Dermatofibrosarcoma protuberans (DFSP)

bstar

unknown said:

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

Followup visits and comment
Hi JC,

Sounds like your doctors are taking care of business for you which is very good to hear.So far my reconstructive surgeon said to see him in 6 months after the first followup. Its a 1700 mile round trip each time to see him so I try to do Lab tests locally if I can and have the results Faxed to my 2 Doctors where they practice,it saves time.
There is no substitute for an office visit though and the doctors involved in my case are quite particular that I see them even though there are qualified Doctors closer. I understand it,they know exactly what has been done and can judge my case more accuratly.

I've been monitoring these posts quite regularly JC and there have been a couple of women
here with questions, they have been dealing with DFSP to the Breast area.I'm glad you came on
and posted a comment. Being a man, even though I'm a 65 year old Grandpa with a good family and seen it all I'm still being sensitive to a womens needs and feel another women would be
better to address questions of this nature. I respect people and from the old school,etiquit
and being a gentleman still means a lot in my world so I stayed silent even though I wanted so much to encourage and make comment.

Unknown

bstar said:

Followup visits and comment
Hi JC,

Sounds like your doctors are taking care of business for you which is very good to hear.So far my reconstructive surgeon said to see him in 6 months after the first followup. Its a 1700 mile round trip each time to see him so I try to do Lab tests locally if I can and have the results Faxed to my 2 Doctors where they practice,it saves time.
There is no substitute for an office visit though and the doctors involved in my case are quite particular that I see them even though there are qualified Doctors closer. I understand it,they know exactly what has been done and can judge my case more accuratly.

I've been monitoring these posts quite regularly JC and there have been a couple of women
here with questions, they have been dealing with DFSP to the Breast area.I'm glad you came on
and posted a comment. Being a man, even though I'm a 65 year old Grandpa with a good family and seen it all I'm still being sensitive to a womens needs and feel another women would be
better to address questions of this nature. I respect people and from the old school,etiquit
and being a gentleman still means a lot in my world so I stayed silent even though I wanted so much to encourage and make comment.

Hi bstar,
It is good to hear
Hi bstar,

It is good to hear from you.

You have a 1700 mile trip to the doctor? Wow. I can see why you don't want to travel for tests! You said you went to Van Couver. Do you live in Canada? (No need to answer, if you don't want to; I just wonder how the Canadian system is with this. I have spent lots of time in Canada and do lots of research there, including on health care.)

I live in a rural area, but the medical center at which I did my treatment is only about 65 miles away; but many others I considered were about 200 miles away. I see from other posts on this site that it is often the case that people have to travel a day for care. That reconfirms the rarity of finding physicians who actually treat this type of cancer. A hospital closer to me (and many others, for 20 years)misdiagnosed me and hadn't heard of Mohs, which scares me.

After reading the other recent posts, I wonder how many physicians don't do Mohs (not all are trained) and thus opt out for wide margin. Wide margin does not have the success rate Mohs does. Of course, sometimes wide margin is the best option given the particular problem. I am wondering if that was the case for some others who have the cancer in the breast area. There are a couple of other women who discussed this in another venue on this CAN site.

I have learned that we have to be our own advocates and that can be hard in the health care system. We are all so vulnerable. And you are correct that the physical scars bring forth certain emotions. I imagine that none of us is the same given the cancer and the surgeries, which makes it more difficult for people to relate to us, and vice versa. Perhaps it can make us strong, though. It is 'funny', but I have always been rather feisty, and I think people thought the cancer would make me less so; but it has made me more so!

Take care, Bstar. I will be in touch.

JC

bstar

unknown said:

Hi bstar,
It is good to hear
Hi bstar,

It is good to hear from you.

You have a 1700 mile trip to the doctor? Wow. I can see why you don't want to travel for tests! You said you went to Van Couver. Do you live in Canada? (No need to answer, if you don't want to; I just wonder how the Canadian system is with this. I have spent lots of time in Canada and do lots of research there, including on health care.)

I live in a rural area, but the medical center at which I did my treatment is only about 65 miles away; but many others I considered were about 200 miles away. I see from other posts on this site that it is often the case that people have to travel a day for care. That reconfirms the rarity of finding physicians who actually treat this type of cancer. A hospital closer to me (and many others, for 20 years)misdiagnosed me and hadn't heard of Mohs, which scares me.

After reading the other recent posts, I wonder how many physicians don't do Mohs (not all are trained) and thus opt out for wide margin. Wide margin does not have the success rate Mohs does. Of course, sometimes wide margin is the best option given the particular problem. I am wondering if that was the case for some others who have the cancer in the breast area. There are a couple of other women who discussed this in another venue on this CAN site.

I have learned that we have to be our own advocates and that can be hard in the health care system. We are all so vulnerable. And you are correct that the physical scars bring forth certain emotions. I imagine that none of us is the same given the cancer and the surgeries, which makes it more difficult for people to relate to us, and vice versa. Perhaps it can make us strong, though. It is 'funny', but I have always been rather feisty, and I think people thought the cancer would make me less so; but it has made me more so!

Take care, Bstar. I will be in touch.

JC

Medical Care
Canada has a fairly good Medical system.The magnitude of the surgerys and care I received would have cost a fortune I'm sure.It cost me virtually nothing,I pay a premium of $160 a year and the BC Carecard picks up the tab.My employer who I'm now retired from pays the balance of the yearly premiums.I live in Northern British Columbia.In our City we have a good medical center,Cat scan equipment,ultra sound, a good Medical lab and many family physicians and several surgeons. With something like DFSP though we have to travel to where the specialists are which is Vancouver. I have flown a few times but that gets quite expensive, fairs are based on numbers of passengers and that is reflected in the cost per ticket.There is a bus once a week for medical purposes which travels from this northwest BC
area to Vancouver and back, I may consider this as an option in April.I've been seeing news
feeds on TV about President Obama's efforts to impove the medical care in the US and We feel fortunate here in Canada to receive the health care we do,its still not perfect
but at lease "ALL" people receive good health care rich or poor,young or old because medical problems like Cancer etc.make no distinction who it hits,thats a given.

Take care,thanks for the quick reply
bstar

Unknown

bstar said:

Medical Care
Canada has a fairly good Medical system.The magnitude of the surgerys and care I received would have cost a fortune I'm sure.It cost me virtually nothing,I pay a premium of $160 a year and the BC Carecard picks up the tab.My employer who I'm now retired from pays the balance of the yearly premiums.I live in Northern British Columbia.In our City we have a good medical center,Cat scan equipment,ultra sound, a good Medical lab and many family physicians and several surgeons. With something like DFSP though we have to travel to where the specialists are which is Vancouver. I have flown a few times but that gets quite expensive, fairs are based on numbers of passengers and that is reflected in the cost per ticket.There is a bus once a week for medical purposes which travels from this northwest BC
area to Vancouver and back, I may consider this as an option in April.I've been seeing news
feeds on TV about President Obama's efforts to impove the medical care in the US and We feel fortunate here in Canada to receive the health care we do,its still not perfect
but at lease "ALL" people receive good health care rich or poor,young or old because medical problems like Cancer etc.make no distinction who it hits,thats a given.

Take care,thanks for the quick reply
bstar

Hi bstar,
Thanks. Yes, I
Hi bstar,

Thanks. Yes, I knew that the system covered 'all', unlike ours, but I wasn't sure about payment. My personal insurance premium is over $100 per month for a family plan and my employer, at present, pays the rest; but we have to do certain things to get them to make the insurance co-pay. I have to pay for a deductible each visit. My bill for the day in the hospital was over $38,000, although more than half was covered by my insurance; I hope the hospital will accept what has been paid since I have met my deductible this year; however, I have over $1000 in bills from the preliminary physicians and labs and there is no 'grace' for that if one is employed, which I am. I have 4 dependents in addition to myself, however, and not even the ACS will count all of them when considering coverage or financial support. Let's just say it has been a rough year in every way! My husband works seasonally for a company as a portrait photographer and also is trying to get his own business off the ground, so it isn't easy. (He has some great photos from a trip to BC, by the way! You must also have some good ones given your interest in fishing and your location! BC is beautiful!)

My husband and one of my daughters are in Canada now for a short trip. We love it there. Had it not been for my recuperation, I would have gone myself!

Take care. Thanks for the info! I will continue to spread the word about Candian health care!

JC

anna_maria

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.

Just got diagnosed today
I'm not sure how to post on this site so I'm making this a reply to Keri. Hope nobody minds.

My head is still spinning since I came home from the doctor today. I didn't even realize that this was a form of cancer until I started doing some web research. Guess it was the word "sarcoma" that tipped me off.

So I've had this "thing" on my stomach for more than 20 years. It kept growing slowly, but didn't really bother me (except cosmetically). While I was pregnant it would sometimes sting and itch. I tried to have it removed once, in my early twenties, when it was still only about an inch across. The doctor said it was harmless, a fibroma with some discoloration. But it immediately grew back again (this was explained as "overactive healing", leading to keloid scar tissue). So I decided not to touch it again. The last summer I went to a dermatologist to have a weird-looking birthmark checked out. She spotted this lumpy, discolored patch (11 x 7 cm) and took a biopsy. Then she sent me to a larger hospital, where they made a larger biopsy. Then the results were sent as far as the UK to figure out what this was. (I live in Sweden.)

Now my surgery is scheduled for Feb. 15. I'm a bit freaked out about it. They're going to cut all the way across from hipbone to hipbone, and hopefully there will be enough loose skin that a skin graft won't be necessary. (Hey, a free tummy tuck!) They'll throw in a new navel too, and I'll only have to stay one night in the hospital. Shouldn' be too bad should it?!

I just needed to get this off my chest. Just reading all the stories posted here has been incredibly helpful. Thanks to all of you for listening and for sharing.

bstar

unknown said:

Hi bstar,
Thanks. Yes, I
Hi bstar,

Thanks. Yes, I knew that the system covered 'all', unlike ours, but I wasn't sure about payment. My personal insurance premium is over $100 per month for a family plan and my employer, at present, pays the rest; but we have to do certain things to get them to make the insurance co-pay. I have to pay for a deductible each visit. My bill for the day in the hospital was over $38,000, although more than half was covered by my insurance; I hope the hospital will accept what has been paid since I have met my deductible this year; however, I have over $1000 in bills from the preliminary physicians and labs and there is no 'grace' for that if one is employed, which I am. I have 4 dependents in addition to myself, however, and not even the ACS will count all of them when considering coverage or financial support. Let's just say it has been a rough year in every way! My husband works seasonally for a company as a portrait photographer and also is trying to get his own business off the ground, so it isn't easy. (He has some great photos from a trip to BC, by the way! You must also have some good ones given your interest in fishing and your location! BC is beautiful!)

My husband and one of my daughters are in Canada now for a short trip. We love it there. Had it not been for my recuperation, I would have gone myself!

Take care. Thanks for the info! I will continue to spread the word about Candian health care!

JC

How are you
Hope all is well JC and your life is back on track. I say that knowing full well that during those hard days we went through itslike we've been derailed for a time until our
life is back on the track we were on. Mothers/wives are very busy people and I'm sure there were days you just had a good cry trying to juggle work,family,children,home,appointments,doctors and so forth,the pressures can be overwhelming.I salute all the Moms/wives out there who have dealt with or are dealing with
any kind of Cancer and still keep on keeping on in the midst of it all for their families.
Maybe someone out there will read this and take heart that we don't have to suffer alone,
there are people that care because they know what it feels like,we've been through the storms of life. I've been through many storms in my 65 years,but I'm still here,still loving life.still thankful to God to wake up every morning and try to bless at least one person each day.

bstar

Jan10

Just Diagnozed, anyone knows a good doctor in UK?
Hi

I just have been diagnosed, living in the UK, does anyone know a good specialist here in UK ?

THX

Unknown

bstar said:

How are you
Hope all is well JC and your life is back on track. I say that knowing full well that during those hard days we went through itslike we've been derailed for a time until our
life is back on the track we were on. Mothers/wives are very busy people and I'm sure there were days you just had a good cry trying to juggle work,family,children,home,appointments,doctors and so forth,the pressures can be overwhelming.I salute all the Moms/wives out there who have dealt with or are dealing with
any kind of Cancer and still keep on keeping on in the midst of it all for their families.
Maybe someone out there will read this and take heart that we don't have to suffer alone,
there are people that care because they know what it feels like,we've been through the storms of life. I've been through many storms in my 65 years,but I'm still here,still loving life.still thankful to God to wake up every morning and try to bless at least one person each day.

bstar

Hi bstar,
Anyone who has
Hi bstar,

Anyone who has cancer knows what is it like to have to juggle all that they do along with appointments, etc., and families must also make adjustments as they, too, change. Like you, I am thankful that I am alive and loving life!

I had my two and a half month check up yesterday, and other than a small hole that is still healing, things look pretty good. I see the reconstructive surgeon again in three months and the MOHS surgeon around then, too.

Community support is very important and I have found these discussions to be valuable, and hope others will too!

It must be rather cold where you are, now. It is in the 20s (F) here and it was in the single digits a couple of weeks ago. It even snowed today, decorating the landscape with dots of white as the mountains faintly emerge in the distance.

Take care.
JC

Unknown

Jan10 said:

Just Diagnozed, anyone knows a good doctor in UK?
Hi

I just have been diagnosed, living in the UK, does anyone know a good specialist here in UK ?

THX

the rarer cancers forum
Hi,

I do not know of any, but perhaps you are aware of The Rarer Cancers Forum, which originates in the UK. Here is their link.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291&scode=0#add_comment

Take care.
JC

davidW

unknown said:

the rarer cancers forum
Hi,

I do not know of any, but perhaps you are aware of The Rarer Cancers Forum, which originates in the UK. Here is their link.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291&scode=0#add_comment

Take care.
JC

Dermatofibrosarcoma Protuberans (DFSP)
Hello, everyone. I am new on this board and hope someone can help with suggestions for doctors (dermatologist, oncologist, etc) in the Denver area. My eleven-year old granddaughter in Colorado Springs had a lump removed from her shoulder recently with no prior biopsy. It turned out to be DFSP.

I am in New Mexico, but our family is mobilizing to get all the information and suggestions together possible so that further treatment is done properly. We know from our research on the Web that she needs MOHS surgery but since the tumor has already been removed also realize it may be more difficult locating the margins. Is there anyone on the board in Colorado who has had a good experience with a doctor or hospital treating DFSP? If not DFSP a good experience treating some other Sarcoma? If so I would very much appreciate your recommendations.

Thanks so much.

David

teef

anna_maria said:

Just got diagnosed today
I'm not sure how to post on this site so I'm making this a reply to Keri. Hope nobody minds.

My head is still spinning since I came home from the doctor today. I didn't even realize that this was a form of cancer until I started doing some web research. Guess it was the word "sarcoma" that tipped me off.

So I've had this "thing" on my stomach for more than 20 years. It kept growing slowly, but didn't really bother me (except cosmetically). While I was pregnant it would sometimes sting and itch. I tried to have it removed once, in my early twenties, when it was still only about an inch across. The doctor said it was harmless, a fibroma with some discoloration. But it immediately grew back again (this was explained as "overactive healing", leading to keloid scar tissue). So I decided not to touch it again. The last summer I went to a dermatologist to have a weird-looking birthmark checked out. She spotted this lumpy, discolored patch (11 x 7 cm) and took a biopsy. Then she sent me to a larger hospital, where they made a larger biopsy. Then the results were sent as far as the UK to figure out what this was. (I live in Sweden.)

Now my surgery is scheduled for Feb. 15. I'm a bit freaked out about it. They're going to cut all the way across from hipbone to hipbone, and hopefully there will be enough loose skin that a skin graft won't be necessary. (Hey, a free tummy tuck!) They'll throw in a new navel too, and I'll only have to stay one night in the hospital. Shouldn' be too bad should it?!

I just needed to get this off my chest. Just reading all the stories posted here has been incredibly helpful. Thanks to all of you for listening and for sharing.

Don't freak out.
It seems scary but there are lots of good outcomes. I had this 6 years ago. Like lots of other people, I was told by my family doctor that the little lump on my upper leg was nothing to worry about. After 7 years it grew to about 1.5 cm slightly raised reddish bump. I thought it was kind of unsightly so went to a dermatologist to have it removed. When the lab results came back they found it was dfsp. I read about Moh's but my plastic surgeon said that was only worth having if the lump was on your face or hand where you wouldn't want a lot cut out. He said it was safer to excise with wide 3cm margins. He closed it with two flaps which he said makes a neater job than a skin graft. It was day surgery.

To be honest, it didn't look like a neat job right after it was done but it all healed up and flattened out. I now have a giant s-shaped scar that goes all the way from my knee to the top of my leg. After a year it was whitish and flat and not that bad looking, and there has never been a regrowth of the cancer. Most of the time I pretty much forget I ever had it. I keep an eye on the general area, but really the chances of regrowth and metastasis are tiny.

I live in Halifax (Canada) which is a small city, but everything was dealt with professionally and promptly. I wondered about flying somewhere bigger to have specialists, but I think that those thoughts were fueled by the big panic I felt when first diagnosed.

Your chances are good of making a straightforward recovery and just putting it behind you.

Jared61

DFSP in left arm
I had this same tumor removed from my arm ago. I had a similar situation but a dermatologist removed it from my arm without any markers not thinking it was anything but scar tissue from years of allergy shots. I found out 3 weeks later after the biopsy came back it was cancer. I had the surgery in NYC by a cancer surgeon and had most of the soft tissue from my shoulder to my elbow removed. My arm doesn't look pretty, but other than soreness from time to time, no return of the cancer. If you have any questions, don't hesitate to contact me.

HS

Jared61 said:

DFSP in left arm
I had this same tumor removed from my arm ago. I had a similar situation but a dermatologist removed it from my arm without any markers not thinking it was anything but scar tissue from years of allergy shots. I found out 3 weeks later after the biopsy came back it was cancer. I had the surgery in NYC by a cancer surgeon and had most of the soft tissue from my shoulder to my elbow removed. My arm doesn't look pretty, but other than soreness from time to time, no return of the cancer. If you have any questions, don't hesitate to contact me.

DFSP
Hello,

I read your entry and appreciate the information you shared with those on the network about your experience with DFSP. It sounds like from your experience you had testing done before your surgery and the surgeon was prepared for removing the involved areas. Would you mind helping me by reading my situation and answering a few questions?

I am new to this network as a very concerned mom of a 12 year old son with an unknown mass in his back. We have had multiple imaging tests over the past months and the doctors don't know what it is, but are saying it is probably nothing. There is an MRI report says there is a contrast indicated "focal thickening of skin" that is about 3 cm in size. The lumpy area feels hard and wasn't there 1 year ago. The skin over the lump doesn't have any observable difference in color from normal.

Did your DFSP occur with changes on top the skin? You said you thought yours was scar tissue so that is what triggered my question. Thank you so much for considering my question.

HS

anna_maria

teef said:

Don't freak out.
It seems scary but there are lots of good outcomes. I had this 6 years ago. Like lots of other people, I was told by my family doctor that the little lump on my upper leg was nothing to worry about. After 7 years it grew to about 1.5 cm slightly raised reddish bump. I thought it was kind of unsightly so went to a dermatologist to have it removed. When the lab results came back they found it was dfsp. I read about Moh's but my plastic surgeon said that was only worth having if the lump was on your face or hand where you wouldn't want a lot cut out. He said it was safer to excise with wide 3cm margins. He closed it with two flaps which he said makes a neater job than a skin graft. It was day surgery.

To be honest, it didn't look like a neat job right after it was done but it all healed up and flattened out. I now have a giant s-shaped scar that goes all the way from my knee to the top of my leg. After a year it was whitish and flat and not that bad looking, and there has never been a regrowth of the cancer. Most of the time I pretty much forget I ever had it. I keep an eye on the general area, but really the chances of regrowth and metastasis are tiny.

I live in Halifax (Canada) which is a small city, but everything was dealt with professionally and promptly. I wondered about flying somewhere bigger to have specialists, but I think that those thoughts were fueled by the big panic I felt when first diagnosed.

Your chances are good of making a straightforward recovery and just putting it behind you.

I feel better now
Thanks for posting! It was very reassuring to read about your experience. It is one thing to read the statistics, which all indicate I shouldn't be worried, but it makes a world of difference to hear from a real person who has been through this and come out on the other side.
Right now I'm just waiting to get my surgery done, the surgeon had to postpone it for a week. Guess I'd better try to keep busy and not think too much about it.
Again, my heartfelt thanks to you for sharing your story!

Unknown

HS said:

DFSP
Hello,

I read your entry and appreciate the information you shared with those on the network about your experience with DFSP. It sounds like from your experience you had testing done before your surgery and the surgeon was prepared for removing the involved areas. Would you mind helping me by reading my situation and answering a few questions?

I am new to this network as a very concerned mom of a 12 year old son with an unknown mass in his back. We have had multiple imaging tests over the past months and the doctors don't know what it is, but are saying it is probably nothing. There is an MRI report says there is a contrast indicated "focal thickening of skin" that is about 3 cm in size. The lumpy area feels hard and wasn't there 1 year ago. The skin over the lump doesn't have any observable difference in color from normal.

Did your DFSP occur with changes on top the skin? You said you thought yours was scar tissue so that is what triggered my question. Thank you so much for considering my question.

HS

Hi HS,
I was told many, many
Hi HS,

I was told many, many times that it was scar tissue. The lump started out small over 20 years ago and it was only a small, tiny ball under the skin. Then it grew bigger, popping out from the skin, strethcing it, and then stretching out into many small spindles. My skin color didn't change until a few years ago, however; that is when I also noticed the spindles growing in number and my skin changing color. As I understand it, the skin changes color, in part, due to its being stretched by the tumor. DFSP starts in the tissue but grows into the second layer of the skin, so I guess that when it gets to that level, and increases in size, it creates problems with blood flow, etc., and discolors the skin, along with the stretching of it.

The best advice I can give is to have any lump anyone has biopsied. No one would do that for me until this past year. The biopy, finally, was sent for three opinions, which I found to be helpful and the physicians also found to be helpful.

One thing I have learned from my experience is that any lump in the body indicates an abnormality. That abnormality can likely be cancerous, or can become so. If someone is unfamiliar with DFSP, they tend to dismiss it as 'scar tissue' or as 'nothing'.

I wish I had been referred to a dermatologist years ago. While it is not a skin cancer, DFSP has been identified mostly by dermatologists, so that is what I would recommend to anyone who is told a lump on the skin is nothing. Also, I would go for as many opinions as I could as it seems clear to me, based on the experiences described by the members of this discussion board,that it can take a while to find a physician who recognizes, and can describe/diagnose accurately, DFSP.

I hope this helps.

JC

Keri Roo

unknown said:

Hi HS,
I was told many, many
Hi HS,

I was told many, many times that it was scar tissue. The lump started out small over 20 years ago and it was only a small, tiny ball under the skin. Then it grew bigger, popping out from the skin, strethcing it, and then stretching out into many small spindles. My skin color didn't change until a few years ago, however; that is when I also noticed the spindles growing in number and my skin changing color. As I understand it, the skin changes color, in part, due to its being stretched by the tumor. DFSP starts in the tissue but grows into the second layer of the skin, so I guess that when it gets to that level, and increases in size, it creates problems with blood flow, etc., and discolors the skin, along with the stretching of it.

The best advice I can give is to have any lump anyone has biopsied. No one would do that for me until this past year. The biopy, finally, was sent for three opinions, which I found to be helpful and the physicians also found to be helpful.

One thing I have learned from my experience is that any lump in the body indicates an abnormality. That abnormality can likely be cancerous, or can become so. If someone is unfamiliar with DFSP, they tend to dismiss it as 'scar tissue' or as 'nothing'.

I wish I had been referred to a dermatologist years ago. While it is not a skin cancer, DFSP has been identified mostly by dermatologists, so that is what I would recommend to anyone who is told a lump on the skin is nothing. Also, I would go for as many opinions as I could as it seems clear to me, based on the experiences described by the members of this discussion board,that it can take a while to find a physician who recognizes, and can describe/diagnose accurately, DFSP.

I hope this helps.

JC

Bstar and JC:
Hello again. First I want to appologize for not replying right away. I do appreciate the reply BStar and all the info you share, along with JC. I think I needed my mind to "settle" as much as it can and not think too much about DFSP.

Since Dec, I have seen an Oncologist in Halifax, NS. I was not impressed at all. He and the nurse basically called DFSP "cancer-light" and that I really had nothing to worry about. I realize that the chance of reoccurance and death is low but it is still a lot to deal with - physically, mentally and emotionally. He said that a CT scan was not necessary, also that it didn't matter how it was removed (MOHS or wide excision) as long as it gets removed. He said that you I shouldn't think of DFSP as a 'Sarcoma'. He said that there would be no need to see him again. I asked if he knew of anyone in the area that has DFSP who I could talk with and he said that he has seen other patients that have DFSP in NS but none that would want to talk to me. I left feeling defeated and not trusting a word he said.

I'm scheduled for my MOHS procedure on Feb. 24th in NB. I am starting to get nervous about the surgery. I also have a CT scan booked for March 1st. I thought it would be a good idea to still go ahead with the CT scan just to be safe.


I also found a lump in my breast and just had an ultrasound done two days ago. My family dr. says its probably benign but thinks that my general surgon will want to remove it to be safe. I find out the results on Feb. 23 - the day I leave for my MOHS procedure.

I do have a question: I also have a small spot on my belly. It seems similar to the DFSP spot on my back, just smaller. It is slightly raised and colored. (The Oncologist didn't believe me when I said I thought that they were similar in appearance!) What are the odds of having DFSP in two locations? I think the MOHS surgeon will be removing it as well.

JC: I too am a mom. I have two beautiful baby girls and have to be a mom everyday. I feel like sometimes I wish time would stop so I could breath and deal with this, and at the same time, I'm glad it doesn't since it keeps my mind focused on them. I am still nursing and co-sleeping. Its funny, as a mom what you worry about. I worry about not being able to nurse and sleep with my baby after my procedure. How was the recovery time for you? Were you out of commission for a while, so to speak? My mother is coming to stay with us for a week to help us out.

I find this whole experience very hard mentally. I don't feel sick, yet I have cancer on my back. Its hard to wrap my head around this.

Hope to speak to you both again soon. I will keep you updated.

bstar

Keri Roo said:

Bstar and JC:
Hello again. First I want to appologize for not replying right away. I do appreciate the reply BStar and all the info you share, along with JC. I think I needed my mind to "settle" as much as it can and not think too much about DFSP.

Since Dec, I have seen an Oncologist in Halifax, NS. I was not impressed at all. He and the nurse basically called DFSP "cancer-light" and that I really had nothing to worry about. I realize that the chance of reoccurance and death is low but it is still a lot to deal with - physically, mentally and emotionally. He said that a CT scan was not necessary, also that it didn't matter how it was removed (MOHS or wide excision) as long as it gets removed. He said that you I shouldn't think of DFSP as a 'Sarcoma'. He said that there would be no need to see him again. I asked if he knew of anyone in the area that has DFSP who I could talk with and he said that he has seen other patients that have DFSP in NS but none that would want to talk to me. I left feeling defeated and not trusting a word he said.

I'm scheduled for my MOHS procedure on Feb. 24th in NB. I am starting to get nervous about the surgery. I also have a CT scan booked for March 1st. I thought it would be a good idea to still go ahead with the CT scan just to be safe.


I also found a lump in my breast and just had an ultrasound done two days ago. My family dr. says its probably benign but thinks that my general surgon will want to remove it to be safe. I find out the results on Feb. 23 - the day I leave for my MOHS procedure.

I do have a question: I also have a small spot on my belly. It seems similar to the DFSP spot on my back, just smaller. It is slightly raised and colored. (The Oncologist didn't believe me when I said I thought that they were similar in appearance!) What are the odds of having DFSP in two locations? I think the MOHS surgeon will be removing it as well.

JC: I too am a mom. I have two beautiful baby girls and have to be a mom everyday. I feel like sometimes I wish time would stop so I could breath and deal with this, and at the same time, I'm glad it doesn't since it keeps my mind focused on them. I am still nursing and co-sleeping. Its funny, as a mom what you worry about. I worry about not being able to nurse and sleep with my baby after my procedure. How was the recovery time for you? Were you out of commission for a while, so to speak? My mother is coming to stay with us for a week to help us out.

I find this whole experience very hard mentally. I don't feel sick, yet I have cancer on my back. Its hard to wrap my head around this.

Hope to speak to you both again soon. I will keep you updated.

You are on track Keri
Keri I was shocked when I read your latest post this evening.The Dr. had no right to basiclly dismiss DFSP like he did, was he trying to mislead you and soften his diagnosis,my
goodness,and to say a CT Scan was'nt necessary was utterly foolish,that is so necessary to allow the doctors to acually see the size and depth they are dealing with before performing Mohs Micrographic Surgery. I first had an ultra sound then a C T Scan.

Let me encourage you Keri, you are on track getting a CT Scan and Mohs. The Dr. doing
the Mohs will know exactly what to look for and examine you as well,speak to him of your other concerns too, he'll be a better judge of what is needed.

Today I had a long phone conversation with a representitive of the Canadian Cancer Society,they would like me to be a contact person in Canada for DFSP because it is rare
and to have someone who has first hand knowledge of DFSP is very benificial to them.
I mentioned I was helping in whatever way I can already on this website and I stressed
how I've seen so many doctors misdiagnosing DFSP time and time again,its actually scary
to see this happening.
I am well,strong,active,walk 40 mins. a day every day,only missed 3 days walking since October because of bad winter weather. Just booked my 6 month followup appointment in Vancouver for April 13 with my reconstructive surgeon.

Yes I hear you that it takes its toll on you mentally, like I said to JC after it was all
over and I healed,it was like I took my life back again and in that time I was going through it were some dark clouds of anguish,anger,frustration and the doctors can't
help us with the emotions and the scars it can cause.We need others for encouragement,
to listen to our story, to give us direction,to go through some of these things with us,
ones like myself,JC and others would have walked that road already and have a heart to
listen. God bless you Keri, you'll be okay,you're walking the right direction with this.
Tell your children Mommy will be ok that you might have to go through a few things but you will be okay,kids need to hear that from us,they don't understand why but they worry too.
I'm a Grandpa many times over, I know kids,there liitle lives are fragile,they need reassuring.

bstar

Unknown

bstar said:

You are on track Keri
Keri I was shocked when I read your latest post this evening.The Dr. had no right to basiclly dismiss DFSP like he did, was he trying to mislead you and soften his diagnosis,my
goodness,and to say a CT Scan was'nt necessary was utterly foolish,that is so necessary to allow the doctors to acually see the size and depth they are dealing with before performing Mohs Micrographic Surgery. I first had an ultra sound then a C T Scan.

Let me encourage you Keri, you are on track getting a CT Scan and Mohs. The Dr. doing
the Mohs will know exactly what to look for and examine you as well,speak to him of your other concerns too, he'll be a better judge of what is needed.

Today I had a long phone conversation with a representitive of the Canadian Cancer Society,they would like me to be a contact person in Canada for DFSP because it is rare
and to have someone who has first hand knowledge of DFSP is very benificial to them.
I mentioned I was helping in whatever way I can already on this website and I stressed
how I've seen so many doctors misdiagnosing DFSP time and time again,its actually scary
to see this happening.
I am well,strong,active,walk 40 mins. a day every day,only missed 3 days walking since October because of bad winter weather. Just booked my 6 month followup appointment in Vancouver for April 13 with my reconstructive surgeon.

Yes I hear you that it takes its toll on you mentally, like I said to JC after it was all
over and I healed,it was like I took my life back again and in that time I was going through it were some dark clouds of anguish,anger,frustration and the doctors can't
help us with the emotions and the scars it can cause.We need others for encouragement,
to listen to our story, to give us direction,to go through some of these things with us,
ones like myself,JC and others would have walked that road already and have a heart to
listen. God bless you Keri, you'll be okay,you're walking the right direction with this.
Tell your children Mommy will be ok that you might have to go through a few things but you will be okay,kids need to hear that from us,they don't understand why but they worry too.
I'm a Grandpa many times over, I know kids,there liitle lives are fragile,they need reassuring.

bstar

Hi bstar!
I am so glad you
Hi bstar!

I am so glad you will represent the CCS! I am going to contact the ACS to see what role I might play; I am thinking of trying to do a conference so all of us who have had this and get together and talk about it. Maybe we can do something......so much needs to be done!

I agree with your comments to Keri and I think you are doing a wonderful service to all of us who have DFSP.

If anyone would like to talk at any time, I also have an email: theessenceofpuregoodness@gmail.com

In addition, to assure you I am not a nut, if you email me I can provide my full name, and a link to my professional website. Then, if you googled me, you would find out more about my professional and personal work and get a better sense of who I am.

Take care! I will check in again soon!

JC

P.S. bstar, did you get to the Olympics?

Unknown

Keri Roo said:

Bstar and JC:
Hello again. First I want to appologize for not replying right away. I do appreciate the reply BStar and all the info you share, along with JC. I think I needed my mind to "settle" as much as it can and not think too much about DFSP.

Since Dec, I have seen an Oncologist in Halifax, NS. I was not impressed at all. He and the nurse basically called DFSP "cancer-light" and that I really had nothing to worry about. I realize that the chance of reoccurance and death is low but it is still a lot to deal with - physically, mentally and emotionally. He said that a CT scan was not necessary, also that it didn't matter how it was removed (MOHS or wide excision) as long as it gets removed. He said that you I shouldn't think of DFSP as a 'Sarcoma'. He said that there would be no need to see him again. I asked if he knew of anyone in the area that has DFSP who I could talk with and he said that he has seen other patients that have DFSP in NS but none that would want to talk to me. I left feeling defeated and not trusting a word he said.

I'm scheduled for my MOHS procedure on Feb. 24th in NB. I am starting to get nervous about the surgery. I also have a CT scan booked for March 1st. I thought it would be a good idea to still go ahead with the CT scan just to be safe.


I also found a lump in my breast and just had an ultrasound done two days ago. My family dr. says its probably benign but thinks that my general surgon will want to remove it to be safe. I find out the results on Feb. 23 - the day I leave for my MOHS procedure.

I do have a question: I also have a small spot on my belly. It seems similar to the DFSP spot on my back, just smaller. It is slightly raised and colored. (The Oncologist didn't believe me when I said I thought that they were similar in appearance!) What are the odds of having DFSP in two locations? I think the MOHS surgeon will be removing it as well.

JC: I too am a mom. I have two beautiful baby girls and have to be a mom everyday. I feel like sometimes I wish time would stop so I could breath and deal with this, and at the same time, I'm glad it doesn't since it keeps my mind focused on them. I am still nursing and co-sleeping. Its funny, as a mom what you worry about. I worry about not being able to nurse and sleep with my baby after my procedure. How was the recovery time for you? Were you out of commission for a while, so to speak? My mother is coming to stay with us for a week to help us out.

I find this whole experience very hard mentally. I don't feel sick, yet I have cancer on my back. Its hard to wrap my head around this.

Hope to speak to you both again soon. I will keep you updated.

Hi,I am sorry it has been a
Hi,

I am sorry it has been a week since I have been on.

First of all, I am glad you will have surgery on the 24th. I actually had a CT scan and an MRI before my surgery as they wanted to see if it had spread; it is possible for it to be in more than one place. I would recommend that you 'go with you gut'; if you don't trust the physician, then find one you do. I know that sounds easy, but that is what got me to my physicians and I feel so good about them, I am convinced that we know our bodies more than anyone else and that many physicians would rather say something isn't a problem if they aren't familiar with the problem (cancer). I think that doctors who really don't understand DFSP are the ones who say 'don't worry'; if I had a dollar for every physician who told me that .....

My physician had to move a 7x12 mass of nerves and tissue. Luckily, there was enough breast tissue to take and do that. They stiched two layers below the surface but they used permabond, a glue, on the surface, which was great since I didn't have to have stitches removed. I could not lift anything for 4 weeks. I rested a good deal for another month. I still find it hard to lift things sometimes, feeling a strain underneath; and I was exhausted for the first three weeks I went back to work; but this week was a good one.

When they did the Mohs, they tested during the procedure; so they knew they got all of the cancer before I left the room. Of course, I will have follow up, before they reconstructed me, the Mohs physician called my husband and told me 'they got it all'.

Overall, I, too, was afraid; but I had to surrender to the process since I knew that I couldn't live with the cancer any longer.

It is good you have family to help. We have no family here, although one of my daughters, who graduated from college last May, stayed here to go to grad school in case she had to help. They didn't know if they would have to take muscle (which they only had to shave) and so it could have been a longer recovery. My son came home from university for a week during his break; and my high schooler was here in case there was a problem. Of course, my husband was invaluable!

I will keep you in my prayers and will be happy to talk with you via this site or even call you if that would help. Let me know.

All the best to you,
JC

bstar

unknown said:

Hi,I am sorry it has been a
Hi,

I am sorry it has been a week since I have been on.

First of all, I am glad you will have surgery on the 24th. I actually had a CT scan and an MRI before my surgery as they wanted to see if it had spread; it is possible for it to be in more than one place. I would recommend that you 'go with you gut'; if you don't trust the physician, then find one you do. I know that sounds easy, but that is what got me to my physicians and I feel so good about them, I am convinced that we know our bodies more than anyone else and that many physicians would rather say something isn't a problem if they aren't familiar with the problem (cancer). I think that doctors who really don't understand DFSP are the ones who say 'don't worry'; if I had a dollar for every physician who told me that .....

My physician had to move a 7x12 mass of nerves and tissue. Luckily, there was enough breast tissue to take and do that. They stiched two layers below the surface but they used permabond, a glue, on the surface, which was great since I didn't have to have stitches removed. I could not lift anything for 4 weeks. I rested a good deal for another month. I still find it hard to lift things sometimes, feeling a strain underneath; and I was exhausted for the first three weeks I went back to work; but this week was a good one.

When they did the Mohs, they tested during the procedure; so they knew they got all of the cancer before I left the room. Of course, I will have follow up, before they reconstructed me, the Mohs physician called my husband and told me 'they got it all'.

Overall, I, too, was afraid; but I had to surrender to the process since I knew that I couldn't live with the cancer any longer.

It is good you have family to help. We have no family here, although one of my daughters, who graduated from college last May, stayed here to go to grad school in case she had to help. They didn't know if they would have to take muscle (which they only had to shave) and so it could have been a longer recovery. My son came home from university for a week during his break; and my high schooler was here in case there was a problem. Of course, my husband was invaluable!

I will keep you in my prayers and will be happy to talk with you via this site or even call you if that would help. Let me know.

All the best to you,
JC

Keri's Mohs
Its good you responded just now JC before Keri goes for her Mohs and receives her result the day before on the 23rd. You said some things that were benefitial,I learned something too, I did'nt know what the super glue (ha ha) was called until you gave
it a name Permabond. I did'nt have stitches either, that would have left more marks on my face and I already have enough going on there without stitch marks.

Keri,we will be thinking of you tomorrow and the next day while you hear your results and
also go for your Mohs,this too shall pass. One of my daughters said something so simple to
me while I was going through the procedures and feeling kinda low,"Dad", she said "take it a day at a time, and sometimes take it just an hour at a time" in other words don't worry about tomorrow for tomorrow will worry about itself,each day has enough trouble of its own.What you are doing Keri is so important so just relax a bit,take a deep breath and walk on,these trials in life are hard and we ask ourselves "Why Me" but through these trials we become a stronger person in many ways when we rise to the challenge and keep going. Please let us know how you're doing when you're ready okay.

bstar