DFSP Friends.
Comments
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Hello Worried...www987 said:Worried and confused
Hi everyone. I wish I'd known about the Mayo Clinic and Dr. Attia before we started treatment.
I tried to research DFSP specialists but his name never came up at the time.I'm the husband of a DFSP patient. She's had it on her upper arm and shoulder for at least a decade, which I guess is why none of her doctors seemed very concerned by it. It only started growing noticeably in the last couple of years, probably due to pregnancy. Anyway, after finally getting a biopsy done I took her recently to a world-renowned cancer hospital and have had somehwat of a mixed experience. The doctors we've seen don't sound especially knowledgeable about DFSP and we've been given some contradictory information. The doctors seemed more concerned with cosmetics than getting rid of the actual cancer (as someone above put it, they seem not to consider it a 'real cancer') and so the surgery was, I felt very conservative. This resulted (as I expected) in positive margins all the way around. While they're willing to go back and do it differently this time (cutting away tissue and assessing margins in real time until negative margins are achieved), they seem to prefer simply treating it with radiation and observing it without any further surgery. My wife also prefers this route because she's terrified of having to do a flap. It is of course, her decision and not mine, but I think she's entitled to know the risks of this approach. My feeling is that it's easier to prevent a recurrence now (through more definitive surgery plus radiation) then to have to deal with one later and also deal with the risk of metastasis, which becomes more likely the more you cut through the tumour. Although radiation has had encouraging results, the data set is very small and so I'm just nervous about relying solely on radiation when we know the margins are entirely positive.
Has anyone gone through a similar situation (i.e. relying only on radiation to deal with positive margins)? I feel like we're at a crossroads and I'm terrified of making the wrong decisison.
Yes hard decision to make and your wife is leading it with fear which doesn't always allows us to think clearly. Everything I have read is that RAD is used if they cannot produce clear margins with surgery. Best results in stats I have read say surgery is the best approach (total removal) of this cancer. They radiate if they are not able to do surgery due to inable to reconstruct or it would leave a major defect or if its too deep (or in the bones). Radiation is tricky as some do more harm. I would read as much as possible on that as you can and ask the doc about it. There are lots of articles if you dig online that speak to radiation and also patient stories.
The National Comprehensive Cancer Network has some good recent articles on DFSP. I have also been preaching see a STS (Soft Tissue Sarcoma) Specialist. Sarcoma is different from carcinomas. You want a doc with that expertise. Even the pathology findings are challenging to someone not versed in STS. Adult sarcomas represent 1% of all adult cancers and DFSP is even rarer within this group. I would also insist on an MRI as this cancer shows up on those. Alot of docs won't do them which, the more I read, I cannot believe wouldn't be standard practice to map where it is pre-surgery. The second procedure you describe is Moh's micro surgery. It's contraversal which approach is better, Moh's or WLE (wide local excision). The key as you know are clear margins. Another consideration is the measurement to clear margins. Some docs leave it too close which results in a higher rate of recurrence.
It's not a fast spreading cancer so maybe if you give it a bit of time your wife can get used to the idea of another surgery. Radiation produces side affects as well so I'd read up on that too. I didn't read too much on the subject as that was not a part of my treatment. Whatever you decide I wish the best for your wife and your family.
Cheers, Jo
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Hi - sorry for theOntario48 said:Hello Worried...
Yes hard decision to make and your wife is leading it with fear which doesn't always allows us to think clearly. Everything I have read is that RAD is used if they cannot produce clear margins with surgery. Best results in stats I have read say surgery is the best approach (total removal) of this cancer. They radiate if they are not able to do surgery due to inable to reconstruct or it would leave a major defect or if its too deep (or in the bones). Radiation is tricky as some do more harm. I would read as much as possible on that as you can and ask the doc about it. There are lots of articles if you dig online that speak to radiation and also patient stories.
The National Comprehensive Cancer Network has some good recent articles on DFSP. I have also been preaching see a STS (Soft Tissue Sarcoma) Specialist. Sarcoma is different from carcinomas. You want a doc with that expertise. Even the pathology findings are challenging to someone not versed in STS. Adult sarcomas represent 1% of all adult cancers and DFSP is even rarer within this group. I would also insist on an MRI as this cancer shows up on those. Alot of docs won't do them which, the more I read, I cannot believe wouldn't be standard practice to map where it is pre-surgery. The second procedure you describe is Moh's micro surgery. It's contraversal which approach is better, Moh's or WLE (wide local excision). The key as you know are clear margins. Another consideration is the measurement to clear margins. Some docs leave it too close which results in a higher rate of recurrence.
It's not a fast spreading cancer so maybe if you give it a bit of time your wife can get used to the idea of another surgery. Radiation produces side affects as well so I'd read up on that too. I didn't read too much on the subject as that was not a part of my treatment. Whatever you decide I wish the best for your wife and your family.
Cheers, Jo
Hi - sorry for the misundestanding - no I only had DFSP in the hip. When the surgeon called me with the pathology report i just misunderstood him and thought no DFSP was found in the flesh cut out of my hip and therefore I started to worry that maybe the biopsy had been switched with the lump I had removed at the same time in my neck/throad. But DFSP was found in the flesh removed from my hip but with clear margins. My lymph nodes in neck and cheek are back to normal size.
However I do not understand why my surgeon said that DFSP do not spread through lymph node when that is not the case.
Glad to hear you've had a great holiday in Cuba Jo and I hope Nat has a great crusie :-) - End of May and I'm of to Cypress for some sun and warmt.
www987: I've google DFSP and radiation and it seem that radiation is the course of treatment when surgery is not possible for what ever reason, but as Jo writes there are other side affects to radiation and surgery, if possible, is the recommended way to go. There is also a protein inhibitor called imatinib or Gleevec wish is used for treating DFSP - perhabs you should read up and that too before your next talk with the docs? I wish you and your wife the best and hope you can find the info to make the best decision for you both.
Best wishes
Lone
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Post op appointment
Just had a great post op appointment. She was thrilled at how good I was doing and thought the wound was healing great. She prefers to not take off the butterfly stitches, but have me get them wet now. Then they will fall off as they are ready to. She got great clear margins all around, and nothing new showed in all that they took out. My swelling has gone down a lot. I will always have an indentation on my leg from this 7" long gash, but that's OK.
I told her about this forum and she is thrilled it is here for us. She was amazed that a doctor would say this isn't a real cancer! She stressed again how there is a very high reoccurance rate, but to have regular dermatologist appointments should keep on top of it all. I am still quite sore, but of course healing hurts! It has only been a week and a day.
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Cheers Carolecaroleinnkeeper said:Post op appointment
Just had a great post op appointment. She was thrilled at how good I was doing and thought the wound was healing great. She prefers to not take off the butterfly stitches, but have me get them wet now. Then they will fall off as they are ready to. She got great clear margins all around, and nothing new showed in all that they took out. My swelling has gone down a lot. I will always have an indentation on my leg from this 7" long gash, but that's OK.
I told her about this forum and she is thrilled it is here for us. She was amazed that a doctor would say this isn't a real cancer! She stressed again how there is a very high reoccurance rate, but to have regular dermatologist appointments should keep on top of it all. I am still quite sore, but of course healing hurts! It has only been a week and a day.
Hi Carole, good to hear all is well. The surgery seems to be the worst part of this cancer. We all have dents so don't feel bad LOL!! Better to have a divot then a cancer right!? You could make up a adventorous story like you got attached by a shark and you fought him off, or a school of paraonas nipped you and you ate them all for dinner.
You know your body and when it changes you will take steps to figure it out. You have a team now so whenever you see a change they will support you.
All the best...Jo
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Thanks Jo!
I like the shark story, and I do live in Florida...lol! More than 1/2 the butterfly stitches are off now, so things should start stretching and rearranging so it won't look so bad. It is high up on my thigh anyway! TX again!
This is certainly quite a journey that none of us imagined going on.0 -
Thank you both for your kindLone111 said:Hi - sorry for the
Hi - sorry for the misundestanding - no I only had DFSP in the hip. When the surgeon called me with the pathology report i just misunderstood him and thought no DFSP was found in the flesh cut out of my hip and therefore I started to worry that maybe the biopsy had been switched with the lump I had removed at the same time in my neck/throad. But DFSP was found in the flesh removed from my hip but with clear margins. My lymph nodes in neck and cheek are back to normal size.
However I do not understand why my surgeon said that DFSP do not spread through lymph node when that is not the case.
Glad to hear you've had a great holiday in Cuba Jo and I hope Nat has a great crusie :-) - End of May and I'm of to Cypress for some sun and warmt.
www987: I've google DFSP and radiation and it seem that radiation is the course of treatment when surgery is not possible for what ever reason, but as Jo writes there are other side affects to radiation and surgery, if possible, is the recommended way to go. There is also a protein inhibitor called imatinib or Gleevec wish is used for treating DFSP - perhabs you should read up and that too before your next talk with the docs? I wish you and your wife the best and hope you can find the info to make the best decision for you both.
Best wishes
Lone
Thank you both for your kind replies.
She is actually being treated at a very famous sarcoma center in the US, which is why I was puzzled by their reluctance to do even a wide excision. The second surgery (if it happens) would not be Mohs, although I agree that it sounds awfully similar. The surgeon has very strong feelings against Mohs. When I asked him about it in the first appointment he said it was "stupid" because "you're cutting through the tumour", but isn't that what he's done now already?
I could tell that the surgeon was surprised after the surgery by the extent of the infiltration. He went deep into the muscle and still got positive margins. Also the top of her surgical scar is only a few centimeters away from her clavicle and so there isn't a lot of tissue to work with there. Perhaps that's why the doctors think they should radiate first before doing another surgery. I'm now concerned that it's infiltrated the bone. What happens when DFSP gets into the bone? I haven't been able to find any info online about that.
Is a skin graft/flap always necessary for a wide excision on her upper arm/shoulder? She says she can live with a divot or depression there as long as they can close up the wound. I also think that it would be easier to detect a recurrence that way.
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Hi www987 - i don't knowwww987 said:Thank you both for your kind
Thank you both for your kind replies.
She is actually being treated at a very famous sarcoma center in the US, which is why I was puzzled by their reluctance to do even a wide excision. The second surgery (if it happens) would not be Mohs, although I agree that it sounds awfully similar. The surgeon has very strong feelings against Mohs. When I asked him about it in the first appointment he said it was "stupid" because "you're cutting through the tumour", but isn't that what he's done now already?
I could tell that the surgeon was surprised after the surgery by the extent of the infiltration. He went deep into the muscle and still got positive margins. Also the top of her surgical scar is only a few centimeters away from her clavicle and so there isn't a lot of tissue to work with there. Perhaps that's why the doctors think they should radiate first before doing another surgery. I'm now concerned that it's infiltrated the bone. What happens when DFSP gets into the bone? I haven't been able to find any info online about that.
Is a skin graft/flap always necessary for a wide excision on her upper arm/shoulder? She says she can live with a divot or depression there as long as they can close up the wound. I also think that it would be easier to detect a recurrence that way.
Hi www987 - i don't know anything about what happens when/if dfsp grows into the bones. Perhabs Jo has read anything?
And no a wide exsision does not always include a skin graft if they can possibly pull the skin together I'm sure the doctors would prefer that - but is an area with not a lot of extra skin and therefore they might have to use skin graft is they have to remove more of the top skin
best wishes
lone
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Hi laura - Jo who is alsoLauraamc said:dfsp in toronto
Hi there, any recommendations for a good doctor in toronto to treat dfsp? my husband is newly diagnosed and having trouble finding good care. Thanks for any help you can provide!
Hi laura - Jo who is also helpfull in here has been treated in Toronto- I'm sure she will check in soon to give recommandations.
great to hear Carole. I'm so glad you are recovering quickly when being self imployed it isn't easy to be unable to work.
/lone
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Great Doc in Toronto!!Lone111 said:Hi laura - Jo who is also
Hi laura - Jo who is also helpfull in here has been treated in Toronto- I'm sure she will check in soon to give recommandations.
great to hear Carole. I'm so glad you are recovering quickly when being self imployed it isn't easy to be unable to work.
/lone
Hello Lone,
Laura reached out yesterday via email to get some info on Dr. Gladdy. I saw Gladdy today and am very pleased with her. She is a great lady, easy to talk to and referred to the Mount Sinai Sacroma Unit in Toronto as the "mecca" for sarcoma. Wow!! She has lots of experience with DFSP, usually with recurrence or second surgeries. She agreed that a sarcoma doc is the way to go as they are so versed in this type of cancer. She reviewed my pathology and is happy with outcomes to date. She is sending me for an MRI to ensure all of its gone and then after that if all is clear she will manage me with yearly physicals. I feel I am in good hands.
Hope all is well with you!!
Jo
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That term again "rare"www987 said:Thank you both for your kind
Thank you both for your kind replies.
She is actually being treated at a very famous sarcoma center in the US, which is why I was puzzled by their reluctance to do even a wide excision. The second surgery (if it happens) would not be Mohs, although I agree that it sounds awfully similar. The surgeon has very strong feelings against Mohs. When I asked him about it in the first appointment he said it was "stupid" because "you're cutting through the tumour", but isn't that what he's done now already?
I could tell that the surgeon was surprised after the surgery by the extent of the infiltration. He went deep into the muscle and still got positive margins. Also the top of her surgical scar is only a few centimeters away from her clavicle and so there isn't a lot of tissue to work with there. Perhaps that's why the doctors think they should radiate first before doing another surgery. I'm now concerned that it's infiltrated the bone. What happens when DFSP gets into the bone? I haven't been able to find any info online about that.
Is a skin graft/flap always necessary for a wide excision on her upper arm/shoulder? She says she can live with a divot or depression there as long as they can close up the wound. I also think that it would be easier to detect a recurrence that way.
Hey there, I haven't read a lot about spread to the bone for DFSP. Again the literature says "extremely rare". I know there is a type of sarcoma that goes to the bone. You may want to read up on that as well as it's in the same family.
Have they ever done a MRI, this will show up on them and will indicate where it is.
Below link for article DFSP spread to the bone.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792083/
Try the National Comprehensive Cancer Network as well and search there NCCN.
Good Luck!!
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That term again "rare"www987 said:Thank you both for your kind
Thank you both for your kind replies.
She is actually being treated at a very famous sarcoma center in the US, which is why I was puzzled by their reluctance to do even a wide excision. The second surgery (if it happens) would not be Mohs, although I agree that it sounds awfully similar. The surgeon has very strong feelings against Mohs. When I asked him about it in the first appointment he said it was "stupid" because "you're cutting through the tumour", but isn't that what he's done now already?
I could tell that the surgeon was surprised after the surgery by the extent of the infiltration. He went deep into the muscle and still got positive margins. Also the top of her surgical scar is only a few centimeters away from her clavicle and so there isn't a lot of tissue to work with there. Perhaps that's why the doctors think they should radiate first before doing another surgery. I'm now concerned that it's infiltrated the bone. What happens when DFSP gets into the bone? I haven't been able to find any info online about that.
Is a skin graft/flap always necessary for a wide excision on her upper arm/shoulder? She says she can live with a divot or depression there as long as they can close up the wound. I also think that it would be easier to detect a recurrence that way.
Hey there, I haven't read a lot about spread to the bone for DFSP. Again the literature says "extremely rare". I know there is a type of sarcoma that goes to the bone. You may want to read up on that as well as it's in the same family.
Have they ever done a MRI, this will show up on them and will indicate where it is.
Below link for article DFSP spread to the bone.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792083/
Try the National Comprehensive Cancer Network as well and search there NCCN.
Good Luck!!
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HI EVERY ONE :-)Ontario48 said:Great Doc in Toronto!!
Hello Lone,
Laura reached out yesterday via email to get some info on Dr. Gladdy. I saw Gladdy today and am very pleased with her. She is a great lady, easy to talk to and referred to the Mount Sinai Sacroma Unit in Toronto as the "mecca" for sarcoma. Wow!! She has lots of experience with DFSP, usually with recurrence or second surgeries. She agreed that a sarcoma doc is the way to go as they are so versed in this type of cancer. She reviewed my pathology and is happy with outcomes to date. She is sending me for an MRI to ensure all of its gone and then after that if all is clear she will manage me with yearly physicals. I feel I am in good hands.
Hope all is well with you!!
Jo
Wow, what a holiday,! 3 wks off from cooking and cleaning.:-) :-) Im not one for lying in the sun but the deck chairs in a quiet corner of the ship were great for relaxing with a drink and a book. Your turn next Lone, are you taking the kids? My son has been to Cypris, said it was great,lovely people always happy. Carole sounds like your truly on your way to a full recovery. My husband is planing a trip for us to the USA later this year. Watch out I might come a knock'n. Lol. Did some one ask about dfsp spreading to bones.? Well yes it does. I read a post by a young lady when i first joined csn. It was an old post and from memory it wasnt under a dfsp thread. I was poking around reading stuff all over the place( as you do when first told you have a very rare skin cancer). Anyways her dfsp was on her chest and had past through all the soft tissue layers,muscle and into a rib. The rib was remover and I suppose that gave her the all clear. Iv read so many stories from dfsp survivors over the last 7mths its hard to remember the details. But i also remember reading that if a bone that is really needed has to be removed Dr.s can take bones from other areas of our body and use them to keep things structually sound. So Joanne, whats going on in Canada. Are you getting discount for evey new customer you refer to Dr.Gladdy lol.....;-) Seriously its great you did some digging and found her and now not only you but others can benefit from her experience with dfsp. Talk again soon Nat.btw Jo my dermstoligist/surgon said all his dfsp patients have been refered for second surgery (mohs) and recurence and thats why he is continuing to try and make other dermos and GPs more aware of dfsp. He is strongly commited to educating them on early detection of dfsp.
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Facebook group
Hello everyone
There is a facebook group dedicated to people with DFSP
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face bookAnthonyBrose7 said:Facebook group
Hello everyone
There is a facebook group dedicated to people with DFSP
Hi again Anthony,
Thanks for the tip about facebook I think most of us here realised the would be people with dsfp reaching out for support and info on facebook. I have acctualy heard there are a couple of dfsp groups their.
So why havent we checked them out.? Well I can only speak for myself, ..... Iv never been very interested in the internet and am relatively new to this stuff, my husband and three sons seem to have their heads constantly facing a screen of some sort( ph. Laptop etc) and that kind of put me off. If I hadnt found out I had a very rare cancer i probably wouldnt have even found this csn.
Wanting to do some reseasrch on dfsp is what lead me to this site.
So Im happy with the contacts I have made here and although I am a little curious about the facebook groups at this point I dont feel its the type of forum for me ...(muchto the disapointment of some of my extended family who keep telling me to get with the times) But hey Im on skype so what more do the want,,!!! Lol.
Regards and thanks
Natalie.0 -
AnthonyBrose7 said:
Facebook group
Hello everyone
There is a facebook group dedicated to people with DFSP
Anthony, thanks so much for the FB link! I am very active on there with my business, and also a bit personal stuff so immediately joined the group. It is very interesting and seeing some of the photos is unreal! All on there seem very committed to being supportive for all of us with this rare cancer...thanks again! Knowledge is power...
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Joined a while backAnthonyBrose7 said:Facebook group
Hello everyone
There is a facebook group dedicated to people with DFSP
Thanks Anthony for the link. I joined up a while back but found the whole FB thing overwhelming. I am tech savy but like Nat feels it can consume a lot of your time and energy. Now saying that its great that people have this forum for this type of cancer. I will try and look you up there and say hello.
Jo
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Asking for a percentage!natmcg said:HI EVERY ONE :-)
Wow, what a holiday,! 3 wks off from cooking and cleaning.:-) :-) Im not one for lying in the sun but the deck chairs in a quiet corner of the ship were great for relaxing with a drink and a book. Your turn next Lone, are you taking the kids? My son has been to Cypris, said it was great,lovely people always happy. Carole sounds like your truly on your way to a full recovery. My husband is planing a trip for us to the USA later this year. Watch out I might come a knock'n. Lol. Did some one ask about dfsp spreading to bones.? Well yes it does. I read a post by a young lady when i first joined csn. It was an old post and from memory it wasnt under a dfsp thread. I was poking around reading stuff all over the place( as you do when first told you have a very rare skin cancer). Anyways her dfsp was on her chest and had past through all the soft tissue layers,muscle and into a rib. The rib was remover and I suppose that gave her the all clear. Iv read so many stories from dfsp survivors over the last 7mths its hard to remember the details. But i also remember reading that if a bone that is really needed has to be removed Dr.s can take bones from other areas of our body and use them to keep things structually sound. So Joanne, whats going on in Canada. Are you getting discount for evey new customer you refer to Dr.Gladdy lol.....;-) Seriously its great you did some digging and found her and now not only you but others can benefit from her experience with dfsp. Talk again soon Nat.btw Jo my dermstoligist/surgon said all his dfsp patients have been refered for second surgery (mohs) and recurence and thats why he is continuing to try and make other dermos and GPs more aware of dfsp. He is strongly commited to educating them on early detection of dfsp.
LOL, hey Nat...glad you had a great time on holidays, well deserved!!!
I see Dr. G (as we all call her now ; ) on June 11th for the results of my MRI (which I actually don't have a date for yet but they did leave a message today) and I was going to say "cut me a percentage" on the DFSP patients. I was saying to Laura, I am sure she is wondering why she is getting a flood of them. I just find it so bizzard (happily) that there are a few of us who connected on here from the Toronto area. Jonny, her husband, goes in for surgery with Dr G this Friday. We wish him the best and know he will be well taken care of.
Jo
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Had a look at FBOntario48 said:Joined a while back
Thanks Anthony for the link. I joined up a while back but found the whole FB thing overwhelming. I am tech savy but like Nat feels it can consume a lot of your time and energy. Now saying that its great that people have this forum for this type of cancer. I will try and look you up there and say hello.
Jo
Hi everyone, Curiosity got the better of me and I somehow managed to log in and have a look at the link tony provided above. Wow Tony thst is quite s big wound you have but it seems to be healing well. After looking at some of the pictures I reslize even more that what we see on the outside of our skins surface is not at all an indicator of what is lerking below. My pink/red raised mark was no where near as big as some of the before op pictures on FB but the dfsp had gone deep and wide under that spot. Thanks Tony for sharing your story and photos(on fb). They seem like a supportive crowd and the information is very interesting. Not sure if i will post anything there (havent worked that part out yet) Im feeling like Im at the other end of my dfsp but will always want to support any newbees to this one in a million club. Natalie.
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Nat did you post!natmcg said:Had a look at FB
Hi everyone, Curiosity got the better of me and I somehow managed to log in and have a look at the link tony provided above. Wow Tony thst is quite s big wound you have but it seems to be healing well. After looking at some of the pictures I reslize even more that what we see on the outside of our skins surface is not at all an indicator of what is lerking below. My pink/red raised mark was no where near as big as some of the before op pictures on FB but the dfsp had gone deep and wide under that spot. Thanks Tony for sharing your story and photos(on fb). They seem like a supportive crowd and the information is very interesting. Not sure if i will post anything there (havent worked that part out yet) Im feeling like Im at the other end of my dfsp but will always want to support any newbees to this one in a million club. Natalie.
Hey Nat, I set up FB to monitor the boy but find I get all sorts of stuff in email that I am not interested in. Would be better if there were more controls (or maybe I don't know how to use them) I said hello to Anthony there and he replied...great connecting with you Anthony. His surgeon really did a great job!!
Anyway Nat, I have my MRI booked for Friday, follow up appointment is booked for June 11th. This is the last dot, the last T crossed and then I am into DFSP maintenance mode. Looking forward to that. The weather is crazy here, hot with t-storms and tornados. We even felt a tremor from a mild earthquake in Ottawa (that's where Tony lives). Going to get a bit cold this weekend and then back to summer temps.
Looking to golf!
Jo
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