounds like  you have a strong will and have made  the right choice in pushing to see a specialist.

Best wishes and Iwill check in again to see how your doing.

Nat.

 

Thanks Nat for responding! I just had surgery this week and got the pathology report back today. My doctor said they were able to get negative margins so I pray that reduces the chances of reccurance.  I'll just stay positive

Grace

Hey members,

Just wondering how is every one doing? Thanks to all of you and Joe who helped me and guided me to right person. I am clear now and my Dr. is following up with me every year instead of 6 months which is a great news! Hope you all are doing good. I have been in touch wih Joe since my first post until today finally figured out how to post on main forum. Talk to you all later.

Jessie

Hi everyone,

I'm 23 years old and I was diagnosed with DFSP almost 2 years ago. I had MOHS surgery and they removed about 5 inches from my calf. Lately I have been having excruciating pain in the same area. There are no bumps that can be felt. I'm waiting for an appointment with the specialist that originally diagnosed me to evaluate for bone mets. Has anyone else had mets to the bone with dfsp that can share their experience? Thank you