Dermatofibrosarcoma protuberans (DFSP)

Cuda340 said:

DFSP

I was diagnosed with a large tumor on the top of my head. Scheduled for Mohs surgery in 2 months because the surgeon is booked. Has anyone had it on the head and if so can you give me any advice.

Hi sorry to hear about your dfsp. My tumors were not on my head so I cant help you with that.  What I can say is dont worry about having to wait for surgery. This is a slow growing form of cancer. The most important issuse (from my point of view) is to have a Dr.who knows what he/she is dealing with, and can offer you answer 5o all your questions. 

There are a few  old posts on this board from people who have had dfsp  on and around  their face and head. From what I remember reading the removal of dfsp is  the same anywhere on the body.they keep going untill they get it all. There could be a a need for skin grafts/ transplants depending on the amount of tissue removal. I was lucky even after having a peice af flesh the size of a small mobile ph removed there was still enough strech in my stomach to pull it all together and stitch it up. 

If you havent already doneit, I suggest you tap on the heading Discussion Boards and have a read of the other posts about dfsp.  I will check in again in a day or two to see if you have been back.

 Bestwishes 

Natalie.

natmcg said:

Cuda340

Hi sorry to hear about your dfsp. My tumors were not on my head so I cant help you with that.  What I can say is dont worry about having to wait for surgery. This is a slow growing form of cancer. The most important issuse (from my point of view) is to have a Dr.who knows what he/she is dealing with, and can offer you answer 5o all your questions. 

There are a few  old posts on this board from people who have had dfsp  on and around  their face and head. From what I remember reading the removal of dfsp is  the same anywhere on the body.they keep going untill they get it all. There could be a a need for skin grafts/ transplants depending on the amount of tissue removal. I was lucky even after having a peice af flesh the size of a small mobile ph removed there was still enough strech in my stomach to pull it all together and stitch it up. 

If you havent already doneit, I suggest you tap on the heading Discussion Boards and have a read of the other posts about dfsp.  I will check in again in a day or two to see if you have been back.

 Bestwishes 

Natalie.

 

Hi Natalie, What you said was good info. I had the Mohs surgery last year and it was a big one. The area removed was about 3.5 inches in an oval shape on the top of my head. They even scraped my skull all while I was awake. It took some skin graphs and pulling skin together by the plastic surgeon to finish it all. I ended up with a bald spot on my head and I have to get checked every 6 months now. I wish I why these occur. Is it the from the sun or what. Frank

natmcg said:

Hi Frank

 

I hope your recovery is going well. Six monthly checkups are the normal way to go  after mohs. I have past the 2yr make since my mohs surgery and am on yearly checkups. I still experience pain in and around my scar from time to time, but the Dr.says that can keep occuring for around 5yrs and it is related to nerves recovery.  In rregards to why this skin cancer happenes.  Well they dont know for sure.  But it is known  that it is NOT a sun related skin cancer. Its  spindle sarcoma and starts under  the top layers of skin in the dermas, hense the name. Lucky for us its not a sun related cancer because that can be much harder to treat if not caught early. 

 

 

Hope things are going well,

 

 

Kind regards

 

 

Natalie

Hi Natalie,

Thanks for the info and kind words. My DFSP hasnt returned as far as the docs can see but I get extreem headaches in the scalp area. Im not sure if it was from the surgery and them having to pull back my scalp and pull it together to try and close as much of the large spot they removed or not but its no fun. My wife really helped me through these tough times but shortly after my surgery her breast cancer returned and she passed away. I took care of her myself until the end and havent really felt well since. Life can be really difficult sometimes. I wish we were alerted when someone was repsonding to our messages on here because I dont know for sure. Frank

Hi,

I am wondering how to prepare for my consult with oncology surgeon on Monday. I went to dermatologist June 22, 2016 to have scar/bump removed from my leg. Only because I thought it was ugly. I had been told it was nothing years before so never worried about it. Dermatologist said it did look odd, but otherwise seemed nonchalant and said he could remove it. I didn’t even think to take a "before" picture.  Then I got the call on July 5th to come in and discuss it being a rare form of cancer. Everything doctors said kinda went in one ear and out the other.  So now that it has sunk in, I want to be prepared for next appointment. Any suggestions would be appreciated. Thank you all for sharing your stories!

I'm new and would really rather not be here....however I'm sure that applies to all of us. I found out last week that a "cyst" removed from back turned out to be some random and rare cancer (dfsp). My general surgeon referred me to a plastics specialist and I see her next week.  The general surgeon mentioned reconstruction and skin grafting as the reason for the plastic surgeon.  I have a lot of questions, mostly has it spread?  I had the lump for years before getting it out.    This thread goes back quite aways and I wondered, are all of the posters still around (If that's not too morbid to ask.) I was also curious, because it is such a rare cancer, should I be looking for a doctor with experience with this or does the surgical technique (mohs I am guessing) not really require special knowledge of the cancer and more so the technique?  I live in Canada but will travel! This is not my first cancer but the first time for this type and I'm a little aprehensive.

Also, if you have any tips/thoughts/helpful suggestions/adviceIwould super appreciate it.  Thanks!

Flysloan said:

Un-Happy New Year

I'm new and would really rather not be here....however I'm sure that applies to all of us. I found out last week that a "cyst" removed from back turned out to be some random and rare cancer (dfsp). My general surgeon referred me to a plastics specialist and I see her next week.  The general surgeon mentioned reconstruction and skin grafting as the reason for the plastic surgeon.  I have a lot of questions, mostly has it spread?  I had the lump for years before getting it out.    This thread goes back quite aways and I wondered, are all of the posters still around (If that's not too morbid to ask.) I was also curious, because it is such a rare cancer, should I be looking for a doctor with experience with this or does the surgical technique (mohs I am guessing) not really require special knowledge of the cancer and more so the technique?  I live in Canada but will travel! This is not my first cancer but the first time for this type and I'm a little aprehensive.

Also, if you have any tips/thoughts/helpful suggestions/adviceIwould super appreciate it.  Thanks!

I had a lump on my back.  I went to my dermatologist and he did the biopsy and it came back as DFSP.  He removed it with large margins and I didn't have to have any skin grafts or anything.  My margins were clear so I was all good.  My followup:  I had to go to yearly skin checks for 3 years then 3 years after, he also sent me for a lung xray because of the location and prox to my lungs.  

I haven't had a recurrance but I am always on the look out.  I hope you have a similar experience with your DFSP.

Vansh04 said:

Hi Flysloan,

Hi Flysloan,

I"m also up in Canada and just discovered that I have dfsp too. I've had this "mole" on my back for about 3-4 years all it's never been a concern. I had the mole removed 2 weeks ago and the report came back that another procedure is required as all the edges were not clear. The plastic surgeon who conducted the surgery is confident he can do it, however I have requested a referral to the moh's clinic in Toronto as I do not want to take any chances. I'm hoping they will see me as it appears this surgery has better results. I would rather be seen by a specialist in such a scenario. Where abouts are you in Canada? 

 

Hello to the new members.

I've not been on here in quite some time.  Vansh04 reached out to me yesterday so I thought I'd jump on and poke around abit.  I can see my friend Nat has visited as well...hey you!

Looks like more and more Canadians are on here as well.  My advise to those near Toronto is to get in touch with the skin cancer clinic at Mount Sinai Hospital.  They are considered the "mecca" for soft tissue sarcomas (STS). Get hooked up with a specialist there.  They will screen and monitor you accordingly. Dermos typically don't unless they are well versed in this type of cancer.  Not too many are and even less on the general surgeon side. The other advantage is if you need further treatment or procedures the whole team is there.  Plastic surgeons play a huge part, as you have probably read by now, due to the local agressiveness of the cancer.  There are tentacles/finger like roots that can grow varying distances from the primary tumor.  This is the challenging part and will dictate the size of your wound and whether you require grafting.  Moh's is preferred as it tries to save as much "good tissue" as possible.  Wide excision is based on statistics and the experience of your surgeon.  I was to have Moh's, then they decided WLE and the surgeon took less than the guidelines to which he gave no explanation (Womens College). Not being satisfied with this I reached out to Mount Sinai.

I started with 3 mon visits, then 6 six mon visits.  I will hit the 5 year mark this November and will go yearly.  I also see my dermatologist yearly to have the overall skin check. I would also advise that you ask for a copy of all your pathology reports.  There is lots of info in them and if you show an understanding of them you will get your questions answered in much more detail. Again for me, peace of mind.

Do know that there is a very very low death rate with this cancer.  Just stay on top of your health.  You know when things aren't right. Be your own advocate. 

Best of luck...Jo

AK83 said:

Dermatofibrosarcoma Protuberans - recurrence.

Hi. I am from Denmark, Scandinavia. I was diagnosed with Dermatofibrosarcoma Protuberans in the upper abdominal area in 2005. I just underwent surgery in the same area for the second time, because the cancer had returned after all these years. They removed a large area of skin tissue and the upper part of the muscle too like last time at the hospital under full anesthesia. They did not call it the Mohs procedure, but "just" surgery, but they did check the removed tissue under microscope afterwards informing me that all the cancer is gone (like last time; "clear margins") - for now, and that they will do follow-ups every 6 months for the next five years. And that's it. I am finding it hard to consider myself cancerfree, since they told me I was cancerfree back in 2005 after surgey, and now again in 2017, they tell me the same thing even though it came back. And I can tell from your comments in here, that since this cancer has a high recurrence rate, I should consider myself "lucky", that so many years went by before it recurred. Though this cancer recurred in the same area, I am starting to see "shadows" in completely different areas on my skin and I am having them checked at a Dermatologist and will ask to have biopsies made of anything suspicious-looking. Does anybody know if this type of cancer can recur in completely different places than the first time(s)? Hope someone can answer. I thought it would be helpful to share in this community, since this type of cancer is so rare. It is hard to find people in the same boat, and similarly hard to find Doctors who are familiar with this type of cancer. 

Good Morning AK83...

Recurrence is very common.  Not sure what you have read but this type of cancer is "locally" aggressive.  The reason for this is that the primary tumor  produces tentacles or finger like projections that can travel some distance away from the tumor.  Consider how small these cell are and how difficult is would be to "get" them all.  You just need one to begin the growth again.  Some people have had regrowths 15 or 20 years later.  Its a slow growing cancer.

Generally the regrowth is contained to the same site.  I have read a couple of medical articles where a patient has multiple sites, but this is extremely rare.  Always be diligent and as you said if something look suspicious see your doctor.

I would highly suggest you get in touch with a sarcoma specialist to manager this cancer rather an a dermotologist.  Your tumor, like mine, is deep seated with muscle involvement.  Thats more serious, has a high rate of recurrence and needs to be managed properly. I've said it over and over on here.  This cancer is a soft tissue sarcoma of the skin.  Very different that a typical sun related skin cancer.  I encourage you to find a specialist. Dermos are the front line of diagnosing this as we see a bump on our skin and we get sent to them.  DFSP needs to be managed by a soft tissue sarcoma specialist.

Try googling STS doctors or centres in your area.

Best of Luck 

Hi. I am from Denmark, Scandinavia. I was diagnosed with Dermatofibrosarcoma Protuberans in the upper abdominal area in 2005. I just underwent surgery in the same area for the second time, because the cancer had returned after all these years. They removed a large area of skin tissue and the upper part of the muscle too like last time at the hospital under full anesthesia. They did not call it the Mohs procedure, but "just" surgery, but they did check the removed tissue under microscope afterwards informing me that all the cancer is gone (like last time; "clear margins") - for now, and that they will do follow-ups every 6 months for the next five years. And that's it. I am finding it hard to consider myself cancerfree, since they told me I was cancerfree back in 2005 after surgey, and now again in 2017, they tell me the same thing even though it came back. And I can tell from your comments in here, that since this cancer has a high recurrence rate, I should consider myself "lucky", that so many years went by before it recurred. Though this cancer recurred in the same area, I am starting to see "shadows" in completely different areas on my skin and I am having them checked at a Dermatologist and will ask to have biopsies made of anything suspicious-looking. Does anybody know if this type of cancer can recur in completely different places than the first time(s)? Hope someone can answer. I thought it would be helpful to share in this community, since this type of cancer is so rare. It is hard to find people in the same boat, and similarly hard to find Doctors who are familiar with this type of cancer. 

You are most welcome.  I had a hard time with the lack of information I was getting from my doctors so I did a lot of research and reading on my own.  Mostly medical articles.  A recurrence does put you in another bracket in my opinion.  Did you have any other screening...MRI/chest scan.  This type of cancer typically goes to the lungs if its going to spread.  I would insist on a chest scan since you've had a recurrence and you have muscle involvement.  This is considered deep seated and needs to be monitored. 

No doctor can guarantee that there will not be a recurrence.  They can only predict based their surgical plan and resulting pathology reports. This is why you need to be screened closely for the next five years and then annually after that.

We are very lucky in Canada as we have access to specialist through our public health care system.  Mount Sinai and Princess Margaret hospitals in Toronto are the best in Canada.  PMH is dedicated to cancer treatment and MS is the "mecca" for sarcoma.  Sarcoma is very tricky and very rare. 1% of all cancers and DFSP is 1% of that group. DFSP has a very low metastic rate and lower death rate so we are lucky for that.

Its important you find a doctor that you feel 100% confident in.  Once you have that, the stress level will go down.  You can also ask for your pathology reports.  I found that helpful for me, the more information I had in hand the stronger I felt.

Keep me posted Anne...Joanne