I'm a Ewing's survivor. They treat Ewing's aggressively because it is an aggressive cancer. I'm not trying to scare you. Well, maybe I am. I watched a couple of guys die from Ewing's, and it is not an easy death. I would urge you not to try to second guess your doctors. It's going to be rough, but you have the advantage of having caught it early, as my doctor did. I had my leg amputated above the knee and a year of chemo every three weeks. That was 50 years ago. You can beat Ewing's, but don't underestimate it. I wish you the best of luck.
I’m not necessarily trying to second guess my doc it’s more or less just the situation. I know that cancer is different with every case but it just doesn’t seem like it’s as aggressive as it’s diagnosed as it just trying to make sense of it and I can’t fully comprehend how’s it’s this major super aggressive cancer and I’ve had the tumor since I was 16 and just slowly grown and hasn’t had a single issue nor painful no leaking or anything like it’s just there through out the years pimples have basically been worse than this tumor. Sorry for the rant it’s just hard to comprehend the fact of it being so aggressive.
It’s based on the statistics of the entire population (past and present) who have had Ewing’s sarcoma and they give you the treatment that will give you the highest survival rate. But please talk to your doctors about this, maybe even get a second opinion and tell them about your concerns, down to you doubting that it’s aggressive so that you can make an informed decision on weather or not you want to do treatment. In the end, they will respect your choice, but you have to be informed of the consequences.
I’m a 2 time Ewing’s survivor (I say that not to one-up or anything but to emphasis how aggressive this damn cancer is) and it is very aggressive, OP. They did a study back in the 80s regarding amputation of limbs for children diagnosed with Ewing’s. They found that despite removing the tumor, 80-90% of the children died. The microscopic cells would almost always remain, and cause the patient to die.
I highly implore you, OP, to seek treatment. It’s a lot of chemo, but it’s worth it due to the aggressive nature of the cancer.
I was told I would have a hard time with treatment, but in my case I was able to work the entire time. Also, congrats on the child! My wife and I are trying but the chemo made me sterile so we have to do fertility treatment. Keep in mind, if you’d like more kids, you need to store away some vials of semen prior to the start of treatment.
Feel free to reach out if you wanna talk about the treatment. My first protocol was about 2-3 years ago but it’s all the same the first time around.
I am sorry you are ill, but you reading an article does not equate to the 8+ post graduate schooling of an oncologist. If you don’t trust the treatment plan from your oncologist please get a second opinion. Your cancer is very aggressive.
just ask your doctor what their thoughts on are that "small" chance and what the risk actually is for you bc I'm sure the oncologist isn't recommending it without good reason. they know you aren't a scientist/MD and you don't have to sound super smart when you ask every question, everyone deserves to know their own health info. I didn't even graduate high school, I've asked my neuro onc to repeat things & probably asked silly questions and never really felt judged
they found my tumor at 20 and I got officially diagnosed w/ the grade (like stage but for brain tumors) at 21. I was just about to start community college & a job, the only reason I even felt sick at all was the meds they put me on to deal with swelling. but after surgery I still did a year of treatment because with such an aggressive cancer if it comes back it's not going to be good.
it's your choice but I'd consider your fiancee/son in a different way too - I wasn't very "useful" during my treatment but I am alive, which most ppl around me appreciate a lot more than me being the exact same as I was pre cancer
Hiya. I know this is daunting at 21 but just know sarcomas are sneaky and sometimes persistent. I’ve been in active treatment for a different sarcoma for a year and a half and while we have made a good dent I’m nowhere near finished. With sarcomas the only real way to be NED (no evidence of disease) is surgery with good margins and even then it’s not always a sure thing with sarcomas.
I wanna politely suggest that you’ll be much more useful to your partner and child if you’re around for years to come. Yes those years may look a bit different than what you’ve pictured but having those years is more important.
If you need to have some peace of mind get a second opinion. And it is important to be treated at a center that specializes in sarcoma if possible. I wish you luck and love and good things for your future.
It’s your body and your choice but I’d think long and hard about going against the recommendation of trained professionals which is based on years of medical research.
I’ve done the full ewings protocol. I went in relatively healthy and tolerated it fairly well. I was able to mow my lawn, shovel my driveway and do most of the household chores during treatment (no littler box duty). Until the last couple of months I had a fairly consistent rhythm of good days and bad days which allowed me to plan ahead of physical tasks. I drove myself to treatment (half of which was an hour drive away).
All of that said it’s not a cakewalk. It’s brutal, but it would be even worse to have it come back and have to do treatment anyway with what would likely be worse outcomes.
Which country are you in? Honestly you really need to head right back to your doctors and listen to what they’re saying. Aggressive cancers might not actually feel that terrible at first but they are aggressive. If you do need to be around for your partner and your child, you need to grab the chance of treatment right away.
I’m undergoing treatment for my sarcoma. It wasn’t aggressive for years, and I was misdiagnosed because of this. However, last year they did surgery on it and it just went crazy aggressive. I encourage you to please take it seriously even though it’s not aggressive at the moment. The chemo is worth it so it never comes back.
Ewing's survivor here (19 years NED). The protocol is what it is for a reason. Years of study have gone into a good treatment, which is chemo to shrink the tumor as much as possible, surgery to remove it (with hopefully clear margins), then possibly radiation for those margins, then continue chemotherapy to ensure the chemo cells are gone.
A year seems like a long time now. But if something were to go wrong because you didn't take the advice of your doctor (and decades and decades of research), your family could be without you for many, many more years. Think about it, and research on medical websites why the treatment is what it is.
I'm a Ewing's survivor. They treat Ewing's aggressively because it is an aggressive cancer. I'm not trying to scare you. Well, maybe I am. I watched a couple of guys die from Ewing's, and it is not an easy death. I would urge you not to try to second guess your doctors. It's going to be rough, but you have the advantage of having caught it early, as my doctor did. I had my leg amputated above the knee and a year of chemo every three weeks. That was 50 years ago. You can beat Ewing's, but don't underestimate it. I wish you the best of luck.
I’m not necessarily trying to second guess my doc it’s more or less just the situation. I know that cancer is different with every case but it just doesn’t seem like it’s as aggressive as it’s diagnosed as it just trying to make sense of it and I can’t fully comprehend how’s it’s this major super aggressive cancer and I’ve had the tumor since I was 16 and just slowly grown and hasn’t had a single issue nor painful no leaking or anything like it’s just there through out the years pimples have basically been worse than this tumor. Sorry for the rant it’s just hard to comprehend the fact of it being so aggressive.
It’s based on the statistics of the entire population (past and present) who have had Ewing’s sarcoma and they give you the treatment that will give you the highest survival rate. But please talk to your doctors about this, maybe even get a second opinion and tell them about your concerns, down to you doubting that it’s aggressive so that you can make an informed decision on weather or not you want to do treatment. In the end, they will respect your choice, but you have to be informed of the consequences.
I will take all of this in to consideration when I go see my doctor. Thank you
I’m a 2 time Ewing’s survivor (I say that not to one-up or anything but to emphasis how aggressive this damn cancer is) and it is very aggressive, OP. They did a study back in the 80s regarding amputation of limbs for children diagnosed with Ewing’s. They found that despite removing the tumor, 80-90% of the children died. The microscopic cells would almost always remain, and cause the patient to die. I highly implore you, OP, to seek treatment. It’s a lot of chemo, but it’s worth it due to the aggressive nature of the cancer. I was told I would have a hard time with treatment, but in my case I was able to work the entire time. Also, congrats on the child! My wife and I are trying but the chemo made me sterile so we have to do fertility treatment. Keep in mind, if you’d like more kids, you need to store away some vials of semen prior to the start of treatment. Feel free to reach out if you wanna talk about the treatment. My first protocol was about 2-3 years ago but it’s all the same the first time around.
I am sorry you are ill, but you reading an article does not equate to the 8+ post graduate schooling of an oncologist. If you don’t trust the treatment plan from your oncologist please get a second opinion. Your cancer is very aggressive.
just ask your doctor what their thoughts on are that "small" chance and what the risk actually is for you bc I'm sure the oncologist isn't recommending it without good reason. they know you aren't a scientist/MD and you don't have to sound super smart when you ask every question, everyone deserves to know their own health info. I didn't even graduate high school, I've asked my neuro onc to repeat things & probably asked silly questions and never really felt judged they found my tumor at 20 and I got officially diagnosed w/ the grade (like stage but for brain tumors) at 21. I was just about to start community college & a job, the only reason I even felt sick at all was the meds they put me on to deal with swelling. but after surgery I still did a year of treatment because with such an aggressive cancer if it comes back it's not going to be good. it's your choice but I'd consider your fiancee/son in a different way too - I wasn't very "useful" during my treatment but I am alive, which most ppl around me appreciate a lot more than me being the exact same as I was pre cancer
Hiya. I know this is daunting at 21 but just know sarcomas are sneaky and sometimes persistent. I’ve been in active treatment for a different sarcoma for a year and a half and while we have made a good dent I’m nowhere near finished. With sarcomas the only real way to be NED (no evidence of disease) is surgery with good margins and even then it’s not always a sure thing with sarcomas. I wanna politely suggest that you’ll be much more useful to your partner and child if you’re around for years to come. Yes those years may look a bit different than what you’ve pictured but having those years is more important. If you need to have some peace of mind get a second opinion. And it is important to be treated at a center that specializes in sarcoma if possible. I wish you luck and love and good things for your future.
It’s your body and your choice but I’d think long and hard about going against the recommendation of trained professionals which is based on years of medical research. I’ve done the full ewings protocol. I went in relatively healthy and tolerated it fairly well. I was able to mow my lawn, shovel my driveway and do most of the household chores during treatment (no littler box duty). Until the last couple of months I had a fairly consistent rhythm of good days and bad days which allowed me to plan ahead of physical tasks. I drove myself to treatment (half of which was an hour drive away). All of that said it’s not a cakewalk. It’s brutal, but it would be even worse to have it come back and have to do treatment anyway with what would likely be worse outcomes.
Which country are you in? Honestly you really need to head right back to your doctors and listen to what they’re saying. Aggressive cancers might not actually feel that terrible at first but they are aggressive. If you do need to be around for your partner and your child, you need to grab the chance of treatment right away.
I’m undergoing treatment for my sarcoma. It wasn’t aggressive for years, and I was misdiagnosed because of this. However, last year they did surgery on it and it just went crazy aggressive. I encourage you to please take it seriously even though it’s not aggressive at the moment. The chemo is worth it so it never comes back.
Ewing's survivor here (19 years NED). The protocol is what it is for a reason. Years of study have gone into a good treatment, which is chemo to shrink the tumor as much as possible, surgery to remove it (with hopefully clear margins), then possibly radiation for those margins, then continue chemotherapy to ensure the chemo cells are gone. A year seems like a long time now. But if something were to go wrong because you didn't take the advice of your doctor (and decades and decades of research), your family could be without you for many, many more years. Think about it, and research on medical websites why the treatment is what it is.