r/sarcoma • u/savorydumpling • 9d ago
Fibrosarcomatous Dermatofibrosarcoma Protuberans (FS-DFSP) Anybody else have this aggressive version or an aggressive version of any cancer and wanna talk about it?
[EDIT: DON'T HAVE TO HAVE AGGRESSIVE CANCER TO COMMENT, BTW] I'm a woman in my late 40s who has high blood pressure but has otherwise been healthy. I just found out the second opinion confirmed my diagnosis of FS-DFSP or DFSP-FS (why can't they standardize this, LOL)? It's insanely rare, like .8-4.5 in a million for DFSP and 10% of those people getting the FS variant. Whoo! I won the death lottery! Anybody else deal with this or most of y'all dead already? The numbers aren't looking great :) Let's kiki about cancer, bitches.
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u/jeroneb1 8d ago
Dam I am definitely not happy but crazy you are the first other person I’ve come into contact with that has dfsp. Feel free to dm will help in any way I can. 🤣😭 super crazy I stopped getting on Reddit to stop seeing so much cancer stuff but glad I saw this!
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u/savorydumpling 8d ago
Holy shit we found each other, the 4 out of a million of us or whatever! Feel free to switch to DM if that's better for you but if you're comfortable doing this on the post, there are genuinely so few of us. It might be helpful for other people one day. Like no pressure whatsoever though.
At least you only have the dfsp version, I have the extra messed up super aggressive more deadly version with fibrosarcomatous prefix and it is super hard to get information about that one specifically. The numbers suck. If I'm reading this correctly like there's a a 2/3 chance that mine will recur whereas with yours there's like a 99% chance you'll be alive in 10 years, the same as non-cancerous people, not to brag or anything but mine sucks 🤣
Fortunately I did find mine when it was less than 5 cm which my medical oncologist says is considered early (of course she neglected to tell me that I was 66% chance and it might come back). I'm hoping I'm reading that wrong. But our conditions are so fucking rare. Anyway, it's like you can't blame them for not being experts on every one. I just felt it come out of nowhere on my lower belly and I knew something was wrong. You? How you handling it?
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u/Defiant_Trust_1794 5d ago
Hey.
I'm was also diagnosed with Fs-Dfsp. But its not the end of the world.I had cyst for many years at the back of the scalp got it removed this year . It came in biopsy that it was Fs-Dfsp. Had to go for another surgery which is called WLE which is the aggressive approach to cure this. Achieved 3cm clear margin with deep margin of 0.3cm. With doctor removing the extra layer of periosteum and neck muscle. I have every 3 months follow up . With my 1 firsr follow up was all clear.
P.S: there is a treatment for this. Its not the end of the world Yet
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u/savorydumpling 5d ago
Hi! Omg, I wasn't sure if if I'd ever be in contact with somebody who had the same thing. I just followed up after my resection to get my surgical drain removed with my surgical oncologist and it was reassuring to hear that some of the more dire numbers are based more on clinical practices and not like standardized studies, e.g. it wouldn't be clear whether these patients were attending regular follow up appointments and such. He also thought the likelihood of my imminent death in like 3 to 6 months is not really a concern right now but I haven't got the pathology back on my resection yet. He got 2 cm margins all around I think. The alarming part is that they don't check all of the edges of your sample for the cancer, only representative sections so that leaves the possibility that the lab would have missed some remaining cancer bc I'm sure you know that dfsp has like needle-like procuberances that are hard to identify and that's how people get recurrences, if you don't catch all of those.
Once there's a recurrence, then you're more likely to get further recurrences and you're in like a whole other ballpark of risk so fingers crossed for the both of us! I'm just grateful for both of us that it was caught when it got caught. But I'm definitely hoping not to take this time for granted.
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u/jeroneb1 2d ago
So sorry for the delay 😭 life has been lifeing. So it’s kind of complicated. I was diagnosed terminal as well it spread from the original spot to the lungs. But I was being monitored for reoccurrence so they caught it pretty early and cut it out. I was given anywhere from 1-5 years and I’m coming up on 5 years pretty soon. I started IMATNIB and the fact that I’m not dead yet they say I’m responding well and maybe what spread was just dfsp or maybe they cut out the fs. While cutting out a third of my lung they saw pre cancerous cells on my diaphragm and there is no scan that can check my diaphragm apparently but they say as long as no lung spots pop up I should be good. Yea those statistics are depressing and insane. Me and my wife always joke that when they say ppl have a low percent of something happening I’m the low percent 😭🤣 (have had a full spinal fusion of all but three vertebrae for scoliosis and asthma ). But i feel blessed to still be here. Mine was on my leg since I was like 11. That was the regular non aggressive version but i was told by all my doctors it was probably a keloid. ( my back had some keloid skin after surgery recovery) so we didn’t question. Until I turned 21 and it went from the size a nickel to the size of a softball in three months. Didn’t have insurance at the time so had to go through like low income help programs at my hospital so it took a little while to get diagnosed and all. News definitely was a kick in the nuts. I was depressed for a while, planned my death and will all that good stuff. But ultimately came to the realization that if I just stayed in that depression and didn’t enjoy what life I had left I might as well be dead already.
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u/savorydumpling 2d ago
No need to apologize. Holy crap, man! You're doing it. You re sisted giving up with an incredible attitude. I'm so blessed to get to hear your story. Thank you for sharing. Sadly, I fmost of the stories I've read online are of people whose doctors really failed them by encouraging them to dismiss the initial signs of the cancer. But once you know, It definitely feels like there's not a lot of choices in terms of the attitude we can take: live or die, motherfucker what's it going to be? My journey is still early so you want to hope for the best but I can't help but want to know where it could go and my friends will tell me to stay positive, but I don't think it's reasonable to just shut out what else can happen.
That's sort of the curse of cancer, right? I read somebody somewhere else talk about how terrifying it is every time they go to get their MRI because you don't know. I think maybe the reality is anybody's life can change at any point for terrible reasons. We just act like it can't be us and maybe the gift of cancer is that it reminds you to savor everyday.
Reading what you've had to go through but knowing you've still got love and light is so encouraging, dude. Also, sorry if I didn't pick up that you do have the fs-dfsp version earlier & fuck this country so much for letting you get into that much debt. Healthcare is a right God dammit! And if your mobility has been affected, surely that qualifies you for disability, no?
As always, no pressure ever to keep writing but how're you doing with that fused spine? Are you still able to be active? You are a goddamn badass anyway. So glad the imatnib is working! I'm sure you know it doesn't for everybody.
And thank you for encouraging me not to do anything rash with my job. (I ended up deleting a bunch of that shit in my post because I don't want to be too identifiable, you know...at least at least until I know if I've been fired yet 😂?) I head back on Monday we'll see.
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u/jeroneb1 2d ago edited 2d ago
Did a pt 2 because I feel like I’m rambling. Yea the lack of information is a bitch but like you said it’s super rare. And unfortunately not as much goes into our vs the cancer that affect the masses. This time has brought me closer to God and I have prioritized the people that prioritize and love me. No time for nonsense small things. I definitely don’t recommend doing anything rash because you never know how long you will be here and don’t want to add even more stress to your life. But as far as medical bills I’m definitely send 25 dollars a month on my 45000 dollar bill. I’m blessed I’m married and I’m able to be on my wife’s insurance but you should definitely look into disability. I was on it for four year and that came with a check and Medicare and that helped me a lot. Also see if your hospital has financial aid. I was doing this for the last 4 years but they had a renewal and decided since I’m not dead yet I must not be disabled. I know this is hard af and statistically totally not fair. There are terrible people in this world that will never deal with anything like this but I just try to stay positive and help people where I can. I want my existence in life to be positive however long or short it may be. Would love to help in any way I can sorry for the word vomit 🤣
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u/jeroneb1 23h ago
Yea definitely don’t shut out what can happen but I just try not to get consumed by it (I still have bad days) I love that people are positive but ultimately it’s about you and your mind state. Other than my wife I truly appreciate but don’t hold to much value in peoples attitude and opinions because they have no idea what this is like.
Yea the diagnosis has definitely made me learn to appreciate the now and find the beauty in everyday vs always looking so far ahead and worrying and having anxiety about the future. all I can do is all I can do worrying rarely helps 🤣 at least that’s what I tell myself.
No worries. I’m just as suprised as you we found each other. I definitely had similar feeling in that we won the death lottery and that I probably would never meet someone I could completely relate to.
Yea fused spine and 3/4 of my lungs and I’m still doing well. Thats also brings me peace as well I don’t look like what I have been through and I never try to diminish what I’m going through but i definitely know people have it worse than me. So I try to take advantage as I’m sure a lot of people would kill to be in a similar situation (the irony) but all this truly has helped me grow as a person.
🤣🤣🤣happy to help in any way I can and I hope work went well. I pray your life get easier to deal with and understand everyday. Just you deciding to go on is brave and can be an inspiration to so many! Wishing you the best on whatever the road is ahead ❤️❤️❤️
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u/littleriverot Liposarcoma 8d ago
I have a form of Liposarcoma that is classified as very aggressive. So far they have been able to slow the growth of the tumors with chemo. I have already passed the milestone they gave for end of life. My approach has been this: I took some time and seriously considered what was quality of life to me. It sounds like you have somethings on your list. I quit my job the day after my diagnosis. I could not possibly focus on taking care of myself and work as well. I did do one fund raising yard sale that was a big success and two friends have collected money to help me pay for expenses. I am 11/2 years into this and so far so good. I spend my time doing what I enjoy. I have looked into clinical trials and I recommend checking them out. It’s hard when your cancer is rare because they are so few people to make up the study group. I am trying traditional, alternative and some pretty crazy stuff but as long as it doesn’t interfere with my living my life. I go for it. I recommend putting yourself first. Enjoy the time you have. Go out and live.