Dermatofibrosarcoma protuberans (DFSP)

steenie

unknown said:

Diagnosis
Hi, This is my first post to this board. I have had a lump on my upper center chest for about 20 years. I went to various doctors, none of whom wanted to do anything since they thought a biopsy could disrupt the tumor. Well, the tumor got bigger and developed into a mass that I guess I always thought was manageable, until my diagnosis with dfsp a few weeks ago. The physician did three biopsies and it seems I have a few new lumps now, which I had feared. Surgery (wide excision) is scheduled for July along with reconstruction of the area immediately following. They did a CT scan and PET scan and it showed my body to be free from dfsp elsewhere; but I am now afraid it will spread elsewhere, especially lower in my breast, given my new lumps.

The surgeon had not heard of this disease; but the reconstructive surgeon had and he said he had a patient several years ago who had it. I have considered going to Hershey, where some dermatologists have done the Mohs surgery technique; but how they will reconstruct is unknown until they are doing the surgery, and I would like to have more control and say in what occurs upfront.

By the way, my mass, including the lump that cannot be seen, is 7cm large; huge.....

I am soon to be 56 and have three biological children. I am a full-time professional who is very active; and while I might be a little overweight, I am in relatively good shape and eat well--I have been a lacto-ovo vegetarian for about 30 years.


I wish all of you well; it is hard to think that this could spread for any of us and not be treated. I have read that hypertherapy, the use of high temperatures, can increase cellular health; so I have been going to a sauna for thirty minutes a couple of times a week and am planning on buying my own to assure I can detox.

I will keep you all in my thoughts and prayers.

JC

Hi JC
I too had a tumor (on
Hi JC

I too had a tumor (on my left shoulder). It was removed last summer with Mohs procedure by a doctor who was familiar with the tumor and the procedure. I urge you to find a surgeon who is familiar and has performed this surgery before. I feel confident that my Dr. not only knew what he was doing/dealing with, but also that he removed all of it. As low grade as this cancer is, we are fortunate that this is the "cancer" we have - if we must have cancer. But why not have the best take care of it from the beginning? YOU are worth it. Travel far if need be and have it done with the utmost confidence that you can live life with no worries. But do make your follow-up appointments for the next 3-5 years. I wish you the best.

Sincerely.

Unknown

Digger33 said:

JC,
I hope everything goes
JC,
I hope everything goes well for you. The good news is that DFSP rarely spreads and hopefully that will be the case for you. I check in once in a while on a few sites and facebook to see how folks are doing. The site below has some recent folks with similiar experiences. In addition, if you are on facebook, there are a couple of sites with a folks dealing with DFSP with a wide variety of exeperiences if you want to check it out.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291

Good luck with surgery.
-Steve-

Thanks
Hi, Thanks very much for your response. I am really trying to get into a clinic to be assessed for possible MOHS surgery; but I can't get in until September!! I don't want to wait that long.

JC

Unknown

steenie said:

Hi JC
I too had a tumor (on
Hi JC

I too had a tumor (on my left shoulder). It was removed last summer with Mohs procedure by a doctor who was familiar with the tumor and the procedure. I urge you to find a surgeon who is familiar and has performed this surgery before. I feel confident that my Dr. not only knew what he was doing/dealing with, but also that he removed all of it. As low grade as this cancer is, we are fortunate that this is the "cancer" we have - if we must have cancer. But why not have the best take care of it from the beginning? YOU are worth it. Travel far if need be and have it done with the utmost confidence that you can live life with no worries. But do make your follow-up appointments for the next 3-5 years. I wish you the best.

Sincerely.

Thanks
Hi, I appreciate your reply. I want have the MOHS procedure, but I am finding it difficult to get into a physician to have it done soon. I really don't want to wait unti Septembr. I am willing to travel. It is so hard to find information about physicians who do this type of surgery. How did you find yours?

JC

steenie

unknown said:

Thanks
Hi, I appreciate your reply. I want have the MOHS procedure, but I am finding it difficult to get into a physician to have it done soon. I really don't want to wait unti Septembr. I am willing to travel. It is so hard to find information about physicians who do this type of surgery. How did you find yours?

JC

JC
I live in OR and went to
JC

I live in OR and went to the website of the cutting edge hospital in our state (OHSU) and looked up dermatologists' at this teaching hospital and found my Dr.. There were others on the site but i chose him by talking to his staff and my local dermatologist who supported me and forwarded my case to him. He called me back personally, and 1.5 months later i drove 3 hours (w/ my husband) had it removed and drove home the same night. I returned for follow up to procedure 2 more times and now will continue follow up check-ups with local dermatologist.

Good luck.
All the best.

ElizabethRay

chevypro101 said:

I'm a survivor! I was diagnosed 2 yrs ago with dfsp. Wide excision is what is recommended to treat this type of sarcoma. Other than surgery the only other option out there is radiation therapy. This cancer has an extremely high recurrence rate so that is why they need to be sure to get it all.

I had the wide excision of my dfsp which happened to be located on my left leg. A plastic surgeon is who performed my surgery and after I was healed from the surgery I follow up with an oncologist and my PCP. The down fall to the surgery (in my opinion) was the skin graft. It was painful to me. Where they removed the dfsp from was fine; it was where they took the skin graft from is what caused me the most pain.

The providers I went to were at Johns Hopkins Bayview Medical Center in Baltimore, MD. I highly recommend my plastic surgeon, Michele Shermak. Dr. Shermak discussed my case with my oncologist and other providers at Johns Hopkins. That is how they determined the best treatment plan for me. I was thoroughly explained all my options and what was recommended.

I saw that your dfsp was located on your left leg. Just over a month ago I had 2 back to back mohs surgeries to remove dfsp from my left lower leg and a skin graft a few days later to close the incision. The doctor who removed the sarcoma, a dermatologist, told me that it is highly unlikely for this type of cancer to reoccur and didn't recommend any follow ups. Since your dfsp was in a similar area as mine, I was wondering what your doctors told you about recurrence rates and follow up treatments as I am debating whether I should seek a second opinion. Any advice you can give me would be greatly appreciated.

Unknown

steenie said:

JC
I live in OR and went to
JC

I live in OR and went to the website of the cutting edge hospital in our state (OHSU) and looked up dermatologists' at this teaching hospital and found my Dr.. There were others on the site but i chose him by talking to his staff and my local dermatologist who supported me and forwarded my case to him. He called me back personally, and 1.5 months later i drove 3 hours (w/ my husband) had it removed and drove home the same night. I returned for follow up to procedure 2 more times and now will continue follow up check-ups with local dermatologist.

Good luck.
All the best.

Question
Hi, I found a surgeon who specializes in MOHS but I can't get in to see him until the end of August. My wide-margin surgery is scheduled for mid-July. I am very confused as I have read that the MOHS has a better outcome and brings a better prognosis. So, I don't know whether to go with the wide-margin or the MOHS. How much recovery time was there with the MOHS? Did you have extensive reconstruction? My lump is about 7cm, including the underlying mass. If I go with the wide-margin, they said there would be a softball size hole they would cover and reconstruct. I am leaning towards the MOHS, but I hate to wait another month. Any thoughts based on your experience as to which is preferable and why? Thanks. JC

steenie

unknown said:

Question
Hi, I found a surgeon who specializes in MOHS but I can't get in to see him until the end of August. My wide-margin surgery is scheduled for mid-July. I am very confused as I have read that the MOHS has a better outcome and brings a better prognosis. So, I don't know whether to go with the wide-margin or the MOHS. How much recovery time was there with the MOHS? Did you have extensive reconstruction? My lump is about 7cm, including the underlying mass. If I go with the wide-margin, they said there would be a softball size hole they would cover and reconstruct. I am leaning towards the MOHS, but I hate to wait another month. Any thoughts based on your experience as to which is preferable and why? Thanks. JC

Hi
That's great news. I am
Hi
That's great news. I am not qualified to compare the 2 different procedures. But from what I have read and discussed with my Dr.'s - Moh's was the route for me. My cut was a little over 10 cm wide and stitched with no graphing. I was home bound with little to no movement for my upper body for 1 1/2 weeks. Virtually no pain and healed great with best possible outcome. The size and location of your tumor sounds like a totally different case. Unless time is of the essence in your case, I would wait for the Moh's surgeon appointment. I'm surprised his/her staff didn't find an opening sooner for first consult. Are you on a list in case there is a cancellation? Maybe an earlier date will surface. Here's hoping.
steenie

Unknown

steenie said:

Hi
That's great news. I am
Hi
That's great news. I am not qualified to compare the 2 different procedures. But from what I have read and discussed with my Dr.'s - Moh's was the route for me. My cut was a little over 10 cm wide and stitched with no graphing. I was home bound with little to no movement for my upper body for 1 1/2 weeks. Virtually no pain and healed great with best possible outcome. The size and location of your tumor sounds like a totally different case. Unless time is of the essence in your case, I would wait for the Moh's surgeon appointment. I'm surprised his/her staff didn't find an opening sooner for first consult. Are you on a list in case there is a cancellation? Maybe an earlier date will surface. Here's hoping.
steenie

Hi,
Thanks fo rthe info.
Hi,

Thanks fo rthe info. I know that I will have flap reconstruction immediately following the surgery if I go with the wide-excision. The reconstructive surgeon is not going to graft, and I am glad of that; but since the surgeon has not done this type of surgery for this condition before, she has asked her superior to be there, too, and I am afraid she will take more than she has to.

Yes, I thought I could get in to a Mohs surgeon sooner, but one person at Hershey isn't available until September and the one at Geisinger isn't available until late August. I am on the cancellation call list, and I do hope I can get in sooner; but then I wonder if they will even do it. So, I play the waiting game and also have to make a hard decision within the next 10 days.

The reconstructive surgeon says I need to get this out now; I believe that, but I do think that most surgeons would have that view. Let's hope the Mohs surgeon is available soon!

Thanks for your good thoughts.

JC

sen0760

unknown said:

Hi,
Thanks fo rthe info.
Hi,

Thanks fo rthe info. I know that I will have flap reconstruction immediately following the surgery if I go with the wide-excision. The reconstructive surgeon is not going to graft, and I am glad of that; but since the surgeon has not done this type of surgery for this condition before, she has asked her superior to be there, too, and I am afraid she will take more than she has to.

Yes, I thought I could get in to a Mohs surgeon sooner, but one person at Hershey isn't available until September and the one at Geisinger isn't available until late August. I am on the cancellation call list, and I do hope I can get in sooner; but then I wonder if they will even do it. So, I play the waiting game and also have to make a hard decision within the next 10 days.

The reconstructive surgeon says I need to get this out now; I believe that, but I do think that most surgeons would have that view. Let's hope the Mohs surgeon is available soon!

Thanks for your good thoughts.

JC

hi JC
I have been reading a lot about DFSP. Surgery no doupt is the first option. Mohs is more favorable than wide excission. But there is another pre operation option which is gleevec( IMATINIB). The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe you can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22). Which causes an over production of PDGFB a growth factor that DFSP uses to survive and grow,which Gleevec inhibits. %80 of DFSP cases respond to it,shrinking the tumor size, and up to total remission. Again An operation is needed at the end, and you will live with the scar outcome. I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly. I guess your worries are about the best ways to reduce the operations outcome cosmetically and functionally.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

Unknown

sen0760 said:

hi JC
I have been reading a lot about DFSP. Surgery no doupt is the first option. Mohs is more favorable than wide excission. But there is another pre operation option which is gleevec( IMATINIB). The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe you can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22). Which causes an over production of PDGFB a growth factor that DFSP uses to survive and grow,which Gleevec inhibits. %80 of DFSP cases respond to it,shrinking the tumor size, and up to total remission. Again An operation is needed at the end, and you will live with the scar outcome. I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly. I guess your worries are about the best ways to reduce the operations outcome cosmetically and functionally.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

Hi Sen,
Thanks for your
Hi Sen,

Thanks for your reply. I will check into the Gleevec and will also try to see if I am get into the Mohs surgeon sooner than already scheduled.

I hope that your surgery goes well and I will keep you in my prayers.

JC

lacretia

ElizabethRay said:

I saw that your dfsp was located on your left leg. Just over a month ago I had 2 back to back mohs surgeries to remove dfsp from my left lower leg and a skin graft a few days later to close the incision. The doctor who removed the sarcoma, a dermatologist, told me that it is highly unlikely for this type of cancer to reoccur and didn't recommend any follow ups. Since your dfsp was in a similar area as mine, I was wondering what your doctors told you about recurrence rates and follow up treatments as I am debating whether I should seek a second opinion. Any advice you can give me would be greatly appreciated.

DFSP
Please get the follow ups. This cancer has a high reoccurence rate. My son has been dealing with this for of cancer for over 5yrs now and is currently taking Gleevac. It is also recommended that you see a oncologist that specializes in Sarcoma cancers as this is a rare cancer most physicians are not that familiar with it.

Unknown

sen0760 said:

hi JC
I have been reading a lot about DFSP. Surgery no doupt is the first option. Mohs is more favorable than wide excission. But there is another pre operation option which is gleevec( IMATINIB). The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe you can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22). Which causes an over production of PDGFB a growth factor that DFSP uses to survive and grow,which Gleevec inhibits. %80 of DFSP cases respond to it,shrinking the tumor size, and up to total remission. Again An operation is needed at the end, and you will live with the scar outcome. I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly. I guess your worries are about the best ways to reduce the operations outcome cosmetically and functionally.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

How did it go today?
Hello Sen,

How did it go today? Did you schedule your operation?

JC

Unknown

unknown said:

How did it go today?
Hello Sen,

How did it go today? Did you schedule your operation?

JC

Gleevec
Hi,

When I met with my physician, I asked about taking Gleevec. He said that it could shrink the tumors such that the smaller spindles could break off and it would be harder to get all of the cancer; so, I am assuming that it is effective with some tumors more than others. I just wanted to let everyone know what I was told in the hope that we can continue to ask these important questions of our physicians.

Take care.
JC

Jase75

DFSP
I am 33 and I was diagnosed with DFSP in July 2007. I had a lump in my upper left shoulder for 10 years, it grew slowly and eventually started hurting and I just felt as if something were wrong with my body. I went to the doc and he sent me to a surgeon. No one did a biopsy, but they decided it had to come out after a CT scan and an MRI. I had the surgery July 2, 2007, two weeks later at my follow up, I found out it was DFSP. They said they thought they had clear enough margins but the surgeon said if I were his family he would tell me to have another surgery. I did not want another one! I did get another opinion and this doc said I would be ok. I went to my follow ups religiously! Then I got laid off in Nov. 2008 and lost my insurance...I have not been to any more follow ups. But for the past month I have had a dull pain under my right arm, its not there every day, but the majority of the time it is. In the past few days I have noticed a lump under my arm and its hurting a little worse...getting a bit worried. Anyone else here have their DFSP spread????

Unknown

Jase75 said:

DFSP
I am 33 and I was diagnosed with DFSP in July 2007. I had a lump in my upper left shoulder for 10 years, it grew slowly and eventually started hurting and I just felt as if something were wrong with my body. I went to the doc and he sent me to a surgeon. No one did a biopsy, but they decided it had to come out after a CT scan and an MRI. I had the surgery July 2, 2007, two weeks later at my follow up, I found out it was DFSP. They said they thought they had clear enough margins but the surgeon said if I were his family he would tell me to have another surgery. I did not want another one! I did get another opinion and this doc said I would be ok. I went to my follow ups religiously! Then I got laid off in Nov. 2008 and lost my insurance...I have not been to any more follow ups. But for the past month I have had a dull pain under my right arm, its not there every day, but the majority of the time it is. In the past few days I have noticed a lump under my arm and its hurting a little worse...getting a bit worried. Anyone else here have their DFSP spread????

Hi Jase75,I am sorry this
Hi Jase75,

I am sorry this has happened to you; and I hope that you can find a way to go to have it checked. Actually, I have found that health care facilities are reducing costs of care for people who are unemployed, so perhaps you could find someone to do a check up for free or low cost. Some physicians might also do it pro bono, although I know that doesn't happen often; but perhaps there is a way for you to get the help and not worry about the payment. Some facilities are better than others in this regard.

I do know that the American Cancer Society does provide some financial support for people going through treatment for cancer, although the payment is based on income; however, if you call them you can tell them about your situation and ask for someone to see you given your situation. Also, they have lists of organizations in particular communities that provide assistance for people who have cancer, or are cancer survivors like yourself.


Since this is my first (after having a tumor for 20 years) experience with DFSP, I cannot answer your question about spreading; but it can reoccur, so I pray that you will get a check up soon.

Please keep us posted. I will keep you in my thoughts and prayers.

JC

sen0760

unknown said:

Hi Jase75,I am sorry this
Hi Jase75,

I am sorry this has happened to you; and I hope that you can find a way to go to have it checked. Actually, I have found that health care facilities are reducing costs of care for people who are unemployed, so perhaps you could find someone to do a check up for free or low cost. Some physicians might also do it pro bono, although I know that doesn't happen often; but perhaps there is a way for you to get the help and not worry about the payment. Some facilities are better than others in this regard.

I do know that the American Cancer Society does provide some financial support for people going through treatment for cancer, although the payment is based on income; however, if you call them you can tell them about your situation and ask for someone to see you given your situation. Also, they have lists of organizations in particular communities that provide assistance for people who have cancer, or are cancer survivors like yourself.


Since this is my first (after having a tumor for 20 years) experience with DFSP, I cannot answer your question about spreading; but it can reoccur, so I pray that you will get a check up soon.

Please keep us posted. I will keep you in my thoughts and prayers.

JC

hello JC and Jase75
Hello all :
My surgery is scheduled on the 28 next tuesday. It will be a wide Excission with Skin flap from my back. The flap will be rolled under
My upper chest ,the neck to cover my left jaw face area with all its arteries
And veins attached.
Well the oncologist suggested surgery then imatinib as adjuvant.
Yes I am too worried if I took the best decision. My surgeon
Said semi moh will be performed, only examinning suspected
Margins during surgery.
Jase75 It is a very long distance to metastize from the left shoulder
To the right. Usually it will go to the lungs or local. I think it is
Something else.
JC I will try to stay in touch on MSN
hosain719@hotmail.com
Best luck all and God bless

Unknown

sen0760 said:

hello JC and Jase75
Hello all :
My surgery is scheduled on the 28 next tuesday. It will be a wide Excission with Skin flap from my back. The flap will be rolled under
My upper chest ,the neck to cover my left jaw face area with all its arteries
And veins attached.
Well the oncologist suggested surgery then imatinib as adjuvant.
Yes I am too worried if I took the best decision. My surgeon
Said semi moh will be performed, only examinning suspected
Margins during surgery.
Jase75 It is a very long distance to metastize from the left shoulder
To the right. Usually it will go to the lungs or local. I think it is
Something else.
JC I will try to stay in touch on MSN
hosain719@hotmail.com
Best luck all and God bless

Thanks and Best Wishes
Hi Sen,

Thanks very much for the update. I will be emailing you to check in. I will keep you in my prayers.

JC

siege

unknown said:

Gleevec
Hi,

When I met with my physician, I asked about taking Gleevec. He said that it could shrink the tumors such that the smaller spindles could break off and it would be harder to get all of the cancer; so, I am assuming that it is effective with some tumors more than others. I just wanted to let everyone know what I was told in the hope that we can continue to ask these important questions of our physicians.

Take care.
JC

Gleevec
Hi all --

I was intrigued by the comment about Gleevec causing spindle cells to break off, since a doctor that I met with said something similar.

So, today, when I met with an oncologist, I asked him specifically about it. Here is his answer (as close to verbatim as I can remember): Any tumor has the possibility of cells breaking off and travelling through the body, this is how cancers metasticize. With Gleevec, given the way it works, the drug neutralizes the cells, so that they are no longer cancerous. It works that way no matter where they are in the body.

We had additional discussion about it; the bottom line is that Gleevec does not make it any more likely that cells will break off from tumors, and is likely to help get rid of any that have done so on their own.

I hope this is helpful.

(My DFSP is on my right temple, I was meeting with the oncologist to enroll in a clinical trial; I will take Gleevec for two weeks before my surgery next month).

Carrie

sen0760

unknown said:

How did it go today?
Hello Sen,

How did it go today? Did you schedule your operation?

JC

SEN surgery
Hello JC
The surgery will be on the 28 next tuesday. It will be by wide
Excission. But suspected margins will checked by microscope
During the operation( semi MOH)M Skin flap will cover the scar,
Which will cut from my upper back and rolled up under the skin
This way will stay attached to its veins. - consulted 2 oncologist
And both prefer operation then treatmentm Unless the site is not operable
.
There was jase75 here, well it is so hard to metastize from the left
Shoulder to. The right. Usually to the lungs.
Well take care JC .
You are in my thoughts and preyors
Hosain719@hotmail.com feel free to MSN .

beabaker

codyredd421 said:

So Frustrating
Wow, I am glad that I'm not alone in being totally confused about all this! I am 23 years old and was diagnosed with DFSP 5 months ago. Ever since that day that I found out what this lump on my back was (which had been there for over TEN YEARS and was misdiagnosed as scar tissue from a broken rib when I was in middle school!) I feel like every person or doctor that I have spoken with has a different story or theory about what to do about all this. It's so frustrating! I am lucky that I am feeling better lately but I went through three surgeries (one with a general surgeon, two with a plastic surgeon) After the third surgery, my surgeon called and said that he had gotten clear margins (finally) I was was then sent to see a radiologist. This radiologist then told me that my plastic surgeon had only gotten 3 milimeters past the cancerous tissue and then he told me that was "completely inadequate" and that I needed to go back to my surgeon and have ANOTHER surgery done to get further past the cancer! I was so confused. I went back to my surgeon who then told me that he had already scraped the muscle on my back and had removed ALL the fat and fascia and that if he did another surgery, he would be cutting "blindly" into muscle and I would most likely lose most of the function of my left arm (just a side note: I'm a hair stylist, so losing function of my arm...no an option if at all possible) I was pissed and felt like these doctors hadn't even spoken to one another. Two days later I saw my oncologist who told me he was going to take charge. He then told me that I needed 33 treatments of local radiation. I completed that almost exactly one month ago. Now I have no idea where I really stand. I can't have a pet scan until August and I'm getting married in May. It's just all so frustrating! Why is there no general concencus on this disease! I understand that it's a complex disease but I just wish that someone could give me some more CONCRETE answers. I doubt this helps anyone, but I have been looking for other survivors to vent with...thanks.

Share your frustration
Hi Codyredd
I hope you're doing well. This is my first post, and your message (of all these helpful messages) is the most similar to my experience.

When I was 26 I noticed a small lump on my back and was told by my doctor that it was a harmless cyst. Within weeks it had grown a lot, and clearly was anchoring itself in place, I could no longer wiggle it around. I was really alarmed because my mom died of breast cancer quite young. I had it excised a few weeks later by a surgeon who patronized me with a lot of talk about wanting to avoid scars. Even without knowing about DFSP, I knew I wanted a very conservative approach - I asked him to please take as much tissue as he needed to get it all; I didn't care about a scar. The tumor by then had grown through the fat and into my muscle. Sadly, I learned a few weeks ago that he left only a 0.5mm margin. The doctor who made the diagnosis of that tumor in 1995 mistook it for a dermatofibroma, and told me it was harmless. I sort of forgot about it for years.

Now I am 41 and have had no re-occurrence on my back. But I recently started to worry about a similar lump on my left leg that has been there for 6 years. Again, at first I was dismissed by my doctor and told that it's just a cyst. I have insisted that it be removed, and it will come off in Sept. I am really frustrated by the lack of "homework" by doctors; the dermatologist I saw this month for my leg lump had never heard of DFSP. Now I know I was very, very lucky to have no return on my back, despite a very small margin. I'm trying to get someone to look at my first pathology report. I am wishing I had done radiation back when that first lump, on my back, was removed. My fingers are crossed that the lump in my leg tests negative.

I don't feel I deserve to call myself a cancer survivor, because I only just found out that I had it back in '94. But I thank all on this forum who have posted your comments. My prayers are with you. If anyone has had lumps appear in another limb, can you describe if the second looked just like the first? Or if you found a good doctor near Boston, Massachusetts, please reply.
Thank you.