DFSP Friends.

Ontario48

Lone111 said:

Why?

Any studies suggesting why this cancer develops? Does anyone in here know of any? Or are DFSP survivor more likely to develop any other types types of cancers? I guess any fat tissue tumor in the future should be removed immidiately if I develop any? 

 

Chromasome Transition

Hi Lone, Jo again...

All of what I have read points to a transition (re-organization) of a couple of chromasomes.  They detach and then hook up with the other one.  It then produces a mutation that is cancerous.  Nothing you can do about it, it just happens.  I have also read we  are no more suseptable to any other cancers (sarcoma, skin or otherwise).  Regrowth can occur if not all the cancer cells are removed.  Only 1% regrowth elsewhere, almost always in the same spot if it does.  Doesn't seem to be inherited either.  Any lump you should get should be looked at and I would expect that due to this diagnosis your caregivers will be more diligent.  You will have a "go to person" now that you have a surgeon that is familiar with your case and also you should hook up with a dermatologist.  You know your body best, you are your best advocate.

Hope that helps...Jo

natmcg

Lone111 said:

Why?

Any studies suggesting why this cancer develops? Does anyone in here know of any? Or are DFSP survivor more likely to develop any other types types of cancers? I guess any fat tissue tumor in the future should be removed immidiately if I develop any? 

 

oh dear

Oh dear. Pushed send twice. Lol.

Lone111

Ontario48 said:

Chromasome Transition

Hi Lone, Jo again...

All of what I have read points to a transition (re-organization) of a couple of chromasomes.  They detach and then hook up with the other one.  It then produces a mutation that is cancerous.  Nothing you can do about it, it just happens.  I have also read we  are no more suseptable to any other cancers (sarcoma, skin or otherwise).  Regrowth can occur if not all the cancer cells are removed.  Only 1% regrowth elsewhere, almost always in the same spot if it does.  Doesn't seem to be inherited either.  Any lump you should get should be looked at and I would expect that due to this diagnosis your caregivers will be more diligent.  You will have a "go to person" now that you have a surgeon that is familiar with your case and also you should hook up with a dermatologist.  You know your body best, you are your best advocate.

Hope that helps...Jo

Thanks Jo and Nat

Thanks for your support. I've actually had an ok day today with only one breakdown. i told my husbands family today - very calm reactions. But ok I can see every one think "thank god it ist'n them"  The best reaction I have gotten so far was from an old friend who had breast cancer some years ago - so I expect she knows what best to say. She keept saing how sorry she was for me. i don't know why that was comforting but it was. Most others get silences or say good luck on tuesday... Anyways I don't why I was thinking of that it felt weird with thewhole fanily here today and talking about other things almost all of the time.

i'm sow scared for what will happen tuesday and i can't wait for the day to come fast enough. Did either of you have any help from a psycologist? I'm thinking if all goes well on tuesday it be like now you see it now you don't with the cancer. I will have had cancer for less than a week.... I don't know how to deal with that.

Lone111

Lone111 said:

Thanks Jo and Nat

Thanks for your support. I've actually had an ok day today with only one breakdown. i told my husbands family today - very calm reactions. But ok I can see every one think "thank god it ist'n them"  The best reaction I have gotten so far was from an old friend who had breast cancer some years ago - so I expect she knows what best to say. She keept saing how sorry she was for me. i don't know why that was comforting but it was. Most others get silences or say good luck on tuesday... Anyways I don't why I was thinking of that it felt weird with thewhole fanily here today and talking about other things almost all of the time.

i'm sow scared for what will happen tuesday and i can't wait for the day to come fast enough. Did either of you have any help from a psycologist? I'm thinking if all goes well on tuesday it be like now you see it now you don't with the cancer. I will have had cancer for less than a week.... I don't know how to deal with that.

Hi again

Night has come and my family is sleeping and i'm worrying again. 

Do either of you remeber how long test results for the lump you had cut out were?  I read somewhere in here about a surgeon who accepted 1 cm clean cuts. I don' t remember if my oncologist said anything specific. But i rememberr my GP when he cut it out talking about the lump being deeper and larger that he expected. How deep can the sugeon go? the lump my GP cut out was no more than 1x2cm so it wasn't A big lump.  But maybe it was deep. Two days more and then wait for the results.

Ontario48

Lone111 said:

Thanks Jo and Nat

Thanks for your support. I've actually had an ok day today with only one breakdown. i told my husbands family today - very calm reactions. But ok I can see every one think "thank god it ist'n them"  The best reaction I have gotten so far was from an old friend who had breast cancer some years ago - so I expect she knows what best to say. She keept saing how sorry she was for me. i don't know why that was comforting but it was. Most others get silences or say good luck on tuesday... Anyways I don't why I was thinking of that it felt weird with thewhole fanily here today and talking about other things almost all of the time.

i'm sow scared for what will happen tuesday and i can't wait for the day to come fast enough. Did either of you have any help from a psycologist? I'm thinking if all goes well on tuesday it be like now you see it now you don't with the cancer. I will have had cancer for less than a week.... I don't know how to deal with that.

Human Nature Lone...

Hi Lone,

Unfortunately most people dont' know what to say.  The ones you think that will step up and be there may not be and the ones you don't expect are 100% support to you.  Don't take offense.  Some of my friends didn't even call or visit.  The "C" word freaks everyone out.  It's so prevelant these days everyone is like you say, whew, thanks goodness it's not me.  That shows you how much people actually think about it.  And yes it's very bizzare...you know you have cancer for such a short time and then they remove it and you don't have it any longer.  But remember you've had it for some time.  It just wasn't diagnosed until now.  Focus on the fact that it can be removed and life will go on.  It WILL take some time to adjust and dont let anyone blow it off.  It's a lot to digest, take your time with it and you will find your own way to work through it.  AND we are here to help you along the way!!

For me, I re-read everything I learned.  I learned even more and it also helped me put it in perspective.  I have a good friend who  was diagnosed with breast cancer at the same time I found out I had DFSP.  I am well on my way to recovery but she has a year of chemo to do.  I felt very bad, didn't know how I should feel about what I was going through.  You make comparisons.  The good thing is I can talk and she can talk openly about cancer.  This is very helpful for both of us.  Your friend has been there. She gets it.  Know one can truely understand until they are standing in your shoes.

I didn't see anyone but I did take some medication for the anxiety.  Unfortunately I had side affects and stopped.  With me once I had the surgery a big weight lifted.  I was able to cope better.

Tuesday is a big day.  Make a list of questions, have someone with you for support...you will get through it.

Jo

Ontario48

Lone111 said:

Hi again

Night has come and my family is sleeping and i'm worrying again. 

Do either of you remeber how long test results for the lump you had cut out were?  I read somewhere in here about a surgeon who accepted 1 cm clean cuts. I don' t remember if my oncologist said anything specific. But i rememberr my GP when he cut it out talking about the lump being deeper and larger that he expected. How deep can the sugeon go? the lump my GP cut out was no more than 1x2cm so it wasn't A big lump.  But maybe it was deep. Two days more and then wait for the results.

Be patient, all will be fine...

Hi Lone...my first biopsy took 1 week.  When I went for the WLE it took a month.  This was because the specimen was larger and there was more to test.  It does take time.  Don't worry about that, they need to do what they need to do.  Remember there are others who are waiting too.  I figure better they take the time and do it right.  My doc took 1cm all round.  I was concerned initially as I had read 2-5 depending on the size.  But most Moh's surgery ends up with an average of 1cm clear margines.  So because my doc was a Moh's surgeon and only took the 1cm I figured he was going by his experience and statistics.  Makes for a better recovery.  The wound isnt so large.  Mine was clear.  My tumor was deep rather than wide.  They took the fascia (connective tissue) to make sure.  Its rare for it to go past the fascia...it kind of acts as a sheild. 

Where yours is gives them room to work.  Even if it ends up being a big incision it's not like they are taking away anthing you would miss (if you think of face/head/neck) situation.  I know this is stressful.  The not knowing what you will end up with as far as a wound.  I stressed about that to.  It's amazing what the body can do to heal its self.  I just kept thinking, I will give what I need to give to get it out.  And now that I am on the other side I think, I survived, it could have been worse (like my friend with breast cancer).  Who would ever think you'd compare cancers and say wow, I was actually quite lucky.

I was telling Nat yesterday I experiences two weeks of major anxiety recently.  I didn't cry through the whole ordeal.  I broke down afterwards when the doc said it was all clear.  I cried for a day straight and think I had a delayed reaction.  Everyone handles this differently.   But you will get through it because you have to.  It's the quiet times that your mind races.  This will settle with time.

Stay strong...check in and we are here for you.  Best thoughts for you for your surgery.

Jo

natmcg

Ontario48 said:

Human Nature Lone...

Hi Lone,

Unfortunately most people dont' know what to say.  The ones you think that will step up and be there may not be and the ones you don't expect are 100% support to you.  Don't take offense.  Some of my friends didn't even call or visit.  The "C" word freaks everyone out.  It's so prevelant these days everyone is like you say, whew, thanks goodness it's not me.  That shows you how much people actually think about it.  And yes it's very bizzare...you know you have cancer for such a short time and then they remove it and you don't have it any longer.  But remember you've had it for some time.  It just wasn't diagnosed until now.  Focus on the fact that it can be removed and life will go on.  It WILL take some time to adjust and dont let anyone blow it off.  It's a lot to digest, take your time with it and you will find your own way to work through it.  AND we are here to help you along the way!!

For me, I re-read everything I learned.  I learned even more and it also helped me put it in perspective.  I have a good friend who  was diagnosed with breast cancer at the same time I found out I had DFSP.  I am well on my way to recovery but she has a year of chemo to do.  I felt very bad, didn't know how I should feel about what I was going through.  You make comparisons.  The good thing is I can talk and she can talk openly about cancer.  This is very helpful for both of us.  Your friend has been there. She gets it.  Know one can truely understand until they are standing in your shoes.

I didn't see anyone but I did take some medication for the anxiety.  Unfortunately I had side affects and stopped.  With me once I had the surgery a big weight lifted.  I was able to cope better.

Tuesday is a big day.  Make a list of questions, have someone with you for support...you will get through it.

Jo

good morning Lone

I'd just like to say I agree wth every thing Jo has said. And add a little about my experience. I also have a good friend who has survived breast cancer, she had a double mastectomy endured cemo for many mths and finaly had breast reconstruction...she was and still is very supportive,and often asks am I keeping an eye on my scar for any changes. She also has a great sense of humour and when I was stressing about not knowing how much will need to be removed she said, " well at least you get to keep your nipples." My family were supportive in there own way but they didn't really want to talk about the subject. So finding this forum was great for me I read every ( and I mean EVERY) DFSP story or comment that had been posted hear in the last five yrs. And even had a few replies to my early posts alll of which when I read now sound a bit desperate. But I like you now, needed to express my fears and connect with people that understood. Jo is right Lone,like hers and mine your DFSP is located where there is plenty of stretch on the flesh and no one need ever see your scar. As you know I had Mohs surgery, which meant sitting around with pading on an open wound the size of a.mobile phone,for over three hrs while they did the pathology. But at least my surgon told me.he was 99.9% sure he got it all before I went home. And then at my checkup three wks later he confirmed that clear margins were achieved. We knew from the biopsy that it had gone down to the fat tissue so he removed everything down to the muscle. This did make the area very tender for the first few mths but it's ok now. My Dr actually offered me a valium before surgery because although I thought looked calm but my high blood pressure told them different, he needed me to stay awake and I was glad I said yes to the valium. I was always awear of what was going on but thanks to the valium I stayed relaxed. Also don't be afraid to ask for some strong pain killers. I found they realy helped and I was never too uncomfortable.</
I'll check on again soon.
Take care
Nat.p>

Lone111

Thanks again Nat and Jo

Thank you for being here and checking in every day. I have been feeling strong today - like a survivor  :-) and i have had the time to read all the older posts (the first day i signed i in i had not seen that one of the dfsp threads were 5 pages long) but it made me realise some things - first my case seems very small and i propably shouldn't worry (i probably will worry some anyways) second how lucky i am that you both checked in here and has been holding my hand these past couple of days when i really felt so scared and so alone. I cry while reading your posts but i end up feeling stronger And comforted.

nat how is your brother doing?

and i found the questions i need to ask my oncologist tuesday. I need to know which size clear margins he'll accept. I think I will try to persuede him to go with larger clear margins. I had a Caesarean with my first child only an inch from he'll be cutting so it not a worry.

I guess if the chest x-ray come back clear, i'll survive.

Lone111

natmcg said:

good morning Lone

I'd just like to say I agree wth every thing Jo has said. And add a little about my experience. I also have a good friend who has survived breast cancer, she had a double mastectomy endured cemo for many mths and finaly had breast reconstruction...she was and still is very supportive,and often asks am I keeping an eye on my scar for any changes. She also has a great sense of humour and when I was stressing about not knowing how much will need to be removed she said, " well at least you get to keep your nipples." My family were supportive in there own way but they didn't really want to talk about the subject. So finding this forum was great for me I read every ( and I mean EVERY) DFSP story or comment that had been posted hear in the last five yrs. And even had a few replies to my early posts alll of which when I read now sound a bit desperate. But I like you now, needed to express my fears and connect with people that understood. Jo is right Lone,like hers and mine your DFSP is located where there is plenty of stretch on the flesh and no one need ever see your scar. As you know I had Mohs surgery, which meant sitting around with pading on an open wound the size of a.mobile phone,for over three hrs while they did the pathology. But at least my surgon told me.he was 99.9% sure he got it all before I went home. And then at my checkup three wks later he confirmed that clear margins were achieved. We knew from the biopsy that it had gone down to the fat tissue so he removed everything down to the muscle. This did make the area very tender for the first few mths but it's ok now. My Dr actually offered me a valium before surgery because although I thought looked calm but my high blood pressure told them different, he needed me to stay awake and I was glad I said yes to the valium. I was always awear of what was going on but thanks to the valium I stayed relaxed. Also don't be afraid to ask for some strong pain killers. I found they realy helped and I was never too uncomfortable.</
I'll check on again soon.
Take care
Nat.p>

My post is in the bottom

Hi i pressed reply on the latest post from Nat but this time my post went to bottom of the thread - maybe it is were it belongs, but this site sure works in wonderous ways.

natmcg

Lone111 said:

Thanks again Nat and Jo

Thank you for being here and checking in every day. I have been feeling strong today - like a survivor  :-) and i have had the time to read all the older posts (the first day i signed i in i had not seen that one of the dfsp threads were 5 pages long) but it made me realise some things - first my case seems very small and i propably shouldn't worry (i probably will worry some anyways) second how lucky i am that you both checked in here and has been holding my hand these past couple of days when i really felt so scared and so alone. I cry while reading your posts but i end up feeling stronger And comforted.

nat how is your brother doing?

and i found the questions i need to ask my oncologist tuesday. I need to know which size clear margins he'll accept. I think I will try to persuede him to go with larger clear margins. I had a Caesarean with my first child only an inch from he'll be cutting so it not a worry.

I guess if the chest x-ray come back clear, i'll survive.

This has happened before.
Hello Lone,
Glad your feeling a bit stronger and more informed as your surgery day gets closer.
This forum is great but every now and then things get mixed up. When they did an upgrade a while ago I lost a lot of stuff like friends list,and emails. But you get used to navigateing around in here after a while. Now that you have read some of the other DFSP post you are able to look at your situation in a new perspective. I know I did.
Thanks for asking about my brother,he is.doing as well ad.can be expected. Radiation not only kills the cancer but because it was.conentated around his throat he now has very little taste,no saliva(dry mouth) which makes it very hard to swallow and the list of other side effects keeps going. But he had a very caring wife and grown up children and he has set a goal to be well/strong by Oct.as that is when jis youngest daughter is planing to marry.
He and I were supposed to go back to Ukraine earlier this yr and meet some family from my fathers side. But I was diagnosed with my cancer and then him. Sometimes I feel terrible he has had to endure so much....I had one operation and my cancer is gone. Doesn't seem fair.

You mentioed a chest x ray. Do has your Dr already arranged that to happen.
My specialist hasnt mentioned any test to me at all. But I will be asking him of I should have an MRI(I can't have x rays any more due to a benign brain tumor). Jo hasn't had any other test done either as far as I know. It still seems strange to that checking the chest/.lungs isn't a routine thing for DFSP patients to have done.
I'll sign off now as its getting. late you will be in my thoughts and prayers today.
Natalie.

Ontario48

Lone111 said:

Thanks again Nat and Jo

Thank you for being here and checking in every day. I have been feeling strong today - like a survivor  :-) and i have had the time to read all the older posts (the first day i signed i in i had not seen that one of the dfsp threads were 5 pages long) but it made me realise some things - first my case seems very small and i propably shouldn't worry (i probably will worry some anyways) second how lucky i am that you both checked in here and has been holding my hand these past couple of days when i really felt so scared and so alone. I cry while reading your posts but i end up feeling stronger And comforted.

nat how is your brother doing?

and i found the questions i need to ask my oncologist tuesday. I need to know which size clear margins he'll accept. I think I will try to persuede him to go with larger clear margins. I had a Caesarean with my first child only an inch from he'll be cutting so it not a worry.

I guess if the chest x-ray come back clear, i'll survive.

Good Luck Tuesday! You will ROCK!

Hello Lone,

I just checked the time and your day is almost over.  Our happy thoughts will be with you for a successful surgery tomorrow. Be restful for a few days and take your time to heal.  Check in when you can and let us know how it went.  We are happy to wait for results with you

Jo

Ontario48

natmcg said:

This has happened before.
Hello Lone,
Glad your feeling a bit stronger and more informed as your surgery day gets closer.
This forum is great but every now and then things get mixed up. When they did an upgrade a while ago I lost a lot of stuff like friends list,and emails. But you get used to navigateing around in here after a while. Now that you have read some of the other DFSP post you are able to look at your situation in a new perspective. I know I did.
Thanks for asking about my brother,he is.doing as well ad.can be expected. Radiation not only kills the cancer but because it was.conentated around his throat he now has very little taste,no saliva(dry mouth) which makes it very hard to swallow and the list of other side effects keeps going. But he had a very caring wife and grown up children and he has set a goal to be well/strong by Oct.as that is when jis youngest daughter is planing to marry.
He and I were supposed to go back to Ukraine earlier this yr and meet some family from my fathers side. But I was diagnosed with my cancer and then him. Sometimes I feel terrible he has had to endure so much....I had one operation and my cancer is gone. Doesn't seem fair.

You mentioed a chest x ray. Do has your Dr already arranged that to happen.
My specialist hasnt mentioned any test to me at all. But I will be asking him of I should have an MRI(I can't have x rays any more due to a benign brain tumor). Jo hasn't had any other test done either as far as I know. It still seems strange to that checking the chest/.lungs isn't a routine thing for DFSP patients to have done.
I'll sign off now as its getting. late you will be in my thoughts and prayers today.
Natalie.

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

Lone111

Ontario48 said:

Good Luck Tuesday! You will ROCK!

Hello Lone,

I just checked the time and your day is almost over.  Our happy thoughts will be with you for a successful surgery tomorrow. Be restful for a few days and take your time to heal.  Check in when you can and let us know how it went.  We are happy to wait for results with you

Jo

Done with surgegy

Yes definitely get you're chest checked out to make sure it hasn't spread there.

I'm out of surgery and feel like the worst it over. It was actually a very nice a had while they operated:-) my chest x-ray was fine and the surgeon cut a large piece out of my hip/groin area all the way down to the bone. I have a lot of painkillers for the next couple of days.

1-2 weeks he get the pathology - he told me that he would accept 8 mm clear margins which i think sound good.

Nat: I'm so glad to hear that your brother is still alive and hope that the bad side effects of the treadment will get better. I totally understand how you feel a bit bad about what you're brother has been trough compared to us getting of with one surgery. My brother-in-law is dying from cancer in the connective tissue. Like me he had a fat tissue lump removed - his came back with a far worse cancer. And they have been so supportive of me. Yes I also feel bad about that.

Jo and Nat if you are in Europa I'll fly in and buy you dinner :-)

natmcg

Lone111 said:

Done with surgegy

Yes definitely get you're chest checked out to make sure it hasn't spread there.

I'm out of surgery and feel like the worst it over. It was actually a very nice a had while they operated:-) my chest x-ray was fine and the surgeon cut a large piece out of my hip/groin area all the way down to the bone. I have a lot of painkillers for the next couple of days.

1-2 weeks he get the pathology - he told me that he would accept 8 mm clear margins which i think sound good.

Nat: I'm so glad to hear that your brother is still alive and hope that the bad side effects of the treadment will get better. I totally understand how you feel a bit bad about what you're brother has been trough compared to us getting of with one surgery. My brother-in-law is dying from cancer in the connective tissue. Like me he had a fat tissue lump removed - his came back with a far worse cancer. And they have been so supportive of me. Yes I also feel bad about that.

Jo and Nat if you are in Europa I'll fly in and buy you dinner :-)

Wow! down to the bone!!

Lone your on the road to recovery And you sound great no slurring of words from the painkillets lol. Did your biopsy show that the cancer had gone past tbe fat and muscle layers or was the Dr.just being very thorough? Rest as much as you can. I hope you have someone to help with the children. I realized when I was re- reading some of theposts that I didn't answer your question about my boys. The eldest is married to a school teacher and they have the baby girl, they live only 15mins away and we see them a at least once a wk if not more. The other two still live at home and we recently had my middle sons American girlfriend come to live with him/us for 12mths. Luckily they have their own bathroom,kitchen ,bedroom and living space down stairs but they eat with us most nights. I sent an email to csn asking if there is any way they can group all the DFSP threads under one heading. That way all the information written by all the different people would be easier to access. They haven't got back to me yet. . Oh and I might just hold you to that dinner offer. My husband and I are planning to visit Europe again sometime nxt yr. Just waiting to see how long it will take for my brother to be well enough to travel as the original plan was for us to meet up in Ukraine for a while then go separate ways again. Im sorry about your brother in law. I have never heard of connective tissues cancer, but it sounds painful. Take care Lone. Hey Jo. Do ya want me to swing past and pick you up.....Lones invited is to dinner!! We can compare scars.lol.

You gotta laugh girls our crying days are done. See ya Nat.

Ontario48

Lone111 said:

Done with surgegy

Yes definitely get you're chest checked out to make sure it hasn't spread there.

I'm out of surgery and feel like the worst it over. It was actually a very nice a had while they operated:-) my chest x-ray was fine and the surgeon cut a large piece out of my hip/groin area all the way down to the bone. I have a lot of painkillers for the next couple of days.

1-2 weeks he get the pathology - he told me that he would accept 8 mm clear margins which i think sound good.

Nat: I'm so glad to hear that your brother is still alive and hope that the bad side effects of the treadment will get better. I totally understand how you feel a bit bad about what you're brother has been trough compared to us getting of with one surgery. My brother-in-law is dying from cancer in the connective tissue. Like me he had a fat tissue lump removed - his came back with a far worse cancer. And they have been so supportive of me. Yes I also feel bad about that.

Jo and Nat if you are in Europa I'll fly in and buy you dinner :-)

There's no stopping you...you go girl!

Wow, Lone look at you keeping us posted the minute you get out of surgery.  You truely are a trooper.  Here's to a good pathology report!!  As Nat says just chill and relax, let the family help you.  YOu want to take the time to heal.  We pray for clear margins.  And of course Nat, swing by and grab me and then we head to Lone's for dinner. We may have to cook it though, she has a sore hip.

One thing we didn't mention Lone, Nat and I, will all our similarities, have the same ethnic background.  My dad's family came from the Ukraine.  Can you believe it.  I have never jumped on any other cancer site and right away I meet Nat, she's our DFSP site hostess...she had hers in the same spot as me.  Havent' read about anyone else having it where we had it so it was nice to chat with Nat.  Glad you connected with us too.

Happy thoughts and will chat soon...Jo

 

Lone111

Ontario48 said:

There's no stopping you...you go girl!

Wow, Lone look at you keeping us posted the minute you get out of surgery.  You truely are a trooper.  Here's to a good pathology report!!  As Nat says just chill and relax, let the family help you.  YOu want to take the time to heal.  We pray for clear margins.  And of course Nat, swing by and grab me and then we head to Lone's for dinner. We may have to cook it though, she has a sore hip.

One thing we didn't mention Lone, Nat and I, will all our similarities, have the same ethnic background.  My dad's family came from the Ukraine.  Can you believe it.  I have never jumped on any other cancer site and right away I meet Nat, she's our DFSP site hostess...she had hers in the same spot as me.  Havent' read about anyone else having it where we had it so it was nice to chat with Nat.  Glad you connected with us too.

Happy thoughts and will chat soon...Jo

 

I feel great :-)

Nat: I get an error when trying to view your friend request - I'll try to write to the csn support.

That is a great coinsidence that your families both come from Ukraine - how far back did your families move? My family is from Denmark.

My kids have been spending the past few days at my in-laws and they will be back to night - I'm so looking forward to seing them again :-)

In regards to your question Nat, as I remember the tumor I had removed at my GP was only about 0,5 x 1,5 cm but as my surgeon said he could not know the position it had inside my hip, so I think he was just being thorough when cutting all the way to the bone. I think he cut out a piece as large as 4x5x5 cm.

I have been trying to find anything about DFSP being most likely to spread to the lungs but no luck, but my surgeon was sure that it had to be checked out.  

Ontario48

Lone111 said:

I feel great :-)

Nat: I get an error when trying to view your friend request - I'll try to write to the csn support.

That is a great coinsidence that your families both come from Ukraine - how far back did your families move? My family is from Denmark.

My kids have been spending the past few days at my in-laws and they will be back to night - I'm so looking forward to seing them again :-)

In regards to your question Nat, as I remember the tumor I had removed at my GP was only about 0,5 x 1,5 cm but as my surgeon said he could not know the position it had inside my hip, so I think he was just being thorough when cutting all the way to the bone. I think he cut out a piece as large as 4x5x5 cm.

I have been trying to find anything about DFSP being most likely to spread to the lungs but no luck, but my surgeon was sure that it had to be checked out.  

Glad you are on the mend!

Good morning (here) Lone.  Glad to hear you are doing so well.  Enjoy the kiddies and rest today.  Not sure if who sent me a friend request but I too got a system error.

Have a great day, Joanne

Ontario48

Ontario48 said:

Glad you are on the mend!

Good morning (here) Lone.  Glad to hear you are doing so well.  Enjoy the kiddies and rest today.  Not sure if who sent me a friend request but I too got a system error.

Have a great day, Joanne

Seems to be system problems

I seem to be missing some new posts, appologies if I've not responded to something...send an email if you like.

JO

Lone111

Thinking a lot

Hi I hope you can help with some question i have been thinking about. Can the immune system kill cancer cells or are cancer cells to much like you r own cells or is it because they multiply to fast for the immune system to be able to defeat them? I'm offcourse wandering about that because i will never know if all the cancer cells are removed.

Another question. I've read on eg wiki that dfsp metastasize in 2-5% cases but i have not read anything about anyone in here or on other sites where it has happened or where it metastasizes to. I guess if my patology comes back with clear margins I have to believe that it has not spread anywhere else?

 

Ontario48

Lone111 said:

Thinking a lot

Hi I hope you can help with some question i have been thinking about. Can the immune system kill cancer cells or are cancer cells to much like you r own cells or is it because they multiply to fast for the immune system to be able to defeat them? I'm offcourse wandering about that because i will never know if all the cancer cells are removed.

Another question. I've read on eg wiki that dfsp metastasize in 2-5% cases but i have not read anything about anyone in here or on other sites where it has happened or where it metastasizes to. I guess if my patology comes back with clear margins I have to believe that it has not spread anywhere else?

 

How Are You Feeling?

Hello Lone...I put a few  posts on the other thread Dermofibrosarcoma Protuberans (DFSP), I had a hard time finding some of the threads there so I first searched it in "content" and then linked from there and was able to see all the pages...go to page five (Nat our DFSP hostess helped me with that ").

I haven't read much about the immune system and cancer.  I do know in general that a strong immune system helps in the fight against cancer and many other diseases.  There was a recent study a friend found that scientists had found receptors that pin point how cancer cells speak to normal cells and infiltrate them.  The idea is to come up with something that changes the messaging to promote healthy cells to remain healthy.  Pretty cool.

In regards to mets, I've only found a couple reports of those who had mets.  The most common spot is in the lungs, this is true for most sarcomas.  Some doctors do a chest CT or MRI to screen for this.  Some to do not.  Even though the numbers are very low most of those who have mets to the lungs have the FS-DFSP variant, a higher grade malignancy.  Standard DFSP mets to the lungs is even rarer.  Looks like a lot of patients in the USA have an MRI or CT as standard routine.  My doc didn't do it (skin cancer specialist-dermatologist).  He said only for recurrence or FS variant.  I will be seeing a sarcoma specialist for my follow up and management (I rant about that on the other thread).  I will discuss this with her and get her opinion. For piece of mind I would like a chest screen as part of my baseline moving forward.  Adult soft tissue sarcomas represent 1% of all adult cancers.  DFSP is a smaller precentage within that and of those 2-5 percent get mets to the lungs.  So if they don't test them how do they know.  The cases I read they got it later in life (5 - 15 years later).  No regrowths just distal cancer in the lungs, confirmed to be DFSP.  So for me it would be nice to know if I get a clear chest screen so if something should happen down the road we have a benchmark.

Push for it, cry if you have to LOL!

Take care...Jo