DFSP Friends.
Comments
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Good Luck JoOntario48 said:Nat did you post!
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
Hi Jo,, no I didnt post on FB managed to get in there and read a bit, even added a "like" for those lovely girls whoes dad is in the military. And then I got all mixed up with what I was doing so got out of it. I could ask one of my boys to help me out(or hubby) but I dont realy feel the need to grt involved on FB at this point.
So MRI in 2days, then results, and another chapter of your dfsp is over. Then...like you said its into maitinance and monitoring.
I just realized the other morning when i was getting dressed that I havent noticed any of the little pains(small sharp stabs or uncomfortable feeling ) for some time under my scar. So maybe all my soft tissues and nerves have reconected and repared.
I was thinking the other day that even though my Dr. said at my check up that I dont need MRI or x ray. Maybe when I go for my regular brain tumor checkup(MRI every 1-2yrs) I could arrange to have my dfsp site done as well,. Not sure if they would do it but I'll ask ,cause hey Im gunna be lying there in the tunnel anyway so why not stay and listen to all those wonderful noises for a bit longer.lol
Its raining here and probably will keep raining for the next few days. We are well into our winter weather but its mild compeared to what you go through .
Kind regards to all
Nat.0 -
Thanks, natmcg. I wonder hownatmcg 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.
Thanks, natmcg. I wonder how they figured out that it was in her rib. My wife's doctor says he doesn't think it's inflitrated the bone, but if we want to be honest about it, he has no way of knowing this.
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Absolutely can infiltrate the bone....www987 said:Thanks, natmcg. I wonder how
Thanks, natmcg. I wonder how they figured out that it was in her rib. My wife's doctor says he doesn't think it's inflitrated the bone, but if we want to be honest about it, he has no way of knowing this.
I have read much on the spread. If it does decide to travel it goes via lymph nodes or blood vessels, hence can park in the bones. PDGF, Platelet Drivin Growth Factor. Soft tissue sarcoma is connective tissue, bones, fat and muscle. All cancer mutations have a growth factor (this contributes to the determination of metastasis-agressiveness).
Do remember though that DFSP is considered low grade metastic - 4-6% of yearly cases spread. Our numbers our small from the get go (1% of all adult cancers)...this is within that group. Carcinomas are more the "norm" for cancers (and where the $$ is). Do be diligent in getting all testing completed. I started with General Surgeon (who was excellent as I had a diagnosis immediately...thank the big guy!) and a Skin Cancer specialist but have now connected with a Soft Tissue Sarcoma specialist. It is the way to go. Sarcoma is different from all cancers. It's rare in itself.
Anyhow...if you ever have one of those ...hmmm, I'm just not feeling comfortable with that...ask questions, get second opinions.
Cheers
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dfsp in bonewww987 said:Thanks, natmcg. I wonder how
Thanks, natmcg. I wonder how they figured out that it was in her rib. My wife's doctor says he doesn't think it's inflitrated the bone, but if we want to be honest about it, he has no way of knowing this.
Hi www987,
Now Im no Dr. So Im only going by what I have heard and read(and Iv done so much reading in the last 10mth I may be confusing facts from hearsay). Anyway my "guess" is that if dfsp has found its way through all soft tissue to wear it conects with bone then they would have to test the bone for cancer as well. Due to another heath issue of mine 3 yrs ago(brain tumor) I went for mulitple test....one being bone scan. They injected a dye waited for about two hrs...to allow the dye to spread though bone tissue then did scan (whole body)Thankfully the only abnormality in my bones was arthritis. Btw my tumor turned out to be benign and doesnt give me any problems.
Best wishes to your wife and you.
Nat
PS. I just read Joannes post and boy doesnt she do a great job when it comes to finding the info, she really has been a great help to all of us here both with info and support. I have to admit i have turned to her as the " go to" person on more than 1 occasion since we made contact(and became friends)on this board.
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Thanks, both.
She is beingThanks, both.
She is being treated by surgical oncologist at a top US sarcoma center, but when your doctor says "this tumour never ever metastsizes" even though a simple google search will show that that is absolutely false, that really does not inspire a lot of confidence. I guess that if he goes all the way down the bone and still gets positive margins then that will mean that it has reached the bone. I just wonder what the treatment would be in that case (amputation?!?).
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Sounds like...www987 said:Thanks, both.
She is beingThanks, both.
She is being treated by surgical oncologist at a top US sarcoma center, but when your doctor says "this tumour never ever metastsizes" even though a simple google search will show that that is absolutely false, that really does not inspire a lot of confidence. I guess that if he goes all the way down the bone and still gets positive margins then that will mean that it has reached the bone. I just wonder what the treatment would be in that case (amputation?!?).
Sounds like you need to see another specialist for a second opinion. That statement is absolutely untrue!! I've read many articles on different mets to lungs, bone, brain/CNS, pancreous, liver, testicles even the uvala (dangly at the back of your throat). I would expect that if there are still positive margins down to the bone he would do an MRI. This will show if its in the bone.
Lots of what I have read as well indicates with mets there is tumor "progression" whether it be changing to another variant, FS-DFSP, or the cells have started to proliferate faster, myxoid changes. I have also read that if the tumor is cut this could increase the rate of proliferation (not sure how many surgeries your wife has had, I havent seen all your posts). The cases I have read where it's in the bone they do radiation therapy but in some cases they end up removing the affected bone (if possible). Where is hers located?
Jo
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It's on her upper arm and
It's on her upper arm and shoulder and she's had it for a very long time (at least 10 years). I think she was unlucky in that the overlying skin looked completely normal and so none of her doctors took it seriously. She's had two surgeries so far: the first was a "biopsy" she did back home (in reality he took out much more than necessary for a biopsy, which made me really mad). The second surgery was done a few months later at this sarcoma center in the US where the gross tumour was taken out but the margins came out positive. I still don't understand the point of this second surgery but the recommendation after that was to do radiation followed by a wide excision. The surgeon has promised not to close the wound until negative margins are achieved but I wish he'd tried to do that from the beginning!
I'm kind of hesitant to seek a second opinion at this stage. The fact that it has the potential to metastasize doesn't really change anything in how it is treated, right? If we do go for a second opinion, what would be the best way to go about it without alienating her current doctor?
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We're always afraid to offend...www987 said:It's on her upper arm and
It's on her upper arm and shoulder and she's had it for a very long time (at least 10 years). I think she was unlucky in that the overlying skin looked completely normal and so none of her doctors took it seriously. She's had two surgeries so far: the first was a "biopsy" she did back home (in reality he took out much more than necessary for a biopsy, which made me really mad). The second surgery was done a few months later at this sarcoma center in the US where the gross tumour was taken out but the margins came out positive. I still don't understand the point of this second surgery but the recommendation after that was to do radiation followed by a wide excision. The surgeon has promised not to close the wound until negative margins are achieved but I wish he'd tried to do that from the beginning!
I'm kind of hesitant to seek a second opinion at this stage. The fact that it has the potential to metastasize doesn't really change anything in how it is treated, right? If we do go for a second opinion, what would be the best way to go about it without alienating her current doctor?
I always go by my guts. If it doesn't feel right then you need to do something. Good mechanic, bad mechanic. They both get the job done but you visit the bad machanic more frequently. Alot of people get second opinions when they have cancer. You don't want to look back on the experience and say hey, I wish I had...
It sounds like it may be in a tricky place or it's too big for total excision. Everything I've read with radiation prior to surgery is to shrink it to something more managable. The key is acceptable clear margins. My original surgeon who biopsied said "removal is the cure, it's challenging if they cannot get clear margins". This will contribute to recurrence. Most get more aggressive as they recur, hence why they say it has more metastic potiential.
My General Surgeon referred me to a Moh's centre. This was at the best skin cancer centre in Canada. They did the surgery and I really wasn't impressed with the work up (or lack of) and they seemed quite flippent about the whole thing so I searched and found a sarcoma specialist. I explained my situation and she is now my gal...my comfort level completely changed.
If your doc alienates her for being dudiligent then he isn't doc you want. My two cents.
Good Luck!!
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Serious choices.www987 said:It's on her upper arm and
It's on her upper arm and shoulder and she's had it for a very long time (at least 10 years). I think she was unlucky in that the overlying skin looked completely normal and so none of her doctors took it seriously. She's had two surgeries so far: the first was a "biopsy" she did back home (in reality he took out much more than necessary for a biopsy, which made me really mad). The second surgery was done a few months later at this sarcoma center in the US where the gross tumour was taken out but the margins came out positive. I still don't understand the point of this second surgery but the recommendation after that was to do radiation followed by a wide excision. The surgeon has promised not to close the wound until negative margins are achieved but I wish he'd tried to do that from the beginning!
I'm kind of hesitant to seek a second opinion at this stage. The fact that it has the potential to metastasize doesn't really change anything in how it is treated, right? If we do go for a second opinion, what would be the best way to go about it without alienating her current doctor?
Hello again,www987, Have to say.... I agree with Jo. Whats more important your wifes best outcome or upsetting the Dr.?. You dont sound like you have full confidence in whoever is treating her now so why are you hesitating. Do some research...Go find a specialist who has experience with DFSP. Ring a few if you have to and see who is willing to look at her reports and consult with her / you. If your current Dr.gets upset ..then he/she is probably not the type of person you will need want dealing with this situation. You need to find someone you are totaly comfortable with,someone who will answer all your questions and in a way you can understand. My first Dr.who did my biopsy and first excision (didnt get clear margins)recomended my mohs surgon/sarcoma specialist and I have total confidence in both of them. It was my choice to have the first excision,hoping that would be enough,but ended up having mohs anyway. As your wife's dfsp is not a recurance I'm wondering why radiation is being talked about. Did an MRI confirm the size of the affected ? You mentioned the area being not right for 10yrs. Thank goodness this is a very slow growing cancer. I noticed the first changes in my dfsp area well over ten years ago( first sign for me was small indent and discoloration on skin) then when a pink spot/ lump stared to grow I brought it to the attention of many different a Dr. untill finaly I got sick of what was suppose to be a harmless fatty growth (misdiagnosis is very,very commom with this rare cancer it so often looks like a number of other skin conditions )and insisted I wanted it gone, The rest is history. I'm at the other end of my ordeal. And in time your wife will be though this rough patch and on the mend.
Good luck Natalie.
PS If you were in Australia Id recomend my Dr. with out any hesitation.
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Hi! thereOntario48 said:Hello Lone...All will be fine!
Nat is completely right. Even though this is a very rare cancer, and yes a lot of doctors haven't dealt with it, it is very treatable and cureable. Sounds like your treatment is moving along just fine. It's the waiting around that I found most difficult. And then when you are past it you will be thinking, what the heck was that all about!
This type of tumor can be un-noticed for years and misdiagnosed many times. My first surgeon even said, its not cancer it's just a lump of fat. Well hey, this IS a soft tissue sarcoma...which is in the FAT. Mine started pretty much the same as Nat's (ours are actually identical). I noticed mine about 4 years ago starting with a skin plague, small smudge of darker skin. And to answer your question, not all have the protuberans (stalky growths from the skin). This cancer starts in the deeper layers and can grow up and out. It also has projections...roots. That's why the type of surgery. They need to remove surrounding tissue to encompass all the roots. So once you get what they call clear margins, you are good!! Being on your hip provides a lot of area for your doctors to work which means easier recovery for you and better chance of getting it all. I had Wide Local Excision like you will be having. I was awake, I'd ask to be put to sleep if I had to do it over again. There really is not need to be awake. Nat had Moh's. Lots of debate online on that one. It' what you doctor feels is best for you and your situation. My second surgeon was Moh's certified and I when to a Mohs clinic in Toronto and had WLE...go figure. But he got it all in one shot and did a great job on the incision.
Being told you have cancer is scary. Be assured that if you have to have a cancer, this isn't one of the BAD ones. Some have these tumors for 10-15 years with no lasting affects after they are removed. Its a slow growing cancer and it's extremely rare for it to spread anywhere else. I've done alot of reading on this. The best and up-to-date articles I found online where at National Comprehensive Cancer Network. They really summarize what a thousand other articles are saying and its current, straight forward and easy to understand. Alot of what you will find online is from years ago. As Nat mentioned, you can find the horror stories but if you think about it, its the procedures that are they talk about and its usually due to infection or something...everyone survived and are cancer free. Keep to readings by the professionals to get the straight facts.
You will be fine and Nat and I are here if you need to chat or have any questions.
Cheers for now, Joanne
Hi Joanne,
I just learned yesterday that Ihave DFSP. I had a cyst looking thing on my lover back for 2 years, I actually had a birth defect there when I was born but no pain nothing than all of a sudden at age 37 that cyct looking thing poped out, it was perfectly round on a stalk it did grow very little in size in the past 2 yrs than last month when I was in the massage chair I got up all of a sudden and that lump stuck to a one of those round turning balls and ripped on the edges of the lump. So went to emergency cause bleeding badly they just put a protecting patch and told me to go to dermatology in the morning. At dermatology they schedule me for a removal of the lump within the next 2 days, result came yesterday that I have DFSP by the way hospital I went was Toronrto Western. Dr. told me nothing to be scared of but at the end it's the big "C" is always scarry he said, he will referred me to Princess Margeret.
It's been only a day, so far I had no call for appointment. My question is do you have any idea when they might respond and how long the procedure will take how fast was yours and do they do MOHS method in PM hospital...
Thank you in advance
Cheers!
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Good Response Time in TOTolga33 said:Hi! there
Hi Joanne,
I just learned yesterday that Ihave DFSP. I had a cyst looking thing on my lover back for 2 years, I actually had a birth defect there when I was born but no pain nothing than all of a sudden at age 37 that cyct looking thing poped out, it was perfectly round on a stalk it did grow very little in size in the past 2 yrs than last month when I was in the massage chair I got up all of a sudden and that lump stuck to a one of those round turning balls and ripped on the edges of the lump. So went to emergency cause bleeding badly they just put a protecting patch and told me to go to dermatology in the morning. At dermatology they schedule me for a removal of the lump within the next 2 days, result came yesterday that I have DFSP by the way hospital I went was Toronrto Western. Dr. told me nothing to be scared of but at the end it's the big "C" is always scarry he said, he will referred me to Princess Margeret.
It's been only a day, so far I had no call for appointment. My question is do you have any idea when they might respond and how long the procedure will take how fast was yours and do they do MOHS method in PM hospital...
Thank you in advance
Cheers!
Hello Tolga33,
Found your posts. Sounds like a typical display of DFSP. Many have some sort of scar, patch, bump, lump etc for a long time before they need to react to it. For me, I had a spot or rather a smudge under my breast. It just appeared one day. Nothing of any worry. I have more of an olive complextion and plus I was approaching 50 and you get stuff...LOL. It became a bit firm and leathery (this is the plaque stage) so I asked my GP what it was and she said it nothing, don't worry about it. It stayed like that for about 3 1/2 years and then suddenly it started to sprout, this is the protruberans stage. It grew rapidly over two months to the point where it was uncomfortable to wear a bra.
My general surgeon removed it and he even said it's nothing...it's not cancer it's just a fat deposit. That was November 1 2012. Nov 12th pathology said DFSP and then on the 29th I went to Women's Colloge Moh's clinic to have the second surgery. I thought I was getting Moh's but he did wide local excision. No reason was given but have read if there is room to move WLE is best...Mohs better for tricky spots like face,neck, head. I called WC a chop shop, in and out, bing bang and its over.
That's when I reached out to Dr. Gladdy. She is a sarcoma oncologist and genetic (translocation) researcher. It's the way to go. Princess Margaret has a good sarcoma unit (Dr. G's clinic is there) but Mount Sinia is the MECCA for sarcoma...better equipment etc. (had MRI there) Check them out and yes you can decide who you want to see. Dr. G is a great lady, easy to talk to.
Keep me posted, do lots of reading. Stick to medical reports/data. National Comprehensive Cancer Network www.NCCN.org has lots of info and is used as a standard of treatment. Everyone is different, your case is unique. Write your questions and take to your appointment and make sure you get all the answers you need.
Cheers, Joanne
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Hi tolga33Ontario48 said:Good Response Time in TO
Hello Tolga33,
Found your posts. Sounds like a typical display of DFSP. Many have some sort of scar, patch, bump, lump etc for a long time before they need to react to it. For me, I had a spot or rather a smudge under my breast. It just appeared one day. Nothing of any worry. I have more of an olive complextion and plus I was approaching 50 and you get stuff...LOL. It became a bit firm and leathery (this is the plaque stage) so I asked my GP what it was and she said it nothing, don't worry about it. It stayed like that for about 3 1/2 years and then suddenly it started to sprout, this is the protruberans stage. It grew rapidly over two months to the point where it was uncomfortable to wear a bra.
My general surgeon removed it and he even said it's nothing...it's not cancer it's just a fat deposit. That was November 1 2012. Nov 12th pathology said DFSP and then on the 29th I went to Women's Colloge Moh's clinic to have the second surgery. I thought I was getting Moh's but he did wide local excision. No reason was given but have read if there is room to move WLE is best...Mohs better for tricky spots like face,neck, head. I called WC a chop shop, in and out, bing bang and its over.
That's when I reached out to Dr. Gladdy. She is a sarcoma oncologist and genetic (translocation) researcher. It's the way to go. Princess Margaret has a good sarcoma unit (Dr. G's clinic is there) but Mount Sinia is the MECCA for sarcoma...better equipment etc. (had MRI there) Check them out and yes you can decide who you want to see. Dr. G is a great lady, easy to talk to.
Keep me posted, do lots of reading. Stick to medical reports/data. National Comprehensive Cancer Network www.NCCN.org has lots of info and is used as a standard of treatment. Everyone is different, your case is unique. Write your questions and take to your appointment and make sure you get all the answers you need.
Cheers, Joanne
Just wanted to let you know its very normal to be a bit scared when you are told you have a type of cancer.
My DSFP story is very similar to Jo's. Even the location is the same, also years of being told I had nothing to worry about.Hah!!I
Jo has given you some great info and I know from past conversations that she has great convidence in the places she mentioned. I on the other hand can only offer moral support as I live in Australia. So welcome to the 1 in a million club.
the club you didnt even know existed. Btw, I had mohs (after biopsy and small excision that didnt get clear margins). 2 yrs on and I have a well healed scar and no cancer. Life is good. And yours will be too. Just takes time.Good luck,Natalie.
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Sorry Nat!natmcg said:Hi tolga33
Just wanted to let you know its very normal to be a bit scared when you are told you have a type of cancer.
My DSFP story is very similar to Jo's. Even the location is the same, also years of being told I had nothing to worry about.Hah!!I
Jo has given you some great info and I know from past conversations that she has great convidence in the places she mentioned. I on the other hand can only offer moral support as I live in Australia. So welcome to the 1 in a million club.
the club you didnt even know existed. Btw, I had mohs (after biopsy and small excision that didnt get clear margins). 2 yrs on and I have a well healed scar and no cancer. Life is good. And yours will be too. Just takes time.Good luck,Natalie.
Sosorry Nat I totaly missed your post, I had my surgery today WLE doctor said he is hopeful that we clearthe marginsbut have to wait for Pathology report which is two weeks to come back for that report...
I am glad you are free from this trouble and enjoying your time in Australia
Take good care
Cheers!
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Just Diagnosed
I first want to say thank you to everyone who has posted here and took the time to share their story and give advice. As I am trying to gather more information about this type of cancer it is nice to know I am not alone even though I keep reading how rare it is. I found out yesterday that I have DFSP. It is on my lower left breast and has been there for about 2 years. Like many of you, I was told this was nothing. I went to three different doctors (2 internist and 1 dermatologist) and they all told me it was just fatty tissue. Finally I said I want to see a breast surgeon. He thought it was nothing too but he said lets be safe and do a biopsy. I had surgery, the surgeon did an excisional biopsy. It took two weeks to receive the results and now I am going back to surgery so the doctor can get clean margins.
I have read there is a possibility of reccurance. My question is has anyone heard of DFSP happening in a new location of the body or does it only recur where you have had it?
~Grace
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Grace4 said:
Just Diagnosed
I first want to say thank you to everyone who has posted here and took the time to share their story and give advice. As I am trying to gather more information about this type of cancer it is nice to know I am not alone even though I keep reading how rare it is. I found out yesterday that I have DFSP. It is on my lower left breast and has been there for about 2 years. Like many of you, I was told this was nothing. I went to three different doctors (2 internist and 1 dermatologist) and they all told me it was just fatty tissue. Finally I said I want to see a breast surgeon. He thought it was nothing too but he said lets be safe and do a biopsy. I had surgery, the surgeon did an excisional biopsy. It took two weeks to receive the results and now I am going back to surgery so the doctor can get clean margins.
I have read there is a possibility of reccurance. My question is has anyone heard of DFSP happening in a new location of the body or does it only recur where you have had it?
~Grace
Hi Grace,
Im so glad this dicussion board has been of some help to you. But im sorry you found yourself in the position of needing to look for info on DFSP.
I wish I could help you more with the matter of reccuramce, but there doesnt seem to be a clear cut answer availiable, only a small % of people with DFSP reccurance situation and ,mostly it will occure in or around the scar area probably due to clear margins not being acheived. To be honest I have read lots about it over the last two yrs, but my ability to recall imformation exactly is pretty poor. But I do know some one who can point you in the right direction for more onfo. . You have probably read some of her posts -Ontario48 Jo. Hopefully she will have time to drop in and help out.
Its sounds like you have a strong will and have made the right choice in pushing to see a specialist.
Best wishes and Iwill check in again to see how your doing.
Nat.
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Clear margins!natmcg said:Hi Grace,
Im so glad this dicussion board has been of some help to you. But im sorry you found yourself in the position of needing to look for info on DFSP.
I wish I could help you more with the matter of reccuramce, but there doesnt seem to be a clear cut answer availiable, only a small % of people with DFSP reccurance situation and ,mostly it will occure in or around the scar area probably due to clear margins not being acheived. To be honest I have read lots about it over the last two yrs, but my ability to recall imformation exactly is pretty poor. But I do know some one who can point you in the right direction for more onfo. . You have probably read some of her posts -Ontario48 Jo. Hopefully she will have time to drop in and help out.
Its sounds like you have a strong will and have made the right choice in pushing to see a specialist.
Best wishes and Iwill check in again to see how your doing.
Nat.
Thanks Nat for responding! I just had surgery this week and got the pathology report back today. My doctor said they were able to get negative margins so I pray that reduces the chances of reccurance. I'll just stay positive
Grace
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1% Chance of New LocationGrace4 said:Just Diagnosed
I first want to say thank you to everyone who has posted here and took the time to share their story and give advice. As I am trying to gather more information about this type of cancer it is nice to know I am not alone even though I keep reading how rare it is. I found out yesterday that I have DFSP. It is on my lower left breast and has been there for about 2 years. Like many of you, I was told this was nothing. I went to three different doctors (2 internist and 1 dermatologist) and they all told me it was just fatty tissue. Finally I said I want to see a breast surgeon. He thought it was nothing too but he said lets be safe and do a biopsy. I had surgery, the surgeon did an excisional biopsy. It took two weeks to receive the results and now I am going back to surgery so the doctor can get clean margins.
I have read there is a possibility of reccurance. My question is has anyone heard of DFSP happening in a new location of the body or does it only recur where you have had it?
~Grace
Hello Grace,
I am glad you received good news on your pathology. The key to this cancer is to get it out with substantial clear margins. I have read and was told by my doctor that there is a 1% change of a recurrence elsewhere. Rare, Rare, Rare...they all say that...sick of hearing it. You know what to look for now so be diligent. Most recurrences are in the same primary site and usually occur within about 31/2 years. You will always need to monitor your skin for the rest of your life. Some have recurrences many years down the road. Even so know this isn't one of the "deadly" cancers like breast, bowel etc. Prognosis is good even if you get a regrowth. Just stay on top of it.
Cheers, Jo
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Hello
Hey members,
Just wondering how is every one doing? Thanks to all of you and Joe who helped me and guided me to right person. I am clear now and my Dr. is following up with me every year instead of 6 months which is a great news! Hope you all are doing good. I have been in touch wih Joe since my first post until today finally figured out how to post on main forum. Talk to you all later.
Jessie
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Ontario48 said:
1% Chance of New Location
Hello Grace,
I am glad you received good news on your pathology. The key to this cancer is to get it out with substantial clear margins. I have read and was told by my doctor that there is a 1% change of a recurrence elsewhere. Rare, Rare, Rare...they all say that...sick of hearing it. You know what to look for now so be diligent. Most recurrences are in the same primary site and usually occur within about 31/2 years. You will always need to monitor your skin for the rest of your life. Some have recurrences many years down the road. Even so know this isn't one of the "deadly" cancers like breast, bowel etc. Prognosis is good even if you get a regrowth. Just stay on top of it.
Cheers, Jo
Hello, I am checking in again. Just a note on what we gathered on recurrance from Canada (TO area) - our son has had two WM surgeries 2 years ago and many biopsies...first surgery (2-3cm wm) had postive test (was not closed even though I asked for 4 cm WM given medical report recommendations) and second 5 cm surgery 6-8 weeks later had negative test thankfully. We were informed that recurrance is high with this and good to wait...we were informed that recurrance typically happens (majority) in same spot and has much lower chance of relocation. We were told to try to minimize CT scans for children if possible that may start recurrance...We have been monitoring for 2 years now without any signs of recurrance (we meet with dermatolgists and surgeons to review every 4 months now) and so far, we will wait a few more years before reconstructive surgery if still negative. We were informed to wait at least 2 years (greatest likely hood for recurrance and best to wait a few more years) for best results (to address 5cm WM skin grafting on head). Our son is amazingly reslient, and with this, he looks forward with reconstruction down the road which is amazing at 4 yrs age now. Thank you for sharing to all - ryan and family.
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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
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