DFSP Friends.

Ontario48

Patti_T said:

Newly diagnosed

Hi everyone!  So glad to find this page!

Here's my story (so far):  3 weeks ago I had a lump removed from the back of my neck that turns out to be DFSP.  Met with oncologist on Friday. Started lots of testing.  Researching to find a Mohs surgeon in Western Pennsylvania who has experience with DFSP.  I feel like I'm on a "doctor rollorcoaster".

My biggest fear is how big it might be (the DFSP and the surgery).  Anyone else have it on the neck?  Mine is right on my spine.

STS Specialist

Hello Patti with a captital T ; )

My best advise is to find a soft tissue sarcoma specialist.  I know lots have began this journey with a dermotologist, and have much faith in that,  but sarcoma is a tricky cancer.  It is very rare. i have confidence in the sarcoma oncologist. A lot of dermos treat it like a basal or squamas type carcinoma but its not. Some are great, dont get me wrong, if you have one thats well informed go with them.

None of my docs had a clue.  At first I was dismayed but the more I read the more i understood. It truely is very rare and not many surgeons let alone dermos have experience with it.

That all being said, not many actually die from this cancer. The trick is to...pardon the expression, dig it out. Surgery is the mainstay of treatment.  Removal is the best course.  It sounds brutal but I have friends with other cancers like breast and colon and they are on the toxic drip. That, in my mind, its much more invasives then a few dents in our hardware. I much prefer a good scar story then the months of sickness and heartache that chemo brings. Always look for the silver lining.

Find your emotional comfort, work with doctors you can talk to, stay in control of what happens to you...you are your best advocate.  Follow your instincts...they are always right.

Good luck, stay positive.

Cheers, Joanne

Patti_T

Ontario48 said:

STS Specialist

Hello Patti with a captital T ; )

My best advise is to find a soft tissue sarcoma specialist.  I know lots have began this journey with a dermotologist, and have much faith in that,  but sarcoma is a tricky cancer.  It is very rare. i have confidence in the sarcoma oncologist. A lot of dermos treat it like a basal or squamas type carcinoma but its not. Some are great, dont get me wrong, if you have one thats well informed go with them.

None of my docs had a clue.  At first I was dismayed but the more I read the more i understood. It truely is very rare and not many surgeons let alone dermos have experience with it.

That all being said, not many actually die from this cancer. The trick is to...pardon the expression, dig it out. Surgery is the mainstay of treatment.  Removal is the best course.  It sounds brutal but I have friends with other cancers like breast and colon and they are on the toxic drip. That, in my mind, its much more invasives then a few dents in our hardware. I much prefer a good scar story then the months of sickness and heartache that chemo brings. Always look for the silver lining.

Find your emotional comfort, work with doctors you can talk to, stay in control of what happens to you...you are your best advocate.  Follow your instincts...they are always right.

Good luck, stay positive.

Cheers, Joanne

Thank you Joanne!

Thank you Joanne for giving me someone to talk to!

I got my blood test and CT results back which showed no metastisis.  That was a huge relief.

Unfortunately, I haven't talked to any doctor (oncologist or surgeon) who can give me more information other than what I'm able to find on the internet.  They've never heard of DFSP.  It is so frustrating.

I found a Mohs surgeon 2 1/2 hours away who I believe has some experience with DFSP.  I go Monday for a consult.  I'm praying that he is the one.  

This is a very lonely process. No one seems to understand.  Some of the people I've talked to actually said "Oh, it's just skin cancer".  I know it's not the worst kind I could have, but it's a lot more than having a mole removed.  I am grateful that it's curable, but that doesn't mean I'm not scared.  I just wish someone, anyone, could answer my questions.  I wish I could even predict how long I'm going to have to be off work.  I'm a Special Ed. teacher and I'm going to have to tell the kids something.  They don't respond well to changes in their routine.

I know that I need to let go of planning and just let the process happen, but that's hard for me.  Some days are good, and some days I melt into a puddle of worry.

I know that the outcome will be great....I just need to get over a few hurdles first.

Thanks for the encouragement!

Patti

Ontario48

Patti_T said:

Thank you Joanne!

Thank you Joanne for giving me someone to talk to!

I got my blood test and CT results back which showed no metastisis.  That was a huge relief.

Unfortunately, I haven't talked to any doctor (oncologist or surgeon) who can give me more information other than what I'm able to find on the internet.  They've never heard of DFSP.  It is so frustrating.

I found a Mohs surgeon 2 1/2 hours away who I believe has some experience with DFSP.  I go Monday for a consult.  I'm praying that he is the one.  

This is a very lonely process. No one seems to understand.  Some of the people I've talked to actually said "Oh, it's just skin cancer".  I know it's not the worst kind I could have, but it's a lot more than having a mole removed.  I am grateful that it's curable, but that doesn't mean I'm not scared.  I just wish someone, anyone, could answer my questions.  I wish I could even predict how long I'm going to have to be off work.  I'm a Special Ed. teacher and I'm going to have to tell the kids something.  They don't respond well to changes in their routine.

I know that I need to let go of planning and just let the process happen, but that's hard for me.  Some days are good, and some days I melt into a puddle of worry.

I know that the outcome will be great....I just need to get over a few hurdles first.

Thanks for the encouragement!

Patti

Be Strong

Hello Patti

Find a good doctor. Get all the info you need to make a decision. You have time. I rushed into my treatment because I was freaked out I had cancer. You dont have to rush. Get as much info as you can.

Yes a lonely process as nobody knows what you are going through (well except us). Its all on you and thats scary. Take the time you need. This cancer is different. Find a doc who knows it. You will be fine. The next year will be an adjustment but you will get through it and you will be stronger.

Its all about you right now. You are a care giver and its hard for you to let go and focus on you...like you, its weird to put me first...but you must. Once you sort this out you can do what you are good at...giving.

cheers for now, what ever you need just ask.

 

Jo

 

 

Ontario48

Ontario48 said:

Be Strong

Hello Patti

Find a good doctor. Get all the info you need to make a decision. You have time. I rushed into my treatment because I was freaked out I had cancer. You dont have to rush. Get as much info as you can.

Yes a lonely process as nobody knows what you are going through (well except us). Its all on you and thats scary. Take the time you need. This cancer is different. Find a doc who knows it. You will be fine. The next year will be an adjustment but you will get through it and you will be stronger.

Its all about you right now. You are a care giver and its hard for you to let go and focus on you...like you, its weird to put me first...but you must. Once you sort this out you can do what you are good at...giving.

cheers for now, what ever you need just ask.

 

Jo

 

 

How...

hi Patti...how di Monday go?

Jo

ashrac

New to the forum

HI!

I just wanted to say that I found out I had DFSP January 2015 and just had the wide local excision done yesterday. I visited this forum a few times before the surgery and reading all of your comments has been immensely helpful to me as I go on this journey  

Now I'm just waiting to hear that the margins are clear so the plastic surgeon can close me up! 

americanswiss

New to this page

Thank you for starting this forum! 

My husband was diagnosed with DFSP a few years ago in Zurich, Switzerland. He had a large tumor removed from his back, the size of at least an orange. The doctor didn't realize how big it was until the first surgery when they opened it up. It looked like a small lump on his back, but it went much deeper and was huge. It took two separate surgeries to remove it. They did a skin graft to cover the area on his back, which is about 3x5 inches big. It doesn't look pretty, but at least with the graft they can tell much easier if it grows back.

He also has a family history of fatty cell cysts that form under the skin. He had several lumps taken out from his wrist and arm area the size of a jaw-breaker candy and marble size. He had a few others on his back. This seems like it's an ongoing thing for him to keep an eye over the coming years, in addition to DFSP. 

Now, we are living in NY and looking to find a doctor specialized in this area so he can do his follow-ups in the US. 

Thanks again for starting the forum, since it is such a rare cancer and hard to find information. 

 

ashrac

americanswiss said:

New to this page

Thank you for starting this forum! 

My husband was diagnosed with DFSP a few years ago in Zurich, Switzerland. He had a large tumor removed from his back, the size of at least an orange. The doctor didn't realize how big it was until the first surgery when they opened it up. It looked like a small lump on his back, but it went much deeper and was huge. It took two separate surgeries to remove it. They did a skin graft to cover the area on his back, which is about 3x5 inches big. It doesn't look pretty, but at least with the graft they can tell much easier if it grows back.

He also has a family history of fatty cell cysts that form under the skin. He had several lumps taken out from his wrist and arm area the size of a jaw-breaker candy and marble size. He had a few others on his back. This seems like it's an ongoing thing for him to keep an eye over the coming years, in addition to DFSP. 

Now, we are living in NY and looking to find a doctor specialized in this area so he can do his follow-ups in the US. 

Thanks again for starting the forum, since it is such a rare cancer and hard to find information. 

 

Hi americanswiss,
I'm sorry

Hi americanswiss,

I'm sorry to hear about all your husband has had to go through, and I wish him the BEST! 

I was diagnosed with DFSP and just had surgery to remove the tumor from my lower back. I live in NYC and my surgery was performed by Dr. Katia Papalezova. She's a sarcoma, melanoma, and surgery specialist with Montefiore Medical Center. She's knowledgeable on the subject and is a great, confident surgeon. 

That's just my recommendation on where to start if you're looking for great care

mimic1178

americanswiss said:

New to this page

Thank you for starting this forum! 

My husband was diagnosed with DFSP a few years ago in Zurich, Switzerland. He had a large tumor removed from his back, the size of at least an orange. The doctor didn't realize how big it was until the first surgery when they opened it up. It looked like a small lump on his back, but it went much deeper and was huge. It took two separate surgeries to remove it. They did a skin graft to cover the area on his back, which is about 3x5 inches big. It doesn't look pretty, but at least with the graft they can tell much easier if it grows back.

He also has a family history of fatty cell cysts that form under the skin. He had several lumps taken out from his wrist and arm area the size of a jaw-breaker candy and marble size. He had a few others on his back. This seems like it's an ongoing thing for him to keep an eye over the coming years, in addition to DFSP. 

Now, we are living in NY and looking to find a doctor specialized in this area so he can do his follow-ups in the US. 

Thanks again for starting the forum, since it is such a rare cancer and hard to find information. 

 

Hi Americanswiss, may i ask

Hi Americanswiss, may i ask where you went?  i am starting my process now and have received a few referals and some advice.  I am fortunate to be in the NY metro area.  Just trying to work through this.

 

Best,

mimi

mimic1178

New to this

Hi,

I had a small reddish colored nodule for a few years, can't really remember when it developed.  It is less then a 1 cm, probably like .5 or so cm.  I had it removed two weeks ago and it came back yesterday DFSP.  I am obviously kicking myself for not going earlier.  I do not know how bad it is, the more i read online the more overwhelemed i get.  I am not sure what size is large?  The doctor told me it was one of the smaller ones he has seen, but I asked if it possible the tumor grow down and big under.  he thought the surface size was a good sign.  A Mohs doctor can see me this Wed to remove it, but i worry no one wants to do an MRI.  I emailed a nurse i know at a top hospital, i would have to wait a bit as they rerun pathology and then a consultation and MRI.   I am not sure if i should just remove ASAP or at this point wait a few weeks and go to the hospital.  Since it is rare i wanted to go to a research hospital.  i worry so much the MOHS dr removes it but what if he doesn't know what these cells look like, what if it went down deep and he lets some stay?  Does it grow even; up as much as down?   What are the chances i have a large tumor under, would i feel it?

I need sage advise or thoughts as i start my process.

 

Best

natmcg

Unable to post replies.

Test post wish me luck.

natmcg

Im back

Finaly got things sortedand can post on all theads again.

Hey Jo, did you flag me again lol.

Anyway if anyone wants to chat for whatever reason. Ill be checking regually for a while as im once again recovering from surgery . But this time carpal tunnel on ny write hand which is my dominant hand so you all have to put yp with my left handed typos 

 

Bye for now

Nat