DFSP Friends.

RHC said:

Thank You

 

Thank you for taking time to reply to my fearful rant. I flutter between being ok and crying - not in front of my husband. He's afraid too but we only talk about it at certain times.  Today so far I'm good. I guess what keeps it in our face is the mess of the incision site where the dermatologist 'removed' it. As of last night 3 of the eight outside stitches are in place, it's gaping more everyday, there is redness spreading out and the idiot who did it is on vacation this week and regardless did not want to see my husband again anyway. Who do we see? I don't know if things will be ok to our April 9 appointment. There were fourteen stitches some on the inside and I worry about the ones I can't see. No bleeding though which is good. I guess I'll try to get him in to the nurse practioner today so that he can at least be looked at somewhere, he might need more antibiotics, and stitches.

From what I've read I understand that DFSP is highly treatable, and has a very low mortality rate but I also read qualifiers that say depending on the site, or location. I;m assuming that that refers to the lungs but I also can't tell you how -I dont want to say excited- eager our DFSP Dr is to have hubby as a patient because of the location, husband says that the Dr should be paying him for the opportunity! 

It's wait and see, very hard to do. Kids are on spring break but we can't do anything so time's passing very slow.

 

Thank you again for sharing your experience  and knowledge, and for grounding while things are spinning out of control,

Helen

6mth check all ok.

Hi everyone I finally went for my 6mth check. ( it's actually been 8mths since my final surgery) As I expected the Dr is really happy with my scar and surrounding area I do have a bit of an indent but that's due to the fat tissue being removed and in time it will probably even out. He has actually got a new Dr.joining his practice and it was great to meet him and talk to him today.This new Dr has been researching and updating information on DFSP as well as dealing with DFSP at a hospital in England. He will be publishing his findings later this yr. Dr Saleem Loghdey.he is a specialist dermatologist and Mohs surgon . I asked them why is it that some people with DFSP are treated by dermatologists and others are referred to sarcoma specialist. They both agreed that if they were your run of the mill dermos they would not attempt dealing with DFSP(although some do) but as my dermo has studied Mohs, oncology, and pathology(in the USA) he would see no reason for me to go else where and now with his new partner I feel I'm going to the best informed Drs. As well I have been comfortable from the very start with my Dr he was very calming and reassuring when I was first diagnosed and sent to see him.

He commented today on how relaxed I was. Maybe because on our first meeting I was a complete basket case...I had CANCER I had just gotten the all clear for another health issue and then I scared myself silly by Googleing way to much.

My lymph nodes on neck, under arms&groin were checked today...all ok.and the Drs don't see any reason for more scans or test at this point. Just 6mthly checkups until I get to the 5yr mark. Then it will be up to me if I want to come back or monitor my own checks. So I'm a happy chappy today.:-) Time to celebrate...hmm ..anyone care for glass of wine.! ;-)

Lone111 said:

Sun is shining -  temperature

Sun is shining -  temperature just above 0 celsius, soon daffodils will be blooming - Are you picking up Nat on the way?

I'm back at work and my DFSP seems so far away - it is amazing how fast things changes - not even a month ago I was planning my funaral and now I'm planning summerholiday - latter being much more fun.

Everybody keeps asking if I'm really doing ok - mentally - I think I am. Did any of you have any late reactions? I think I have such a strong and overwhelming first reaction I hope I'm done with it...

Jo and Nat you are doing amazing things in here :-) and probably elsewhere too I just can't see that :-)

/lone

other side of the sun.

Hi lone

Your warming up(so is Jo) and my days are getting shorter and cooler,and its been raining. But thats ok because Im on the coast and it doesn't snow here. Great to hear you life is getting back to normal. It certainly is a strange cancer we all had. "Here today gone tomorrow" and our recovery is quite different from other cancers.....no chemo sickness .....no radiation side effects....just scars. Yes there are some people with this that do need way more surgery than we did and some have to live with disfiguring scars and some need to take medications or have radiation to stop or slow down the DFSP spreading. But we have been very lucky ,we still have that bit of uncertainty wether it will come back, but compared to others we have been blessed.

. I still remember how scared I was six mths ago yet I feel so at ease now, I think mostly because I have all the facts about DFSP. And Im confident that I fall into that very unlikely to reoccurre % that Jo has written about. This discussion board is wonderful. Here we are from all around the world yet we have a very major thing in our lives in common, and we can share information, expriences and support each other. When I read new posts it's like Im going through it myself again and I just want to hug that person(or their carer) and say it's going to be ok. I suppose in time we may not visit here as often, but I'd like to think that we will check in to see what's going on. If I hadn't had any responses when I logded on I probably wouldn't be still posting today. Those people truely understood how alone I felt and that helped a lot in those early days.

One in a million thats us. ;-)
Nat.

PS, There are two other new posts on the other thread. Saywhaat. And mykidisthebest is their CSN names I think. Bit tricky to find page 5&6 I think. Bye.

Ontario48 said:

A few bumps but all in all...GOOD!

Hey Lone,

I am one of those take charge and run kind of types.  With this I did that.  Had a few bad days but really no tears for me.  So once I got the all clear it was a flood gate.  Took the day off work and cried a river with my best buddy.  Thinking that was the end of it.  Then about a month later I had a "delayed" reaction.  I had about two weeks of anxiety.  Wouldn't go out.  Didn't answer the phone.  Couldn't keep my business meetings.  I couldn't breath, felt like throwing up all the time and had heart palpatations and brutal headaches.  Thought OMG, I'm losing it.  The phone rang and I'd sweat and get the shakes.  Luckily for me we had lots of snow days (I travel a distance to work so had to work from home those days) so I got throught it without anyone knowing what was going on (pride). 

It's crazy stuff.  Nothing I could have predicted.  I still have moments but all in all I think I am past the worst of it.  TTL (Thank the Lord).  Hoping my holiday away in Cuba, lying on the beach doing nothing with my best buddy will bring me back to my normal. That and also having the follow up with my STS doc.  The key is to not let lingering things bother you.  Clear up all the unknowns and move forward.  I see my next appointment as a milestone.  For me information is key...I don't like lose ends in anything I do.

So Lone, no matter what comes your way, ride the wave and work through it.  That's the only advise I have.  I suspect it's different for everyone.  Hold on to the positive things and the things that make you happy.

GOLF is just around the corner for me.  Can't wait to get back at that!!  I love the spring and summer.  Best time of the year.

Cheers for now...Jo

INTRUDER ALERT!!
SOME PEOPLE REALLY ANNOY ME.
Why would anyone think we want to read their dam adds
Iv flagged it. So if you can't see the add then csn has alredy removed it

Lone111 said:

thanks for sharing again -

thanks for sharing again - saved by the snow. I am glad to hear your are over it again and i guess there is no way of knowing if something like that will hit before it does.

Nat: thanks for the alert.

Helen: i hope you can find time to give us an update oneof these days -  i have been thinking of you and your husband and I hope you get some good news today or at least some answers that will help you.

 

My father was admitted to the hospital friday and died today. He was old 79 and demented and had been waiting for dead for some years now so it wasn't/isn't really sad. He retired 20 years ago and on that day he sat down in a chair in front of the television and haven't moved for 20 years. He never ate fish, never ate a vegetable or anything else healthy for that matter. I use to think of him and think that since i have half of his genes i can't possible ever get any illness like cancer or anything since he can live like that and not get sick..Well he got sick with diabedes and dementia these last couple of years And I got cancer. Sorry I always think a lot about things, trying to make sense of them. 

have a nice day everyone

lone

So sorry
lone, Im sorry to hear of your dad's passing.:-(

My dad died when I was 29 he was only 65 and had been sick wth multiple myeloma( cancer) for 2yrs. So we we're preparied ( kind of). But it is always a great loss, and you will have good and bad days until the grieving process has taken its course.

My heartfelt sympathy to you and your family. Dealing with death in ways is similar to dealings with illnesses( cancer) we all have different time frames of emotions in these situations but eventually we get over it and.on with our lives. And you don't need to apologize about sharing your feelings....we have supported each other through DFSP and I feel are now friends, you have shown concern for my different health & family issues(my brother for one) and I understand if you want or need to share with us here. Please don't forget to take care of yourself, you are still recovering /healing
from your DFSP ordeal.

Thinking of you at this difficult and sad.time
Natalie.

Ontario48 said:

Yes, One in A Million Club!

Hi CIK,

Can you believe it.  We were all shocked as you find yourself now.  Sounds like you will have Moh's Surgery.  Key is removal, if you can push for chest screen do so.  Read up on STS, soft tissue sarcoma.  This cancer is in that family, more info there.  Not sure what you have read but all indications are if you have a sarcoma, see a sarcoma specialist.  Tends to go with a dermatologist due to it being in the skin. But this is a tricky cancer.  High survival rate all in all but growth patterns are tricky and pathology is tricky.  It so rare studies are all over the place, not much $$ dedicated for research.

STS represent 1% of all adult cancers, DFSP is rare within that group.  Very rare to spread to lymph nodes or distant (lungs).  Recurrence will depend on surgical removal, margins to clearance.  Get a good surgeon who has experience with this.

Lots of great support on here...I am sure you will hear them chime in soon.

Joanne

caroleinnkeeper

Hi and welcome to the club you never wanted to join but now your here welcome to our little discussion group. J

oanne has already stated the most important points. Having Drs and pathologists that deal with sarcomas is the key to getting those clear margins we all are so use to talking about. Clear margins are our best chance of nil reoccurring but still not a 100% guarantee. You didn't mention where you live. Some of us with DFSP have had to travel out of our home towns to see the most experienced Drs.
. I am fortunate that my dermo is a Mohs surgon,sarcoma specialist and a pathologist who had delt wth DFSP many times before my case and now he has a DFSP research Dr workingwith him who is recompiling DFSP info and will publish up-to-date finding later this year. I had my 6mth checkup recently and read all the certificates on the waiting room wall(even though I had.check it all out on my drs web page) because it is so important to be confident with the people dealing.with your health. Joanne also mentioned the chest xray. My Drs don't feel I need one because I fall.into the very unlikely.to reoccur percentage.of the.overall.DFSP group BUT I will probably get one.through my GP just for my own peace of mind. :-)
Good luck and hope you stay say in touch

Natalie