Dermatofibrosarcoma protuberans (DFSP)

silena

RebeccaSchuster said:

Surgery
Hi Kite,

It's interesting about your story because my DFSP is directly below my collarbone as well. It's been there since about 2003 and finally went and got a biopsy. Long story short I saw a surgical oncologist that was incredibly nonchalant and rude so I went to City of Hope in Southern California for a second opinion. They see about 15-20 cases of DFSP a year and the whole hospital is incredible! They treat their patients with dignity and respect and provide compassionate care. My surgery is scheduled for the 27th of this month. It's funny that you say they were worried about it on your bones. I'm experiencing an increased amount of pain on my collarbone lately and it's really scaring me. Before I read your post I was wondering if it was even possible for it to get to the bone. The initial biopsy area was pretty small at approximately 2 cm. As you said this area is difficult to excise because of the lack of elasticity. It will be interesting to see how much they end up having to take. I'm still having a considerable amount of pain and am just anxious to get this over with. It's the unknown factor that's scary in all of this. The doctor doesn't know how much he's going to have to take and have no idea what I'm going to wake up with. :-\ Thanks so much for sharing your story!

-R

DFSP of Scalp
Hi everyone! I'm 28 years old and I was diagnosed this year (July 2009) with DFSP, and had my surgery in August..
I had Mohs done. They took out the tumor mass and an additional 1cm all around it. This left me with a circle of 6 cm in my scalp. Large defects of scalp are difficult for reconstruction because of lacking of local tissues so, during the surgery a Tissue expander was inserted and then inflated. 72 days later the expander was removed (28/10/2009) and the expanded flap rotated advanced into the defect.
I opted against the Mohs procedure to avoid any further surgeries and I was right because the results came back with negative margins.
Since this week I no longer needed to wear a hairpiece or head scarf to go out !!!

Sil

Unknown

silena said:

DFSP of Scalp
Hi everyone! I'm 28 years old and I was diagnosed this year (July 2009) with DFSP, and had my surgery in August..
I had Mohs done. They took out the tumor mass and an additional 1cm all around it. This left me with a circle of 6 cm in my scalp. Large defects of scalp are difficult for reconstruction because of lacking of local tissues so, during the surgery a Tissue expander was inserted and then inflated. 72 days later the expander was removed (28/10/2009) and the expanded flap rotated advanced into the defect.
I opted against the Mohs procedure to avoid any further surgeries and I was right because the results came back with negative margins.
Since this week I no longer needed to wear a hairpiece or head scarf to go out !!!

Sil

Surgery Completed
Hello! I thas been a while since I have posted, but I did want to let you know that I had my 7cm tumor removed with Mohs last Monday; the defect ended up being 7 by 12; I saw a photo of it today and I am amazed that they were able to put me back together without a skin graft. Right below the throat, and spreading into the left upper chest and leaning on a muscle, the physicians were not sure what they would find; but they did a phenomenal job and I am glad I followed my heart and mind and found physicians who would do the Mohs surgery, which I think was best for me; but we each must choose what is best for ourselves based on the particular medical indications at the time. We need to advocate for accurate information so we can make the best choices for ourselves.

I had a follow-up today and will have another in three weeks. I will return to work then.

I wish all of you the best in finding the right physicians and in getting the right info on this disease. As I had mentioned, this tumor was growing for about 20 years and I had doctors laugh at me, disregard me, or simply seem puzzled.

Sil, I am happy that the expander worked well for you and glad that your margins are clear! As many of you have said, getting the right diagnosis and the right physicians makes a big difference in the experience and outcome.

Thanks to everyone for sharing their experiences. I have found this to be beneficial and also hope that my experience can benefit others.

Take care. Happy Holidays.

JC

bstar

unknown said:

Surgery Completed
Hello! I thas been a while since I have posted, but I did want to let you know that I had my 7cm tumor removed with Mohs last Monday; the defect ended up being 7 by 12; I saw a photo of it today and I am amazed that they were able to put me back together without a skin graft. Right below the throat, and spreading into the left upper chest and leaning on a muscle, the physicians were not sure what they would find; but they did a phenomenal job and I am glad I followed my heart and mind and found physicians who would do the Mohs surgery, which I think was best for me; but we each must choose what is best for ourselves based on the particular medical indications at the time. We need to advocate for accurate information so we can make the best choices for ourselves.

I had a follow-up today and will have another in three weeks. I will return to work then.

I wish all of you the best in finding the right physicians and in getting the right info on this disease. As I had mentioned, this tumor was growing for about 20 years and I had doctors laugh at me, disregard me, or simply seem puzzled.

Sil, I am happy that the expander worked well for you and glad that your margins are clear! As many of you have said, getting the right diagnosis and the right physicians makes a big difference in the experience and outcome.

Thanks to everyone for sharing their experiences. I have found this to be beneficial and also hope that my experience can benefit others.

Take care. Happy Holidays.

JC

JC I'm pleased to hear you were able to get your Mohs surgery and the surgeons were able to
as you say: "put you back together without a skin graft".That in itself saves you from some procedures which are more invasive and can add complications to the surgery.My story is
written above entitled simply "Mohs" 10 Nov 2009 I wish you well and all others here who have experienced a similar traumatic experience of this nature.

I know first hand what its like to take that first deep breath and sigh of relief after the surgery is completed,you return home,you've come through it,you're now a survivor.

Best Regards and likewise "Happy Holidays"
bstar

Unknown

bstar said:

JC I'm pleased to hear you were able to get your Mohs surgery and the surgeons were able to
as you say: "put you back together without a skin graft".That in itself saves you from some procedures which are more invasive and can add complications to the surgery.My story is
written above entitled simply "Mohs" 10 Nov 2009 I wish you well and all others here who have experienced a similar traumatic experience of this nature.

I know first hand what its like to take that first deep breath and sigh of relief after the surgery is completed,you return home,you've come through it,you're now a survivor.

Best Regards and likewise "Happy Holidays"
bstar

Thanks
Hi bstar!

Thanks for your comments and good wishes. And, yes, it is good to be on the other side and a 'survivor'.

It is surely hard to live with the physical and emotional scars. I think we are blessed to be living in a time when we can have this cancer treated with or without grafts. It is important to have whatever treatment we need and to be able to find physicians who can do the best to implement that treatment. Like the rest of you, I will be screened for many (10) years and will continually work towards helping to further research and understanding of rare cancers such as DFSP. We also need to work toward getting it diagnosed much earlier, which would make it more manageable physically and mentally. I am a 56 year old grandmother and I interact with thousands of people each day at work. It can be tough.

In terms of physical scars, not only are they painful, but you are right that others do not know how to respond to them. My husband of nearly 25 years and my 23 year old daughter tell me that the huge tumor was worse so I should be happy to have this scar and not the other deformity, which was cancerous. My friend said that I should wear the scars as a badge of courage. They are correct, of course; as hard as it is (and I realize that my scars are in the neck, upperchest and breast area, and not on my face) I won't be wearing my swimsuit like I used to. Frankly, I used to get very strange looks from people when they saw the lump on my chest; it was visible if I wore any type of v-neck shirt, etc. It is hard and I am very sorry that people are so rude. I keep joking that my bikini days are over anyway; but it is hard. (My 22 year old and 17 year old did not want to see the picture of the 12 x 7 defect; I respected that. The physician did not show me the detailed photos of the reconstruction; and I am going to wait a bit until I ask to see them.)

As a professional philosopher whose area of specialization is ethics in health care, I have often studied patient abandonment in illness, both physical and emotional; frankly, I have often felt abandoned after the many years of searching for an accurate diagnosis of this illness. No one ever mentioned cancer to me. The first physician who diagnosed me as having DFSP this year first misdiagnosed me; when the correct diagnosis was found, she said she was unfamiliar with this cancer. Something in me told me to do some research on it, and I did. That led me to the physicians who did the surgery recently. I called my GP, friends in health care and anyone I could think of who might be able to make a recommendation to me.

Illness in general, and cancer in particular, makes one vulnerable. I don't know how I am going to do it, exactly, but I hope to make the rarer cancers come to the forefront of discussions on cancer. We need to know more and understand more; and we need to find, and lend, support to others who 'fall through the cracks' as we have. Earlier detection and earlier treatment means better results of all sorts, including physical, emotional, and financial.

I am happy to have found this discussion board this year and hope I can be of assistance and support as a member.

Take care.

JC

Keri Roo

unknown said:

Thanks
Hi bstar!

Thanks for your comments and good wishes. And, yes, it is good to be on the other side and a 'survivor'.

It is surely hard to live with the physical and emotional scars. I think we are blessed to be living in a time when we can have this cancer treated with or without grafts. It is important to have whatever treatment we need and to be able to find physicians who can do the best to implement that treatment. Like the rest of you, I will be screened for many (10) years and will continually work towards helping to further research and understanding of rare cancers such as DFSP. We also need to work toward getting it diagnosed much earlier, which would make it more manageable physically and mentally. I am a 56 year old grandmother and I interact with thousands of people each day at work. It can be tough.

In terms of physical scars, not only are they painful, but you are right that others do not know how to respond to them. My husband of nearly 25 years and my 23 year old daughter tell me that the huge tumor was worse so I should be happy to have this scar and not the other deformity, which was cancerous. My friend said that I should wear the scars as a badge of courage. They are correct, of course; as hard as it is (and I realize that my scars are in the neck, upperchest and breast area, and not on my face) I won't be wearing my swimsuit like I used to. Frankly, I used to get very strange looks from people when they saw the lump on my chest; it was visible if I wore any type of v-neck shirt, etc. It is hard and I am very sorry that people are so rude. I keep joking that my bikini days are over anyway; but it is hard. (My 22 year old and 17 year old did not want to see the picture of the 12 x 7 defect; I respected that. The physician did not show me the detailed photos of the reconstruction; and I am going to wait a bit until I ask to see them.)

As a professional philosopher whose area of specialization is ethics in health care, I have often studied patient abandonment in illness, both physical and emotional; frankly, I have often felt abandoned after the many years of searching for an accurate diagnosis of this illness. No one ever mentioned cancer to me. The first physician who diagnosed me as having DFSP this year first misdiagnosed me; when the correct diagnosis was found, she said she was unfamiliar with this cancer. Something in me told me to do some research on it, and I did. That led me to the physicians who did the surgery recently. I called my GP, friends in health care and anyone I could think of who might be able to make a recommendation to me.

Illness in general, and cancer in particular, makes one vulnerable. I don't know how I am going to do it, exactly, but I hope to make the rarer cancers come to the forefront of discussions on cancer. We need to know more and understand more; and we need to find, and lend, support to others who 'fall through the cracks' as we have. Earlier detection and earlier treatment means better results of all sorts, including physical, emotional, and financial.

I am happy to have found this discussion board this year and hope I can be of assistance and support as a member.

Take care.

JC

Just Diagnosed
Hi everyone. I was just diagnosed two days ago with DFSP. I had a small bump on the back of my left shoulder for probably 2.5 years and went to see my family Dr. to refer me to a Dermatologist and she said that she wouldn't because they wouldn't remove it. I have since switched family doctors because I wasn't impressed with her. My new doctor refered me right away to a general surgeon. The surgeon didn't think it was anything to worry about but said he would remove it if I was anxious about it. Two weeks later when I went back to get my stitches removed he kinda hit me with this big long name (DFSP) and said that he was getting a second opinion. He didn't say 'Cancer' right away, just that it was pretty serious. When I went back (2 days ago) for the second opinion he said it was a rare type of skin cancer and he needed to go back and remove the rest of it with wide exertion, and then it would be gone and I wouldn't need to have check-ups or anything. He also said that he wouldn't see another case for 10 years. After going home and researching it myself his information doesn't seem acurate. I went back yesterday to see my family dr. to refer me to an Oncologist and to get a CT Scan to see if it has spread. I feel like I have more knowledge from a google search then both my surgeon and family doctor. They also don't have a sense of urgency with it - but maybe I do because I'm a little freaked out, and confused. I have a scheduled appt. with the surgeon for Jan. 14 but asked him to refer me to a MOHS specialist which is out of province (so I don't know how long that will take!). Thank you for all of your stories and information. It helps.

bstar

unknown said:

Thanks
Hi bstar!

Thanks for your comments and good wishes. And, yes, it is good to be on the other side and a 'survivor'.

It is surely hard to live with the physical and emotional scars. I think we are blessed to be living in a time when we can have this cancer treated with or without grafts. It is important to have whatever treatment we need and to be able to find physicians who can do the best to implement that treatment. Like the rest of you, I will be screened for many (10) years and will continually work towards helping to further research and understanding of rare cancers such as DFSP. We also need to work toward getting it diagnosed much earlier, which would make it more manageable physically and mentally. I am a 56 year old grandmother and I interact with thousands of people each day at work. It can be tough.

In terms of physical scars, not only are they painful, but you are right that others do not know how to respond to them. My husband of nearly 25 years and my 23 year old daughter tell me that the huge tumor was worse so I should be happy to have this scar and not the other deformity, which was cancerous. My friend said that I should wear the scars as a badge of courage. They are correct, of course; as hard as it is (and I realize that my scars are in the neck, upperchest and breast area, and not on my face) I won't be wearing my swimsuit like I used to. Frankly, I used to get very strange looks from people when they saw the lump on my chest; it was visible if I wore any type of v-neck shirt, etc. It is hard and I am very sorry that people are so rude. I keep joking that my bikini days are over anyway; but it is hard. (My 22 year old and 17 year old did not want to see the picture of the 12 x 7 defect; I respected that. The physician did not show me the detailed photos of the reconstruction; and I am going to wait a bit until I ask to see them.)

As a professional philosopher whose area of specialization is ethics in health care, I have often studied patient abandonment in illness, both physical and emotional; frankly, I have often felt abandoned after the many years of searching for an accurate diagnosis of this illness. No one ever mentioned cancer to me. The first physician who diagnosed me as having DFSP this year first misdiagnosed me; when the correct diagnosis was found, she said she was unfamiliar with this cancer. Something in me told me to do some research on it, and I did. That led me to the physicians who did the surgery recently. I called my GP, friends in health care and anyone I could think of who might be able to make a recommendation to me.

Illness in general, and cancer in particular, makes one vulnerable. I don't know how I am going to do it, exactly, but I hope to make the rarer cancers come to the forefront of discussions on cancer. We need to know more and understand more; and we need to find, and lend, support to others who 'fall through the cracks' as we have. Earlier detection and earlier treatment means better results of all sorts, including physical, emotional, and financial.

I am happy to have found this discussion board this year and hope I can be of assistance and support as a member.

Take care.

JC

Thankyou JC
It was reassuring to read your post,it was the first one I've received and was very welcomed.
Your points and comments were well taken,there definetly needs to be more info put out there
in general for these rare cancers such as DFSP. A good example is the post I just responded to today Dec 16 to a person who was diagnoed just 2 days ago and is looking for answers in which direction to proceed because often family Physicians are as unfamiliar with DFSP as we the patience are. On a personal note I am well and have taken my life back...anyone who
has gone through the Trauma of Cancer knows exactly what I mean by taking your life back.
The physical scars are seen but the emotional ones go deep and a support group like this to
"Just Talk" and vent is very helpful because we tend to keep a lot inside and we know that
only someone who's experienced the same thing has any idea what it feels like,the dark days,
the dispair.I'm happy to say the sky is blue and the grass is green for me again
Take Care, I appreciated your words

bstar

bstar

Keri Roo said:

Just Diagnosed
Hi everyone. I was just diagnosed two days ago with DFSP. I had a small bump on the back of my left shoulder for probably 2.5 years and went to see my family Dr. to refer me to a Dermatologist and she said that she wouldn't because they wouldn't remove it. I have since switched family doctors because I wasn't impressed with her. My new doctor refered me right away to a general surgeon. The surgeon didn't think it was anything to worry about but said he would remove it if I was anxious about it. Two weeks later when I went back to get my stitches removed he kinda hit me with this big long name (DFSP) and said that he was getting a second opinion. He didn't say 'Cancer' right away, just that it was pretty serious. When I went back (2 days ago) for the second opinion he said it was a rare type of skin cancer and he needed to go back and remove the rest of it with wide exertion, and then it would be gone and I wouldn't need to have check-ups or anything. He also said that he wouldn't see another case for 10 years. After going home and researching it myself his information doesn't seem acurate. I went back yesterday to see my family dr. to refer me to an Oncologist and to get a CT Scan to see if it has spread. I feel like I have more knowledge from a google search then both my surgeon and family doctor. They also don't have a sense of urgency with it - but maybe I do because I'm a little freaked out, and confused. I have a scheduled appt. with the surgeon for Jan. 14 but asked him to refer me to a MOHS specialist which is out of province (so I don't know how long that will take!). Thank you for all of your stories and information. It helps.

DFSP
Keri Roo:
Coinsidence or ? I have'nt checked this site for quite awhile but this afternoon as its snowing here in NW B.C.and a quiet day something promped me to check in.I've been through
it and will share what I know with you. Read my posts above,I posted a few times and you can
glean some info. I had my Mohs done in Vancouver Aug 31 09 and the reconstruction Sept.1 09
Mohs is the best procedure,it leaves less to chance,research it on the net,look at the followup reports afterwards and it won't take too long for you to realize this is the way to go for DFSP. My DFSP "WAS" on my left cheek and like you diagnosis took awhile because
of it being rare. I endured a lot but it was worth it,I'm a survivor and I've resumed my
life as I knew it dispite a large Flap skin graft on my left cheek.Take courage you and the doctors can beat this. You mentioned "out of Province" so obviously you are in Canada. I can give you names and phone numbers in Vancouver if that is helpful to you. There are some very fine Surgeons doing Mohs every day of the week at VGH its their specialty.Also,my reconstructive surgeon is at the top of his game and a very well respected surgeon on the west coast.My case may be more extreme than yours but never the less getting the right Surgeons in place is important ones that are familiar with DFSP.Your case sounds typical of so many I've read, a lump,had it for years,maybe a Cyst,surgicly removed,Biopsy in the Lab showed DFSP, Doctors not familiar with it and sometimes don't know what to say.This is why websites like this one were created.
Good news for you, it rarely Matastizes and is usually localized to the known area...But you
do need to get the right procedure done and remove it with Mohs because if not removed properly it can return,its noted for that,in other words do the surgery once but do it right.
I had my 3 month after surgery Dr. Visit and he was very pleased,the pathology report was
a complete success (sigh of relief).
Keep in touch okay.

bstar

Keri Roo said:

Just Diagnosed
Hi everyone. I was just diagnosed two days ago with DFSP. I had a small bump on the back of my left shoulder for probably 2.5 years and went to see my family Dr. to refer me to a Dermatologist and she said that she wouldn't because they wouldn't remove it. I have since switched family doctors because I wasn't impressed with her. My new doctor refered me right away to a general surgeon. The surgeon didn't think it was anything to worry about but said he would remove it if I was anxious about it. Two weeks later when I went back to get my stitches removed he kinda hit me with this big long name (DFSP) and said that he was getting a second opinion. He didn't say 'Cancer' right away, just that it was pretty serious. When I went back (2 days ago) for the second opinion he said it was a rare type of skin cancer and he needed to go back and remove the rest of it with wide exertion, and then it would be gone and I wouldn't need to have check-ups or anything. He also said that he wouldn't see another case for 10 years. After going home and researching it myself his information doesn't seem acurate. I went back yesterday to see my family dr. to refer me to an Oncologist and to get a CT Scan to see if it has spread. I feel like I have more knowledge from a google search then both my surgeon and family doctor. They also don't have a sense of urgency with it - but maybe I do because I'm a little freaked out, and confused. I have a scheduled appt. with the surgeon for Jan. 14 but asked him to refer me to a MOHS specialist which is out of province (so I don't know how long that will take!). Thank you for all of your stories and information. It helps.

Background info:
Keri Roo: I beleive I need to comment on the normal procedure with Mohs Micrographic surgery.
In most cases it is performed in the Surgeons own office. The area involved is marked out and
he begins his procedure of making a grid pattern. A local anestetic is given and basiclly Biopsy samples are taken and analized in real time in his own Lab. which is in his office by his technicians and himself.
Biopsy's are taken and analized until the all clear margin is established. The Biopsy sessions
can be as few as one or two maybe three depending on the area involved.After this the area is sutured closed and you can go home again. Normally it is not a long drawn out procedure just the wait time between Biopsy Lab. session while the testing is done make it longer. I thought this might help you to understand Mohs Micrographic Surgery. This procedure is done on the Microscopic level which is far better than just wide excising with a standard safety margin. This insures only the necessary soft tissue involved to taken and nothing else.
In my case it took four sessions because of the size of the area involved and being on my face
it required reconstructive surgery to close up the area using a skin graft.This involved
a team of doctors specialized in plastic surgery and I was admitted to the Hospital directly
after completing the Mohs Surgery. This was all preplanned,these Doctors are Specialists and
know exactly what is coming next.
I hope this helps you.What I went through was the exception rather than the rule,most patients
I saw and talked to while having Mohs done were in and out within a few hours and that was that. Take Care,and all the best with this okay.

Zooki

bstar said:

Thankyou JC
It was reassuring to read your post,it was the first one I've received and was very welcomed.
Your points and comments were well taken,there definetly needs to be more info put out there
in general for these rare cancers such as DFSP. A good example is the post I just responded to today Dec 16 to a person who was diagnoed just 2 days ago and is looking for answers in which direction to proceed because often family Physicians are as unfamiliar with DFSP as we the patience are. On a personal note I am well and have taken my life back...anyone who
has gone through the Trauma of Cancer knows exactly what I mean by taking your life back.
The physical scars are seen but the emotional ones go deep and a support group like this to
"Just Talk" and vent is very helpful because we tend to keep a lot inside and we know that
only someone who's experienced the same thing has any idea what it feels like,the dark days,
the dispair.I'm happy to say the sky is blue and the grass is green for me again
Take Care, I appreciated your words

bstar

Newly diagnosed.
I appreciate reading all of these replies regarding DFSP. I was diagnosed last month after constantly complaining about what had started out as a small bump on my lower back against my spine for yrs. My doc was insistant that it was nothing more than a fatty cyst and refused to refer me to a dermatologist. That was off and on for over 10 yrs. Well, 2 yrs ago, the lump went crazy and doubled in size and then turned into 2 lumps. I went back to my doc and he said the same thing. Two fatty cysts. Then after the birth of my 4th son the area got bigger and suddenly there were multiple small rice crispy like lumps spreading away from the two larger lumps and it changed color, looking like a big bruise. I went back to my doc in Oct of this yr and he STILL insisted it had to be fatty cysts that I'd bruised. That was the last straw. How could I not know if I bruised my back that bad? The area in question has a visible bruise like 3 inches wide and about 1 to 1 and a half inches long. I think I'd notice if I'd hurt myself that bad! I demanded to see a dermatologist after my doc finally confessed he had no idea what the bruise was.

The derm. immediately did a biopsy and when they got the results, they turned around and sent it off to another lab in UCSF (I'm in TN) for confirmation. 2 wks later I was told it was DFSP.

I'm scheduled for Mohs surgery on Jan 27th and I'm also scheduled for plastic/reconstructive surgery the same day, after the procedure. I'm trying hard not to freak out over this. I have no idea what to expect when they go in. I'm worried because not only is the visible area at least 3 inches wide meaning who knows how big the deficit will be, but it's against my spine and I worry about the chances of it invading spinal tissue. With my visible affected area being about 3 inches wide/1+ inch long, what are my chances that they will have to do a skin graft?

bstar

Zooki said:

Newly diagnosed.
I appreciate reading all of these replies regarding DFSP. I was diagnosed last month after constantly complaining about what had started out as a small bump on my lower back against my spine for yrs. My doc was insistant that it was nothing more than a fatty cyst and refused to refer me to a dermatologist. That was off and on for over 10 yrs. Well, 2 yrs ago, the lump went crazy and doubled in size and then turned into 2 lumps. I went back to my doc and he said the same thing. Two fatty cysts. Then after the birth of my 4th son the area got bigger and suddenly there were multiple small rice crispy like lumps spreading away from the two larger lumps and it changed color, looking like a big bruise. I went back to my doc in Oct of this yr and he STILL insisted it had to be fatty cysts that I'd bruised. That was the last straw. How could I not know if I bruised my back that bad? The area in question has a visible bruise like 3 inches wide and about 1 to 1 and a half inches long. I think I'd notice if I'd hurt myself that bad! I demanded to see a dermatologist after my doc finally confessed he had no idea what the bruise was.

The derm. immediately did a biopsy and when they got the results, they turned around and sent it off to another lab in UCSF (I'm in TN) for confirmation. 2 wks later I was told it was DFSP.

I'm scheduled for Mohs surgery on Jan 27th and I'm also scheduled for plastic/reconstructive surgery the same day, after the procedure. I'm trying hard not to freak out over this. I have no idea what to expect when they go in. I'm worried because not only is the visible area at least 3 inches wide meaning who knows how big the deficit will be, but it's against my spine and I worry about the chances of it invading spinal tissue. With my visible affected area being about 3 inches wide/1+ inch long, what are my chances that they will have to do a skin graft?

Diagnosis
Zooki: Your story was well worth sharing. It seems to be common for physicians to misdiagnose DFSP and they most likely have never heard of it.What is so sad and aggravating is they should be refering their patients to a dermatologists when they don't know what it is they are looking at and they are failing us in that way.A Dermatologist is specialized in the field and knows often just by appearance what is involved and will do the necessary tests.

You are now in the right hands,Mohs surgeons and reconstructive surgeons and thats where you need to be, not back there worrying and being shrugged off.How many times I've heard someone
say they went with their instincts and they were right,but we also tend to trust a doctors opinion,they are the doctors and suppose to know,right, but with rare things like DFSP not so.

About skin grafts, you don't know yet if this will be required,there are several technics that
are used to close the area.Never the less with plastic surgery these days skin grafts are
used but very succesfully. I did'nt have one suture in my face or left upper leg (Donar area)
and everything healed up nicely for me,thats the beauty of plastic surgery.

I wish you well my friend,keep in touch,I will be thinking of you and also Kerri Roo, and JC
who I've posted comments with as well.We can benefit each other through experience,knowledge,
and our comments,who better to speak out from a laymans point of view than someone whose been there already.

-bstar-

Unknown

bstar said:

Thankyou JC
It was reassuring to read your post,it was the first one I've received and was very welcomed.
Your points and comments were well taken,there definetly needs to be more info put out there
in general for these rare cancers such as DFSP. A good example is the post I just responded to today Dec 16 to a person who was diagnoed just 2 days ago and is looking for answers in which direction to proceed because often family Physicians are as unfamiliar with DFSP as we the patience are. On a personal note I am well and have taken my life back...anyone who
has gone through the Trauma of Cancer knows exactly what I mean by taking your life back.
The physical scars are seen but the emotional ones go deep and a support group like this to
"Just Talk" and vent is very helpful because we tend to keep a lot inside and we know that
only someone who's experienced the same thing has any idea what it feels like,the dark days,
the dispair.I'm happy to say the sky is blue and the grass is green for me again
Take Care, I appreciated your words

bstar

Thanks
Hi bstar,

Thanks for your response. I know exactly what you mean by 'take back my life' and, as I have told my family and friends, I feel I have more spunk than ever!

I am glad that you are doing better; I look forward to our continued discussion.

Hoping you have a wonderful new year!

JC

Unknown

bstar said:

Background info:
Keri Roo: I beleive I need to comment on the normal procedure with Mohs Micrographic surgery.
In most cases it is performed in the Surgeons own office. The area involved is marked out and
he begins his procedure of making a grid pattern. A local anestetic is given and basiclly Biopsy samples are taken and analized in real time in his own Lab. which is in his office by his technicians and himself.
Biopsy's are taken and analized until the all clear margin is established. The Biopsy sessions
can be as few as one or two maybe three depending on the area involved.After this the area is sutured closed and you can go home again. Normally it is not a long drawn out procedure just the wait time between Biopsy Lab. session while the testing is done make it longer. I thought this might help you to understand Mohs Micrographic Surgery. This procedure is done on the Microscopic level which is far better than just wide excising with a standard safety margin. This insures only the necessary soft tissue involved to taken and nothing else.
In my case it took four sessions because of the size of the area involved and being on my face
it required reconstructive surgery to close up the area using a skin graft.This involved
a team of doctors specialized in plastic surgery and I was admitted to the Hospital directly
after completing the Mohs Surgery. This was all preplanned,these Doctors are Specialists and
know exactly what is coming next.
I hope this helps you.What I went through was the exception rather than the rule,most patients
I saw and talked to while having Mohs done were in and out within a few hours and that was that. Take Care,and all the best with this okay.

Mohs
Hi Keri Roo and bstar,

My MOHS was performed in a surgery room with the reconstructive surgeon present due to the size of the visible tumor -- 7 cm. This meant that I was asleep throughout the entire process, and most of my recovery time, which was fine. So, I didn't know when they were 'testing'. I did see a photo of the defect, which was 7 x 12, after the surgery and before reconstruction. I also stayed in the hospital for one night.

You are correct that Mohs is usually done in the office. I had hoped for that, but my tumor was too large. My surgery lasted 5 hours and I had 6 in recovery. So, the Mohs surgeons are best able to determine when and where it should be done.

I am grateful for Mohs and hope that you will find it to be as good a procedure as I did.

Best regards,
JC

Unknown

Zooki said:

Newly diagnosed.
I appreciate reading all of these replies regarding DFSP. I was diagnosed last month after constantly complaining about what had started out as a small bump on my lower back against my spine for yrs. My doc was insistant that it was nothing more than a fatty cyst and refused to refer me to a dermatologist. That was off and on for over 10 yrs. Well, 2 yrs ago, the lump went crazy and doubled in size and then turned into 2 lumps. I went back to my doc and he said the same thing. Two fatty cysts. Then after the birth of my 4th son the area got bigger and suddenly there were multiple small rice crispy like lumps spreading away from the two larger lumps and it changed color, looking like a big bruise. I went back to my doc in Oct of this yr and he STILL insisted it had to be fatty cysts that I'd bruised. That was the last straw. How could I not know if I bruised my back that bad? The area in question has a visible bruise like 3 inches wide and about 1 to 1 and a half inches long. I think I'd notice if I'd hurt myself that bad! I demanded to see a dermatologist after my doc finally confessed he had no idea what the bruise was.

The derm. immediately did a biopsy and when they got the results, they turned around and sent it off to another lab in UCSF (I'm in TN) for confirmation. 2 wks later I was told it was DFSP.

I'm scheduled for Mohs surgery on Jan 27th and I'm also scheduled for plastic/reconstructive surgery the same day, after the procedure. I'm trying hard not to freak out over this. I have no idea what to expect when they go in. I'm worried because not only is the visible area at least 3 inches wide meaning who knows how big the deficit will be, but it's against my spine and I worry about the chances of it invading spinal tissue. With my visible affected area being about 3 inches wide/1+ inch long, what are my chances that they will have to do a skin graft?

Hi Zooki,
It tends to be the
Hi Zooki,

It tends to be the case that it takes over 10 years to identify DFSP; and my physicians told me that even if surgery had been done prior to now, it most likely would have been ineffective if the surgeon didn't know the tumorous mass was DFSP.

It is always good to get second and third opinions, and I am glad you found someone who will do the Mohs. I have found that Mohs is a more precise surgery and that the surgeons are experts in this type of cancer, as bstar said. I didn't know what to expect, either, but I can tell you that they did a phenomenal job and took only what they needed to take; that is the great thing about Mohs.

Given the nature of DFSP, it is hard to know whether or not a skin graft is needed until they do the surgery. It will depend on how far they can stretch the skin. I, too, was worried and finally had to 'surrender' to the surgeons and God and also ask as many questions as I could. Empowering myself in any way I could helped me to get through the process.

I will keep you in my prayers and look forward to 'talking' with you again.


Sincerely,
JC

bstar

unknown said:

Thanks
Hi bstar,

Thanks for your response. I know exactly what you mean by 'take back my life' and, as I have told my family and friends, I feel I have more spunk than ever!

I am glad that you are doing better; I look forward to our continued discussion.

Hoping you have a wonderful new year!

JC

Followup Visits
Hi JC,

You mentioned a 3 week follow up visit. What have you been told in addition to this for future follow up? I'm comparing notes with you now because we are both fairly close in
time frame. My surgery was Sept/1/09 and first follow up Oct/8/09 (5 week later).
I was told to have my next follow up after 6 months which will be approx. April 2010

bstar

sarahmendenhall

bstar said:

Followup Visits
Hi JC,

You mentioned a 3 week follow up visit. What have you been told in addition to this for future follow up? I'm comparing notes with you now because we are both fairly close in
time frame. My surgery was Sept/1/09 and first follow up Oct/8/09 (5 week later).
I was told to have my next follow up after 6 months which will be approx. April 2010

bstar

DFSP in breast area
I was diagnosed with dfsp in my upper left breast area in 2004. I had to surgeries with 2cm clear margins and 33 radiation treatments. After having annual scans and being in the clear, it has now reappeared. The doctors seems scared about this because it is so rare to come back with clear margins and radiation. I am now facing a double masctectomy and Gleevac and I'm not even 30 years old yet! Now that I'm a mommy, I have to worry about my baby growing up watching me sick, not to mention, someone to take care of her while I recover. In 2006 my appendix was about to rupture so they removed in as an emergency surgery. From pathology, they found there was a carcinoid tumor in it. Has anyone else had DFSP with reoccurance after clear margins and radiation? Has anyone had DFSP and other unrelated cancers?

gaetanoarg

sarahmendenhall said:

DFSP in breast area
I was diagnosed with dfsp in my upper left breast area in 2004. I had to surgeries with 2cm clear margins and 33 radiation treatments. After having annual scans and being in the clear, it has now reappeared. The doctors seems scared about this because it is so rare to come back with clear margins and radiation. I am now facing a double masctectomy and Gleevac and I'm not even 30 years old yet! Now that I'm a mommy, I have to worry about my baby growing up watching me sick, not to mention, someone to take care of her while I recover. In 2006 my appendix was about to rupture so they removed in as an emergency surgery. From pathology, they found there was a carcinoid tumor in it. Has anyone else had DFSP with reoccurance after clear margins and radiation? Has anyone had DFSP and other unrelated cancers?

DFSP in breast area
Nov 28, 2009 I had DFSP removed by Mohs from my left breast. I had it for about 3 years before removed. It looked like brownish purple spot smaller than a dime. The surgeon said to follow up with derm every 3 months for 3 years. My question what does it look like when and if it comes back and does it come back in the same location? Did you have yours removed by Mohs? I have been reading others have had body scans....is that something I too should request? and why are some on Gleevac and others have radiation. I want to be sure I am doing all the right things.

Thanks!

Unknown

bstar said:

Followup Visits
Hi JC,

You mentioned a 3 week follow up visit. What have you been told in addition to this for future follow up? I'm comparing notes with you now because we are both fairly close in
time frame. My surgery was Sept/1/09 and first follow up Oct/8/09 (5 week later).
I was told to have my next follow up after 6 months which will be approx. April 2010

bstar

Hi bstar,
I am so sorry that
Hi bstar,

I am so sorry that I haven't been on for a while.

I had a visit a week after surgery, then another a month after surgery. I have another at the end of this month, which will 2.5 months after the surgery. Each of these were with the reconstructive surgeon. The DFSP surgeon wants to see me in a month or so, and he will follow me for 10 years.

Do you know how long you will be followed? The literature suggests that 10-15 years is not uncommon, despite the rare reoccurence after MOHS.

How are you doing?

JC

Unknown

sarahmendenhall said:

DFSP in breast area
I was diagnosed with dfsp in my upper left breast area in 2004. I had to surgeries with 2cm clear margins and 33 radiation treatments. After having annual scans and being in the clear, it has now reappeared. The doctors seems scared about this because it is so rare to come back with clear margins and radiation. I am now facing a double masctectomy and Gleevac and I'm not even 30 years old yet! Now that I'm a mommy, I have to worry about my baby growing up watching me sick, not to mention, someone to take care of her while I recover. In 2006 my appendix was about to rupture so they removed in as an emergency surgery. From pathology, they found there was a carcinoid tumor in it. Has anyone else had DFSP with reoccurance after clear margins and radiation? Has anyone had DFSP and other unrelated cancers?

Hi,
Have you had a second or
Hi,

Have you had a second or third opinion? If you are located in the northeast, I would check Dr. Victor Marks at Geisinger. If not, it would be worth having another opinion about the cancer.

I had MOHS; my cancer wasn't in my breast, but they had to move its tissue and rearrange my left breast since the cancer was in the chest near the breast, and I suppose it had spread to the upper left one.

JC

Unknown

sarahmendenhall said:

DFSP in breast area
I was diagnosed with dfsp in my upper left breast area in 2004. I had to surgeries with 2cm clear margins and 33 radiation treatments. After having annual scans and being in the clear, it has now reappeared. The doctors seems scared about this because it is so rare to come back with clear margins and radiation. I am now facing a double masctectomy and Gleevac and I'm not even 30 years old yet! Now that I'm a mommy, I have to worry about my baby growing up watching me sick, not to mention, someone to take care of her while I recover. In 2006 my appendix was about to rupture so they removed in as an emergency surgery. From pathology, they found there was a carcinoid tumor in it. Has anyone else had DFSP with reoccurance after clear margins and radiation? Has anyone had DFSP and other unrelated cancers?

Hi,
Have you had a second or
Hi,

Have you had a second or third opinion? If you are located in the northeast, I would check Dr. Victor Marks at Geisinger. If not, it would be worth having another opinion about the cancer.

I had MOHS; my cancer wasn't in my breast, but they had to move its tissue and rearrange my left breast since the cancer was in the chest near the breast, and I suppose it had spread to the upper left one.

JC

Unknown

gaetanoarg said:

DFSP in breast area
Nov 28, 2009 I had DFSP removed by Mohs from my left breast. I had it for about 3 years before removed. It looked like brownish purple spot smaller than a dime. The surgeon said to follow up with derm every 3 months for 3 years. My question what does it look like when and if it comes back and does it come back in the same location? Did you have yours removed by Mohs? I have been reading others have had body scans....is that something I too should request? and why are some on Gleevac and others have radiation. I want to be sure I am doing all the right things.

Thanks!

I am not on Gleevac or
I am not on Gleevac or radiation; nor did I have chemo. Each treatment depends on the specific extent of the cancer, where it occurs, and also, I think, the physician.

I always think it is good to get more than one opinion; that is what led me to the surgeons who were familiar with DFSP and MOHS and who had treated several cases of it before; they had also written an article about it.

My MOHS surgeon didn't use Gleevac on me prior to the surgery since he said it might cause the spindles to break off. I actually didn't realize that it was prescribed after surgery.


In any case, I appreciate the despair that each of you has; it is truly traumatic to go through this. I am glad to 'talk' and share what I 'know'.

JC