DFSP Friends.

gayled627

natmcg said:

gayled627,airforcewifeky,cmguy777,giffer
Hi DFSP survivors, I've posted this with the names of the most resent members so if you or a new DFSP person logs on our thread will still be near the top. But the other thread will always be somewhere further down the list, and will probably still be used as well. There is only a small group of us here who have recently delt with DFSP or still are dealing with this rear skin cancer. For those of you who are still waiting to finish your treatment I wish you well and a speedy recovery.

I hope you all have a Happy and Safe Festive Season.
Best wishes for the New Year

Natalie.

There is a dfsp Facebook group with +600 members

I haven't been on this site for a couple years, but I recall how hard it was to communicate in any orderly fashion.  I've been part of a group on Facebook called "dfsp - dermatofibrosarcoma protuberans".  There are over 650 members from all over the world.  It's a great place for support, information or just an ear to listen.  Please feel free to put in a request to join this group.  It a much more active place than is discussion board.  It saved me while I went thru all 3 of my surgeries.  I am what we call a "headcase".   My tumor was on  my forehead and I'm only a bit over one year post-op.  dfsp is found in 1-3 per million people so this FB group is amazing to have so many in our situations.  WELCOME ONE AND ALL!!!   Posted: 06.29.14

Sylviajo37

Dfsp in breast

I was diagnosed with dfsp in September 2013 and had three surgerys to get clear margins. I know it is a rare type of cancer but I guess it is even more rare to get it in ur breast. My onocologist feels that they got enough clear margins but I know the more they get the better. My onocologist scheduled to see me in a year but it seems like other people r being seen earlier than that and having other tests done. I am thinking of getting a second opinion from an oncologist that specializes in sarcomas. Has anyone else had these issues??

natmcg

Sylviajo37 said:

Dfsp in breast

I was diagnosed with dfsp in September 2013 and had three surgerys to get clear margins. I know it is a rare type of cancer but I guess it is even more rare to get it in ur breast. My onocologist feels that they got enough clear margins but I know the more they get the better. My onocologist scheduled to see me in a year but it seems like other people r being seen earlier than that and having other tests done. I am thinking of getting a second opinion from an oncologist that specializes in sarcomas. Has anyone else had these issues??

DFSP in breast

Hi Sylviajo37, 

I had myDFSP just under my left breast. Clear margins after two surgeries. ( the second surgery was mohs)  My dr was (is) a sarcoma specialist.He recomended 6monthly checkups. Then after a year, 12mth checkups for five yrs  because most recurrences seem to happen in the first 5yrs after removal of DFSP.  I did not see an oncologist at all. My Dr has had previous experience with DFSP so I have not seen any one else and so fsr have not needed any other treatments. Its totaly up to you  , but if you can see a sarcoma specialist, or even discuss it with your oncologist again again, and it will put your mind at rest then why not. Better to be safe.

I hope all continues to go well.

Kind regards

Nstalir.

 

natmcg

book_nerd13 said:

DFSP metastasis

Hi everyone,

I'm 23 years old and I was diagnosed with DFSP almost 2 years ago. I had MOHS surgery and they removed about 5 inches from my calf. Lately I have been having excruciating pain in the same area. There are no bumps that can be felt. I'm waiting for an appointment with the specialist that originally diagnosed me to evaluate for bone mets. Has anyone else had mets to the bone with dfsp that can share their experience? Thank you

Mets to calf

Hi, I havent had any problems since my DFSP was removed ( from under my breast) so am just wtittong to hive uoi some moral support. its been a while since your post, so hopfully you have some answers by now. 

 

Kindregards  Nstalie

 

Sylviajo37

natmcg said:

DFSP in breast

Hi Sylviajo37, 

I had myDFSP just under my left breast. Clear margins after two surgeries. ( the second surgery was mohs)  My dr was (is) a sarcoma specialist.He recomended 6monthly checkups. Then after a year, 12mth checkups for five yrs  because most recurrences seem to happen in the first 5yrs after removal of DFSP.  I did not see an oncologist at all. My Dr has had previous experience with DFSP so I have not seen any one else and so fsr have not needed any other treatments. Its totaly up to you  , but if you can see a sarcoma specialist, or even discuss it with your oncologist again again, and it will put your mind at rest then why not. Better to be safe.

I hope all continues to go well.

Kind regards

Nstalir.

 

DFSP in breast

Nstalir

 

Thank you for ur response. I am still waiting for a second opinion but I'm glad to know uve had good luck it gives me a positive outlook.

 

Sylvia

sayanti

DFSP in scalp

I am in dire need of some advice and help. I had a small tumour on the front part of my scalp which was there for the past 15 years. Suddenly it started to grow in the past few months. My GP removed it thinking it was a cyst. After an initial biopsy, it was inconclusively stated that its a low grade fibrosarcome arising in DFSP.

After that I went to a surgical oncologist who suggested me a 2 cm margin surgery with radiation therapy.

I read up a lot about Mohs surgery and understood that since its a deep tissue cancer, just a skin excision might not be the right approach. I then was referred to a Mohs surgeon, who told me some completely differnt treatment called delayed repair which means that they will excise part of the tumour and test. Then excise more if needed.She does not do Mohs surgery on DFSP and said that supposedly noone in Australia does not.

I have never had any MRI done on the tumour, neither any body scans etc to test if the cancer has spread elsewhere.

Can someone please suggest a Mohs surgeon in Australia who does Mohs surgery on DFSP. All the people I have met are inexperience and just want to go into surgery w/o doing any proper testing.

My path report was very inconclusive and the pathologist said that its recommended that you remove 1 cm around the tumour to be safe. Now things have gone to Radiation therapy of my head which will make me lose hair and can lead to further complications.

I am based out of a small little town of Adelaide and I doubt I am getting the right tests/advice for this matter.

Please suggest me a doctor and hospital in Australia who has dealt with this.

Also if someone knows a doctor in US/UK who have expertise in this, I am open for that as well

natmcg

sayanti said:

DFSP in scalp

I am in dire need of some advice and help. I had a small tumour on the front part of my scalp which was there for the past 15 years. Suddenly it started to grow in the past few months. My GP removed it thinking it was a cyst. After an initial biopsy, it was inconclusively stated that its a low grade fibrosarcome arising in DFSP.

After that I went to a surgical oncologist who suggested me a 2 cm margin surgery with radiation therapy.

I read up a lot about Mohs surgery and understood that since its a deep tissue cancer, just a skin excision might not be the right approach. I then was referred to a Mohs surgeon, who told me some completely differnt treatment called delayed repair which means that they will excise part of the tumour and test. Then excise more if needed.She does not do Mohs surgery on DFSP and said that supposedly noone in Australia does not.

I have never had any MRI done on the tumour, neither any body scans etc to test if the cancer has spread elsewhere.

Can someone please suggest a Mohs surgeon in Australia who does Mohs surgery on DFSP. All the people I have met are inexperience and just want to go into surgery w/o doing any proper testing.

My path report was very inconclusive and the pathologist said that its recommended that you remove 1 cm around the tumour to be safe. Now things have gone to Radiation therapy of my head which will make me lose hair and can lead to further complications.

I am based out of a small little town of Adelaide and I doubt I am getting the right tests/advice for this matter.

Please suggest me a doctor and hospital in Australia who has dealt with this.

Also if someone knows a doctor in US/UK who have expertise in this, I am open for that as well

In need of help!

Hi sayanti,

Wow what a worring situation you have found yourself in.

I strongly suggest you do nothing untill you talk to someone who is familiar with DFSP. From what you have written I am very concerned these Doctors your dealing with do not know much (if anything ) about DFSP. 

Its not unusual for DFSP to me misdiagnosed when just looked at, because it can present its self so differently in size & colour on the surface of ones skin. 

But what is most worring in your situation for me are two things in particular.

1.DFSP can be misread by pathologist who are not farmiliar with it, or have not been asked to do the correct testing (cant remember the name of the test just now).

2. The suggestion of part removal then more if needed without clear margins as the goal....oh no...that sounds so wrong. This person is not familiar with sarcomas and or DFSP.  The whole point of mohs surgery (or any surgery) on DFSP is to achieve CLEAR margins!!!

In my case my mohs surgon got clear margins after the first excision, but suggested he take a bit more tissue away all around before closing my wound and I agreed. Better to be safe, and it didnt make much difference to the scare size.

I feel a second opinion from a Sarcoma/DFSP specialist is what you need before you do anything. (Just my opinion of course, Im not a profesional just a DFSP survivor).

I wont go on and on I think you already know you need to make more enquiries. I have sent you a personal message with details about my Dr. Hope this bit of info has helped in some way. Dont worry your on the right track to getting a good result. One thing we all had(and you have) in our favour is that DFSP is a very slow growing cancer (compared to others) and you  are aware of it now. You can get the help you need.

Take care, keep in touch

Natalie.

 

sayanti

Thanks Nat

Hi Nat,

Yes I got your private message yesterday and I will be contacting your doctor today. Thanks for that and you are a lifesaver.

Well to start with I live in Adelaide. There is hardly any expertise on much diseases here, specially on these rare cases.

I had the most lazy GP ever who did not research on DFSP for even 1 min. He send me to a surgeon who directly said I needed 4 cm margin excision and radiotherapy. I was shocked as I have read much worse cases of DFSP who have not done RT.

My tumour was a real small one, and was there for 15 years before it actually became bigger and noticable. The pathologist who ran the test was not even conclusive and said at max its a low grade fibrosarcome arising in DFSP. My GP said that the pathologist said that its a very low grade tumour and removing around 1 CM around it will solve the issue.

I then started to do a lot of research as its on a very visible part of my scalp. I got hold of a document from National Health Service in London which describes MOHS as the only treatment for DFSP which can lead to long term non recurrance. Then I contacted my GP again and said I want to do Mohs on this one as its the best treatment and will also lead to tissue preservation(its on my scalp and a 4 cm perimeter circle is so difficult to hide).

In Adelaide, there are only 2 surgeons who do Mohs. He sent me to one of them. By that time, I had given him documentation on best treatment for DFSP as I am 100% certain he did not do any research yet.

He then sent me to a dermatologist here. She said that she does not do Mohs on DFSP, she can only do a delayed repair removal which basically is a local excision done in 2-3 stages. Its painful and delayed for no reason and not even in any recommended treatments. The worst part is that my GP forgot to send my path reports to her, so all her analysis was basically given within 2 mins of actually reading the report in front of me.

She has actually given a treatment which is used for some other type of skin cancer which spreads through the lymph glands. That was even written in her documentation. She made me sign a consent form saying that I should do the surgery next week as she is not available for a few weeks after that due to appointments. She is no more than a salesperson who is trying to hardsell a product you basically don't need.

I have had the worst experience of getting this treated in Adelaide.On the hindsight, I think I should have not even tried to treat it by a person who has no experience with DFSP/sarcomas and going bookish about it.

Thanks to you I will contact your doctor who has experience in dealing with such cases and the expertise to do a Mohs surgery.

Thanks so much for your fast replies. I thought I was the only one is Australia who has this problem. Was almost ready to go to UK for treating it in Birmingham hospital

 

sayanti

natmcg said:

DFSP in breast

Hi Sylviajo37, 

I had myDFSP just under my left breast. Clear margins after two surgeries. ( the second surgery was mohs)  My dr was (is) a sarcoma specialist.He recomended 6monthly checkups. Then after a year, 12mth checkups for five yrs  because most recurrences seem to happen in the first 5yrs after removal of DFSP.  I did not see an oncologist at all. My Dr has had previous experience with DFSP so I have not seen any one else and so fsr have not needed any other treatments. Its totaly up to you  , but if you can see a sarcoma specialist, or even discuss it with your oncologist again again, and it will put your mind at rest then why not. Better to be safe.

I hope all continues to go well.

Kind regards

Nstalir.

 

Hi Nat,
How did you come to

Hi Nat,

How did you come to know of the sarcoma specialist. Did your GP refer to him or you researched him out?

natmcg

sayanti said:

Thanks Nat

Hi Nat,

Yes I got your private message yesterday and I will be contacting your doctor today. Thanks for that and you are a lifesaver.

Well to start with I live in Adelaide. There is hardly any expertise on much diseases here, specially on these rare cases.

I had the most lazy GP ever who did not research on DFSP for even 1 min. He send me to a surgeon who directly said I needed 4 cm margin excision and radiotherapy. I was shocked as I have read much worse cases of DFSP who have not done RT.

My tumour was a real small one, and was there for 15 years before it actually became bigger and noticable. The pathologist who ran the test was not even conclusive and said at max its a low grade fibrosarcome arising in DFSP. My GP said that the pathologist said that its a very low grade tumour and removing around 1 CM around it will solve the issue.

I then started to do a lot of research as its on a very visible part of my scalp. I got hold of a document from National Health Service in London which describes MOHS as the only treatment for DFSP which can lead to long term non recurrance. Then I contacted my GP again and said I want to do Mohs on this one as its the best treatment and will also lead to tissue preservation(its on my scalp and a 4 cm perimeter circle is so difficult to hide).

In Adelaide, there are only 2 surgeons who do Mohs. He sent me to one of them. By that time, I had given him documentation on best treatment for DFSP as I am 100% certain he did not do any research yet.

He then sent me to a dermatologist here. She said that she does not do Mohs on DFSP, she can only do a delayed repair removal which basically is a local excision done in 2-3 stages. Its painful and delayed for no reason and not even in any recommended treatments. The worst part is that my GP forgot to send my path reports to her, so all her analysis was basically given within 2 mins of actually reading the report in front of me.

She has actually given a treatment which is used for some other type of skin cancer which spreads through the lymph glands. That was even written in her documentation. She made me sign a consent form saying that I should do the surgery next week as she is not available for a few weeks after that due to appointments. She is no more than a salesperson who is trying to hardsell a product you basically don't need.

I have had the worst experience of getting this treated in Adelaide.On the hindsight, I think I should have not even tried to treat it by a person who has no experience with DFSP/sarcomas and going bookish about it.

Thanks to you I will contact your doctor who has experience in dealing with such cases and the expertise to do a Mohs surgery.

Thanks so much for your fast replies. I thought I was the only one is Australia who has this problem. Was almost ready to go to UK for treating it in Birmingham hospital

 

Hello again Sayanti, 
I am so

Hello again Sayanti, 

I am so pleased I have been able to help you, im sure once you are able to speak to Dr Stanford your mind will be much more at ease. Travelling to Sydney will be a lot easier, less stressfull and cheaper than UK or US. I still have shivers when I read what you have been through. Like you I thought I was the only person in Australia to have dfsp. I googled way to much and scared the hell out of myself in the first week of being diagnosed. Then I came across this site,again  I read some pretty awful stuff, but with a much more positive outlook. (also tried facebook but found that wasnt for me, Im a bit put off with too much interaction on the net). this forum has helped me in lots of ways...just to know people truely understand is a great comfort.

I was fortunate that the Dr doing my full body skin check had seen dfsp once before and insisted on the right Path test (which took almost 2wks before we had the results). Then he recomended I see Dr.Stanford.  It was only by my request that my skin specialist did the first  excision with the correct margins in mind (I had a ovee aeas trip planned and wanted the dfsp thing gone!!!). Well my plan back fired because clear margins were no achieved (not the docs fault, I should have listened to his advice) To cut a long story short...the dfsp had made its way into fatty tissue under and around the raised tumors (small but nasty things). Mine was under my breast so the scare is not an issue. Its about 7inchs long and has a bit of a dip due to  fatty tissue removal. But at least it stopped there and didnt get into  bones or organs. I have not any MRIs, but it may be an option if I have any problems in years to come. I should mention that at my last checkup Dr.Stanford introdused me to a new Dr. (cant remember his name) from England that had been resarching and documenting dfsp for many years and was now working in Australia. That was very reasuring for me,even though I have complete confidence in Dr.Stanford.

As I mentioned your not alone...one of the reasons I check in from time to time is bexause I will never forget the day I was told "you have a very rare type of skin cancer" and all the emotions that go with that statement. But I got through it with the help of my drs, family,and support and info I gained from this site. And you will make it through as well. It might take a while, be patient, because it looks like this might take a while to get sorted(due to the lack of expertise in this area with the Drs you have been dealing with so far).

Your on the right track now!!

Kind regards

Natalie.

 

sayanti

natmcg said:

Hello again Sayanti, 
I am so

Hello again Sayanti, 

I am so pleased I have been able to help you, im sure once you are able to speak to Dr Stanford your mind will be much more at ease. Travelling to Sydney will be a lot easier, less stressfull and cheaper than UK or US. I still have shivers when I read what you have been through. Like you I thought I was the only person in Australia to have dfsp. I googled way to much and scared the hell out of myself in the first week of being diagnosed. Then I came across this site,again  I read some pretty awful stuff, but with a much more positive outlook. (also tried facebook but found that wasnt for me, Im a bit put off with too much interaction on the net). this forum has helped me in lots of ways...just to know people truely understand is a great comfort.

I was fortunate that the Dr doing my full body skin check had seen dfsp once before and insisted on the right Path test (which took almost 2wks before we had the results). Then he recomended I see Dr.Stanford.  It was only by my request that my skin specialist did the first  excision with the correct margins in mind (I had a ovee aeas trip planned and wanted the dfsp thing gone!!!). Well my plan back fired because clear margins were no achieved (not the docs fault, I should have listened to his advice) To cut a long story short...the dfsp had made its way into fatty tissue under and around the raised tumors (small but nasty things). Mine was under my breast so the scare is not an issue. Its about 7inchs long and has a bit of a dip due to  fatty tissue removal. But at least it stopped there and didnt get into  bones or organs. I have not any MRIs, but it may be an option if I have any problems in years to come. I should mention that at my last checkup Dr.Stanford introdused me to a new Dr. (cant remember his name) from England that had been resarching and documenting dfsp for many years and was now working in Australia. That was very reasuring for me,even though I have complete confidence in Dr.Stanford.

As I mentioned your not alone...one of the reasons I check in from time to time is bexause I will never forget the day I was told "you have a very rare type of skin cancer" and all the emotions that go with that statement. But I got through it with the help of my drs, family,and support and info I gained from this site. And you will make it through as well. It might take a while, be patient, because it looks like this might take a while to get sorted(due to the lack of expertise in this area with the Drs you have been dealing with so far).

Your on the right track now!!

Kind regards

Natalie.

 

Thanks Nat

Hi Nat,

As I said, my journey has been one full of confusion. I am a migrant in Australia and do not have any family here. Its just me and my husband(poor chap) taking all decisions. So taking a decision and sticking to it gets very tough.

I have been told by multiple people not to travel to Sydney and get treated in Adelaide by a dermo surgeon here who is very well known. But you know what she suggested is not recommended treatment for DFSP by any standards.

I have taken an appointment with Dr Duncun at his Kiama clinic on the 8th of Sep. Will be travelling to Sydney on the 7th. I am hopeful that he would be able to help me.

I have been discouraged to visit him from even my extended family here who is herself a dermo. She mentioned that even Dr Duncun might not perform Mohs in one sitting due to problem of staining for DFSP which takes overnight. If I did not have your reference, I would have believed her and may have dropped the idea of the trip.

Doctors sometimes think they know everything about everything, and the moment you mention that you have read something on a forum, they get suspicious about it.

Another issue I have had is that my Path report was very inconclusive. My pathlogist did immunostains(think thats what you are talking about) and still said that it might be indicative of low grade fibrosarcoma arising in DFSP. 

I am scared to death for the past few weeks, have been a wreck and have driven my husband crazy. He are both 30 something professionals and have no experience in such matters. Our parents are in India and they are very scared as well.

I just hope that I can do Mohs on my DFSP and can get clean margins within 1 cm of the tumour(the tumour was around 1cm Diameter).And I hope it has not penetrated the bone. Its such a scary thought and I feel that I am in a nightmare. I don't know why all this happened to me at this age, that too when I am in a country where I have absolutely no support system.

Doctors here have been continuously discouraging us to go to Sydney or anywhere for treatment for this. They are absolutely confident that this can be treated in Adelaide. I refused to believe that as in a town of around 1.2 M people, I might be the only person who has ever had this.

I pray that Dr Duncun is not one of these money grabbing surgeons I have been meeting(met two of them already in Adelaide). All they are interested is to make me go into surgery, without giving me a comprehensive plan of whats the treatment after surgery. Do I need radiothgerapy? Do I need Chemotherapy? They don't know and they say they will try not to give me radiation.

I am a young girl, I fear that if I have radiation, I will lose a lot of hair on my scalp...and all they say is that its fixable by reconstruction now-a-days. Is that the way a person goes into surgery here, not knowing whats going to happen when they come out of it.

I think the docs here have been extremely narrow minded, refused to do any MRIs, any skin checks, nothing. Just push me into surgery the next available date on their calender. That too not because its urgent for me, but because its urgent for them. This is the worst kind of experience I have ever had.

I have a lot of hopes pinned on Dr Duncun, maybe it will be good to talk to someone who has actually seen a sarcoma before.

Regards

Sayanti

 

sayanti

Ontario48 said:

Will push for chest screen...

Hey Nat, hope you are finding some back relief to get some sleep in.

It's pouring here, half the snow is gone...soooo happy!!  I have decided that once I get hooked up with the dermo guy I will insist on a chest scan.  The more I read about this part the more I think it's the opinion of the doc.  And when you consider that there really aren't too many experts out there on the subject, what would it hurt to just do it for piece of mind.  Even though most are done with the FS variant or after recurrance, there is still a small percentage that have positive results.  The decision is based on a thorough history which my surgeon didn't do as I only saw him for 8 min, LOL (his interns did the great work). 

We are a small percentage anyway and we got it.  Sarcoma is very rare, even rarer in adults and DFSP even still rarer than that.  SO even though they say a 1-5% chance of spread elsewhere...we made it into the 1% of all sarcomas, and then the 1% of those that are DFSP.  For me, I can do the wait, if reoccurence is in the cards it is what it is...can't control that.  If a chest screen gives me comfort, to rule out that possibility, then it should be done.  If the dermo wont' to it, I am confident my GP will.  All in all, even those who have a "spread" the possibility of treatment and successful removal is still very high.  It's a very, very small pool that do not survive this type of cancer and most have left it way too long (in obscure parts of the world...I am sure you've seen the pictures) or there were other health complications as well.

Anyhow, will keep you posted on that bit.  They boy is on the hills of Jay Peak in Vermont and mommy is missing him terribly.  Happy March break to those who get one this week.

Cheers, Jo

Hi Ontario,
I asked my GP

Hi Ontario,

I asked my GP about the chest scans. What he mentioned was that CT scans have radiation as well and its like taking around 200 Xrays. So unless they really suspect the spread of DFSP, they do not suggest to do any of those scans. What he mentioned was " we give people cancer by doing these scans"

natmcg

sayanti said:

Thanks Nat

Hi Nat,

As I said, my journey has been one full of confusion. I am a migrant in Australia and do not have any family here. Its just me and my husband(poor chap) taking all decisions. So taking a decision and sticking to it gets very tough.

I have been told by multiple people not to travel to Sydney and get treated in Adelaide by a dermo surgeon here who is very well known. But you know what she suggested is not recommended treatment for DFSP by any standards.

I have taken an appointment with Dr Duncun at his Kiama clinic on the 8th of Sep. Will be travelling to Sydney on the 7th. I am hopeful that he would be able to help me.

I have been discouraged to visit him from even my extended family here who is herself a dermo. She mentioned that even Dr Duncun might not perform Mohs in one sitting due to problem of staining for DFSP which takes overnight. If I did not have your reference, I would have believed her and may have dropped the idea of the trip.

Doctors sometimes think they know everything about everything, and the moment you mention that you have read something on a forum, they get suspicious about it.

Another issue I have had is that my Path report was very inconclusive. My pathlogist did immunostains(think thats what you are talking about) and still said that it might be indicative of low grade fibrosarcoma arising in DFSP. 

I am scared to death for the past few weeks, have been a wreck and have driven my husband crazy. He are both 30 something professionals and have no experience in such matters. Our parents are in India and they are very scared as well.

I just hope that I can do Mohs on my DFSP and can get clean margins within 1 cm of the tumour(the tumour was around 1cm Diameter).And I hope it has not penetrated the bone. Its such a scary thought and I feel that I am in a nightmare. I don't know why all this happened to me at this age, that too when I am in a country where I have absolutely no support system.

Doctors here have been continuously discouraging us to go to Sydney or anywhere for treatment for this. They are absolutely confident that this can be treated in Adelaide. I refused to believe that as in a town of around 1.2 M people, I might be the only person who has ever had this.

I pray that Dr Duncun is not one of these money grabbing surgeons I have been meeting(met two of them already in Adelaide). All they are interested is to make me go into surgery, without giving me a comprehensive plan of whats the treatment after surgery. Do I need radiothgerapy? Do I need Chemotherapy? They don't know and they say they will try not to give me radiation.

I am a young girl, I fear that if I have radiation, I will lose a lot of hair on my scalp...and all they say is that its fixable by reconstruction now-a-days. Is that the way a person goes into surgery here, not knowing whats going to happen when they come out of it.

I think the docs here have been extremely narrow minded, refused to do any MRIs, any skin checks, nothing. Just push me into surgery the next available date on their calender. That too not because its urgent for me, but because its urgent for them. This is the worst kind of experience I have ever had.

I have a lot of hopes pinned on Dr Duncun, maybe it will be good to talk to someone who has actually seen a sarcoma before.

Regards

Sayanti

 

Sayanti...My opinion (for what its worth)

Poor Sayanti,

I feel your confusion and dispare. I know how you are feeling I felt exactly the same. I have a husband and grow up children but truly the most comfort I got came from Dr Stanford and people here on this forum. People who also had/have DFSF. There really isnt any support groups in Australia so this site was a blessing for me.

 I am so glad you are able to get in to see Dr Duncan Stanford so soon I'm very, very confidant that he will answer all your questions and put your mind at ease somewhat. He is experienced in dealing with DFSF, he is expericenced in Mohs (and other skin cancers and surgery of cause.)Honestly I dont think that your well meaning family member has done her research on DFSF.  This is a "spindle cell sarcoma" and needs to be treated correctly from the start. If you can find someone in Adelaide who at least as experienced as Dr Stanfort then there would be no need to travel to Sydney and Kiama ( Kiama is about 3hrs south of Sydney by train or car). But from what you have said no one knows of a doctor closer to you that you could see and be confident with.

Just to give you a better idea of what to expect I will tell you how things proceeded for me. As I already mentioned after a positive pathology for DFSF I insisted my Dr try removing it, but we did not get clear margins.  So off to see Dr. Stanford i went. After explaining every thing very clearly, including the cost, his receptionist booked me into Westmead Private Cancer Hospital. 3 weeks later I arrived at the Hospital at 7am.(It was about a 2hr drive from my home) I was taken to a nice waiting room where there were 2 or 3 other patients. I was given a gown to put on and then waited (hubby was with me the whole time). I was taken into the operating theater where Dr Stanford administered the local anistetic (lots of it as you stay awake during the operation). He also offered me some valium which I gladly accepted as I was feeling very anxious. He explained again what he was about to do, but by then the valium had taken affect and I was quite happy for him to do what ever he needed. He removed as much as he thought necessary but did not close the wound. I was bandaged up very tightly and taken back to the waiting room. I waited there driffting in and out of sleep for over 3hrs while pathology was beening done. Finaly they had results and he was happy with the margins,  and I was taken back into thearter to have my would stitched up. And as I mentioned before Dr Stanford is thourough so he removed more tissue from the area before closing the wound. 

I rested in the waiting room for an hour or so, and after being check by a nurse to make sure my wound wasnt bleeding I was aloud to go home. Of couse they gave me some pethadine and scripts for more pain killers for when the anesthetic wore off. 

The whole point of Mohs is to avoid closing then reopening a wound weeks later. Of cause Mohs is not the only choise for dealing with DFSF.  But when it is an option,then even though it means waiting around with an open wound, while pathology is done, for me it was a wonderful option. It wasnt the cheapest option as I didnt have private health cover, but having it done by Dr Stanford was very important so we paid for the hospital expenses ourselves and I didnt have to wait to long.

As for radiation or cheomotherapy I was told they are not requires provided clear margins are acheived. DFSP only spreads to the lymph glands,blood or other organs, in a very few cases. These types of treatments are not considered at all in the early stages of DFSP.  As for an MRI, im sure if Dr Stanford feels you need one he will give you a referal to get one done. 

Boy there is so much I would like to say to you. But for now, please know you are not alone, if you want to send me an email (PM) any time. Every thing is going to be ok. You just need to go with your gut feelings. There is no use seeing Droctors no matter how good other people say they are. YOU need to comfortable and confident with the Doctor. 

Try not to worry, if you find someone closer before the 8th that would be great, but at least in the mean time you know there is someone expericenced at hand and you hqve n appointment. 

Kind regards 

Natalie.

 

Ontario48

sayanti said:

Thanks Nat

Hi Nat,

As I said, my journey has been one full of confusion. I am a migrant in Australia and do not have any family here. Its just me and my husband(poor chap) taking all decisions. So taking a decision and sticking to it gets very tough.

I have been told by multiple people not to travel to Sydney and get treated in Adelaide by a dermo surgeon here who is very well known. But you know what she suggested is not recommended treatment for DFSP by any standards.

I have taken an appointment with Dr Duncun at his Kiama clinic on the 8th of Sep. Will be travelling to Sydney on the 7th. I am hopeful that he would be able to help me.

I have been discouraged to visit him from even my extended family here who is herself a dermo. She mentioned that even Dr Duncun might not perform Mohs in one sitting due to problem of staining for DFSP which takes overnight. If I did not have your reference, I would have believed her and may have dropped the idea of the trip.

Doctors sometimes think they know everything about everything, and the moment you mention that you have read something on a forum, they get suspicious about it.

Another issue I have had is that my Path report was very inconclusive. My pathlogist did immunostains(think thats what you are talking about) and still said that it might be indicative of low grade fibrosarcoma arising in DFSP. 

I am scared to death for the past few weeks, have been a wreck and have driven my husband crazy. He are both 30 something professionals and have no experience in such matters. Our parents are in India and they are very scared as well.

I just hope that I can do Mohs on my DFSP and can get clean margins within 1 cm of the tumour(the tumour was around 1cm Diameter).And I hope it has not penetrated the bone. Its such a scary thought and I feel that I am in a nightmare. I don't know why all this happened to me at this age, that too when I am in a country where I have absolutely no support system.

Doctors here have been continuously discouraging us to go to Sydney or anywhere for treatment for this. They are absolutely confident that this can be treated in Adelaide. I refused to believe that as in a town of around 1.2 M people, I might be the only person who has ever had this.

I pray that Dr Duncun is not one of these money grabbing surgeons I have been meeting(met two of them already in Adelaide). All they are interested is to make me go into surgery, without giving me a comprehensive plan of whats the treatment after surgery. Do I need radiothgerapy? Do I need Chemotherapy? They don't know and they say they will try not to give me radiation.

I am a young girl, I fear that if I have radiation, I will lose a lot of hair on my scalp...and all they say is that its fixable by reconstruction now-a-days. Is that the way a person goes into surgery here, not knowing whats going to happen when they come out of it.

I think the docs here have been extremely narrow minded, refused to do any MRIs, any skin checks, nothing. Just push me into surgery the next available date on their calender. That too not because its urgent for me, but because its urgent for them. This is the worst kind of experience I have ever had.

I have a lot of hopes pinned on Dr Duncun, maybe it will be good to talk to someone who has actually seen a sarcoma before.

Regards

Sayanti

 

Hello Sayanti from Toronto Canada

Natalie told me of your situation and i have read your post.  i will write you shortly with some info that may help you. im working at the monent so will touch base later.

cheers for now...Joanne

ive many posts, you may want to read some in the meantime Ontario48

 

natmcg

Ontario48 said:

Hello Sayanti from Toronto Canada

Natalie told me of your situation and i have read your post.  i will write you shortly with some info that may help you. im working at the monent so will touch base later.

cheers for now...Joanne

ive many posts, you may want to read some in the meantime Ontario48

 

Two year check up

Hi everyone,

Just a quick few words to say I have been for my checkup. Scar was concerning me a bit, its been a little tender and one small part is a different colour. But Dr has given me the all clear. He says due to the amount of tissue, skin fat etc he removed and the tention applied to the area to pull it back together I will continue to get strange feelings there for quite while(nerves reconecting). So unless I have any major changes no need to see him again for 1-2 yrs.

For anyone  who has read Sayantis story, she is doing ok but at this point has chosen to contact me privatly as coming to this site is not as easy for her as it has been for myself and others.

Im sure she will return with an update before to long.

Bye for now

Nat.

monikakumari

dfsp patient

3 weeks ago i noticed lumps under my knees ...on back side of right thigh . Apprehensive about this unusual thing i went to see a doctor ang got skin biopsy done. two days back i recieved my report which says that its DFSP i am very tense ...m just 20 and feeling lyk m dead ...pls help me out...what are the things that exaggerate this tumor and foods to be avoided in such conditions  i would like to know?

natmcg

monikakumari said:

dfsp patient

3 weeks ago i noticed lumps under my knees ...on back side of right thigh . Apprehensive about this unusual thing i went to see a doctor ang got skin biopsy done. two days back i recieved my report which says that its DFSP i am very tense ...m just 20 and feeling lyk m dead ...pls help me out...what are the things that exaggerate this tumor and foods to be avoided in such conditions  i would like to know?

monikakumari

Hi,

I'm sorry you have been told you have dfsp. I'm hopeing that as you wrote this a few weeks ago that you have now got a treatment plan in place with your Doctor. 

I personally do not know of any that foods or activities that affect this type of cancer. My only advise would be that you seek treatment by a specialist who has experience with dfsp or at the very least a sarcoma specialist. As you haven't mentioned were you live its hard to know what resources you have available. But please know that in the right hands dfsp can be removed and your live will not change in any dramatic way. If you have any more questions I will my best to answer or help you find someone who can.

Good luck

Natalie.

daniel mattingly

wtf?

i jst found out i have this... what do i do

 

natmcg

daniel mattingly said:

wtf?

i jst found out i have this... what do i do

 

Yep thats what most of us say. wtf is dfsp

Hi Daniel,

You havnt given any info on how you found out or where your dfsp has pesented itself. I live in Australia, found out I had dfsp 2.5yrs ago. To cut a long story short, I ended up having Mohs surgery, all cancer removed, no further treatment. I had my 2yrs checkup with specialist a few mths ago...all good...

Hopefully by the time you read this you may have already got some answers to what is going to happen.

My only advise at this point is...dont google to much, you will just see all sorts of horrible stuff that scares the hell out of youand probably wont apply to you. FB has forums as well but once again some are helpful others just want to tell their problems to everyone but dont say anything constructive.

Hope you keep in touch. Id like to help even if its just to listen to your concerns.

Natalie.

Patti_T

Newly diagnosed

Hi everyone!  So glad to find this page!

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

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