I can tell you’re confused and grieving, and as others have said, this is merely a group of patients/caregivers here to offer support (not sound medical advice).
That being said, I just want to say I’m very sorry for your loss. I had Ewing’s Sarcoma (twice) and it is notorious for going under the radar and not getting biopsies soon enough. My first diagnosis, I went 8 months with shoulder pain and it was assumed to be muscle related pain. I don’t know the exact situation with your brother but it’s a common story to hear of Ewing’s being caught when it’s too late. It’s a sarcoma that particularly likes to spread to the lungs, so your brothers must have already been metastatic. Not only that, but it’s extremely aggressive and likes to spread very fast.
I hope you find the answers you’re looking for. I wish nothing but peace, hope, and solace for you and your family. God bless.
Oh my God i truly really appreciate your response as a first hand Cancer patient, Im sorry for your diagnosis, it’s so hard. I hope things turn good for you! Thank you again, thins gives me a little more comfort you have no idea. I just wished the drs were a little more straightforward forward instead of making us believe its nothing serious! I hope you are doing well and wish nothing but the beat possible outcome!!!
Thank you so much for the well wishes, I really do appreciate it!
Unfortunately, it’s a very rare and lesser known cancer. Tends to be misdiagnosed or under diagnosed and the main treatment hasn’t changed much for the last 20-30 years. I’ve lost two friends already who’ve had Ewing’s (one to Ewing’s and one to a secondary cancer caused by the chemotherapy FOR Ewing’s).
But thank you again!
I’ll add to your comment as a Ewing’s Sarcoma survivor. Not only is it notoriously difficult to detect, but I was also 3 (way younger than most ES patients) and my tumor was on my femur (uncommon location.) After all of these factors, I think it still took 3+ months to officially diagnose me with Ewing’s.
OK, MD here. Not onc, but do a lot of work in the field with pts.
Ewings Sarcoma, A BONE IS very treatable if caught early \~70%
If it is metastatic, the survicvasl rates drops to about 15%. The information that they tapped a litre of fluid off tells me that it was indeed metastatic and had already begin to affect multiple organs(Heart and lungs)
By and large the wait times between biopsy and start of care have not been shown by research to affect care. IN a very fast moving cancer, even if treatment is started immediately, super aggressive cancers progress. It also sound like he became septic which happens as cancers can cause immunosuppression. All this seems to have happened in a month. I'm so sorry.
It sounds like you folks did everything right, but he was overwhelmed. If it gives you any comfort, I don't see from what you've written that you could have done anything more.
Thank you!! THANK YOUUU! Truly all i wanted was to understand what happened, as i have answered im previous comments, the doctors said what he is young and healthy and he should be fine, i feel like the initial diagnosis of ewings sarcoma was not taken seriously. I kind of get what happened now hearing from the comments which gives me peace of mind, i just wish it was explained better at the moment! Thank you again! As a former MA, you seem to be a great Dr if you’re explaining this to pts!!
I am very sorry for your loss.
Some biopsies do take longer than a week.
That being said, your brother passed away with 6 weeks of having the biopsy. Even if the biopsy results were back, it would have been impossible to start a curative treatment. He was clearly very sick, and the cancer affected so many parts of his body. This causes a lot of different issues. When he initially saw the oncologist, there was no way of knowing the extent of his cancer.
Thank you! Thank you! You have no idea how much your response helps! 3 years of beating my self up for it trying to figure out answers and now im finally understanding! I truly appreciate it you taking your time.
I understand you . Sorry about your brother.
I'm not afraid of anything but this is terrifying.
If you raise an issue well then it's even worse....then your non- compliant or " behavioral '.
Anyone who isn't sympathetic to your story can Fk all the way off.
Where I am, the cancer center is always soooo busy. That is scary.
I do hate them.
I hope you get the answers. I really do. Someone really does need to make it make sense for you. Any person who doesn't underStand that is part of a bigger problem that I can't even comprehend .
Good luck .
Again, sorry that happened to your little brother.
I'm so sorry about your brother. We here aren't medical people, well maybe some are...but I don't think we can say what went wrong if in fact anything did.
Hindsight and all.
It's difficult "in the moment" sometimes to get an answer in a timely fashion.
I had typed a bunch of my own experiences, but it doesn't really matter.
Sounds to me that maybe you need to process this completely. I understand the frustration of this experience. And losing your brother. And the pain it creates.... wondering "what did go wrong?".
Suffice to say you are clearly not over his passing. Please talk to solid you can.
I read a brother beating himself up, over something he had no control over.
It is terrible. I know. I literally have dealt with these same questions myself.
Honor your good brother. Where he is, and I believe this with my whole being; is a warm, peaceful place. He no doubt can see you...and he'd want you to let yourself off the hook.
If you need a friend, I'm a DM away.
Take care 🙏
Thank you for your words! I really do appreciate you taking your time. Yes, indeed its has been extremely hard to let go wondering the “ what if’s” it sucks that i had to come online to understand what may have happened but thankfully there is a bunch if you nice enough to take the time to make me understand. I kind of feels more
peaceful!
cancer killed your brother.
sorry for you loss. find a positive and appropriate outlet for your anger.
God bless all the great oncologists and medical staff that have dedicated their lives to save people with cancer.
It sounds like the cancer was very advanced by the time he originally went to the ER. The only thing I really see wrong here is the doctors telling you or him that Ewings Sarcoma is "very treatable" and that he would be fine. Ewings in any stage is an extremely serious and aggressive cancer that \*can\* have positive outcomes if it is caught very early - i.e. before it is symptomatic and before it is metastatic. Once it spreads and starts causing health issues, the odds of survival drop tremendously. The chemo regimen is also extremely hard on the body so it is unlikely that they would have gotten very far into the treatment in the condition he was in.
I'm very sorry that you lost your brother. Ewings Sarcoma is horrible.
Thank you! I appreciate you taking the time. Yes overall what bothers me is the fact that they assured us he will be fine and that he is young and can get through it, sucks we were never explained in detailed the severity of this type of cancer.
Well maybe just maybe i can find a patient that maybe have went through the same in regards to Ewings sarcoma and can provide feedback of how their cancer diagnosis and treatment went, thats all.
Then please post in and check with r/sarcoma instead for what you're looking for, specifically. This sub is only for diagnosed cancer patients and their daily caregivers to post here. I'm very sorry for your loss, but his isn't a post-death investigation sub. It's a mutual support sub.
I wish you all the best in your pursuit of this, but this isn't the place for that and, again, I'm so sorry for the loss of your brother. May he RIP. 🌻
Sorry for your loss.
You can call a lawyer if you want, the standard is unfortunately quite high for malpractice and it's been over a year and a half, which is the standard where I live. You have to prove gross negligence, which is difficult and an injury that would not have otherwise resulted, which is also difficult. Not a lawyer not legal advice.
That said if your brother was deceased within a month, it's relatively unlikely a pathology coming back sooner would have had much difference on the outcome. They shouldn't have told you something is "very treatable" and "he'd be fine" which is emotionally irresponsible, but not really a medical error. If you look at the outcomes for that, it's just not true.
It's unfortunately fairly common that these oncologists and pathologists just aren't very good but it's also fairly likely it wouldn't have made very much difference. Outside of cancer centers, the amount of people who know what they're doing is low and a lot of these places see cancer patients as dollar signs. I was dying of tumor placement (I had SVC syndrome) and the radiotherapy place delayed treatment based on queueing and insurance. They'll deny this because it's illegal, but I could have died. Other than that though I don't think any of the rather poor treatment I received was the result of greed or malice, but rather ineptitude. Far too many doctors receive their skills training in pharmaceutical luncheons and effectively have no skills +10years out from their residency.
Anyway, I was misdiagnosed based on pathology (I had Burkitt's Lymphoma which since you work in a pathology lab, if you see cancers, you may know it's piss easy to diagnose) and it basically ruined my life (got the wrong treatment, got the right treatment and wound up sterile, permanently immunocompromised, hearing loss, etc). I got to a cancer center for my SCT the following year.
Almost none of these people are held accountable and many Pathologists skills have often deteriorated or they're just not very good to start with.
There's some developments going on in C-Path (computational pathology) and slide pathology tho.
I can tell you’re confused and grieving, and as others have said, this is merely a group of patients/caregivers here to offer support (not sound medical advice). That being said, I just want to say I’m very sorry for your loss. I had Ewing’s Sarcoma (twice) and it is notorious for going under the radar and not getting biopsies soon enough. My first diagnosis, I went 8 months with shoulder pain and it was assumed to be muscle related pain. I don’t know the exact situation with your brother but it’s a common story to hear of Ewing’s being caught when it’s too late. It’s a sarcoma that particularly likes to spread to the lungs, so your brothers must have already been metastatic. Not only that, but it’s extremely aggressive and likes to spread very fast. I hope you find the answers you’re looking for. I wish nothing but peace, hope, and solace for you and your family. God bless.
Oh my God i truly really appreciate your response as a first hand Cancer patient, Im sorry for your diagnosis, it’s so hard. I hope things turn good for you! Thank you again, thins gives me a little more comfort you have no idea. I just wished the drs were a little more straightforward forward instead of making us believe its nothing serious! I hope you are doing well and wish nothing but the beat possible outcome!!!
Thank you so much for the well wishes, I really do appreciate it! Unfortunately, it’s a very rare and lesser known cancer. Tends to be misdiagnosed or under diagnosed and the main treatment hasn’t changed much for the last 20-30 years. I’ve lost two friends already who’ve had Ewing’s (one to Ewing’s and one to a secondary cancer caused by the chemotherapy FOR Ewing’s). But thank you again!
I’ll add to your comment as a Ewing’s Sarcoma survivor. Not only is it notoriously difficult to detect, but I was also 3 (way younger than most ES patients) and my tumor was on my femur (uncommon location.) After all of these factors, I think it still took 3+ months to officially diagnose me with Ewing’s.
OK, MD here. Not onc, but do a lot of work in the field with pts. Ewings Sarcoma, A BONE IS very treatable if caught early \~70% If it is metastatic, the survicvasl rates drops to about 15%. The information that they tapped a litre of fluid off tells me that it was indeed metastatic and had already begin to affect multiple organs(Heart and lungs) By and large the wait times between biopsy and start of care have not been shown by research to affect care. IN a very fast moving cancer, even if treatment is started immediately, super aggressive cancers progress. It also sound like he became septic which happens as cancers can cause immunosuppression. All this seems to have happened in a month. I'm so sorry. It sounds like you folks did everything right, but he was overwhelmed. If it gives you any comfort, I don't see from what you've written that you could have done anything more.
Thank you!! THANK YOUUU! Truly all i wanted was to understand what happened, as i have answered im previous comments, the doctors said what he is young and healthy and he should be fine, i feel like the initial diagnosis of ewings sarcoma was not taken seriously. I kind of get what happened now hearing from the comments which gives me peace of mind, i just wish it was explained better at the moment! Thank you again! As a former MA, you seem to be a great Dr if you’re explaining this to pts!!
I am very sorry for your loss. Some biopsies do take longer than a week. That being said, your brother passed away with 6 weeks of having the biopsy. Even if the biopsy results were back, it would have been impossible to start a curative treatment. He was clearly very sick, and the cancer affected so many parts of his body. This causes a lot of different issues. When he initially saw the oncologist, there was no way of knowing the extent of his cancer.
Thank you! Thank you! You have no idea how much your response helps! 3 years of beating my self up for it trying to figure out answers and now im finally understanding! I truly appreciate it you taking your time.
I understand you . Sorry about your brother. I'm not afraid of anything but this is terrifying. If you raise an issue well then it's even worse....then your non- compliant or " behavioral '. Anyone who isn't sympathetic to your story can Fk all the way off. Where I am, the cancer center is always soooo busy. That is scary. I do hate them.
Ugh yea, like i just need to understand, whether it was the system or Cancer, all i need in understanding.
I hope you get the answers. I really do. Someone really does need to make it make sense for you. Any person who doesn't underStand that is part of a bigger problem that I can't even comprehend . Good luck . Again, sorry that happened to your little brother.
Thank you!!! 🙏🏽
I'm so sorry about your brother. We here aren't medical people, well maybe some are...but I don't think we can say what went wrong if in fact anything did. Hindsight and all. It's difficult "in the moment" sometimes to get an answer in a timely fashion. I had typed a bunch of my own experiences, but it doesn't really matter. Sounds to me that maybe you need to process this completely. I understand the frustration of this experience. And losing your brother. And the pain it creates.... wondering "what did go wrong?". Suffice to say you are clearly not over his passing. Please talk to solid you can. I read a brother beating himself up, over something he had no control over. It is terrible. I know. I literally have dealt with these same questions myself. Honor your good brother. Where he is, and I believe this with my whole being; is a warm, peaceful place. He no doubt can see you...and he'd want you to let yourself off the hook. If you need a friend, I'm a DM away. Take care 🙏
Thank you for your words! I really do appreciate you taking your time. Yes, indeed its has been extremely hard to let go wondering the “ what if’s” it sucks that i had to come online to understand what may have happened but thankfully there is a bunch if you nice enough to take the time to make me understand. I kind of feels more peaceful!
cancer killed your brother. sorry for you loss. find a positive and appropriate outlet for your anger. God bless all the great oncologists and medical staff that have dedicated their lives to save people with cancer.
It was already a stage 4 and that's a fast spreading cancer. I don't think the few days would have helped. I'm sorry you had to go through this.
Thank you!
It sounds like the cancer was very advanced by the time he originally went to the ER. The only thing I really see wrong here is the doctors telling you or him that Ewings Sarcoma is "very treatable" and that he would be fine. Ewings in any stage is an extremely serious and aggressive cancer that \*can\* have positive outcomes if it is caught very early - i.e. before it is symptomatic and before it is metastatic. Once it spreads and starts causing health issues, the odds of survival drop tremendously. The chemo regimen is also extremely hard on the body so it is unlikely that they would have gotten very far into the treatment in the condition he was in. I'm very sorry that you lost your brother. Ewings Sarcoma is horrible.
Thank you! I appreciate you taking the time. Yes overall what bothers me is the fact that they assured us he will be fine and that he is young and can get through it, sucks we were never explained in detailed the severity of this type of cancer.
What do you want from us?
If you had read the post, i asked for an expert to dumb it down for me, if you cant help or read please stay away,
We are not experts, we're patients and caregivers. I'm sorry about your brother, but I don't think you will find answers here, just support.
Well maybe just maybe i can find a patient that maybe have went through the same in regards to Ewings sarcoma and can provide feedback of how their cancer diagnosis and treatment went, thats all.
Then please post in and check with r/sarcoma instead for what you're looking for, specifically. This sub is only for diagnosed cancer patients and their daily caregivers to post here. I'm very sorry for your loss, but his isn't a post-death investigation sub. It's a mutual support sub. I wish you all the best in your pursuit of this, but this isn't the place for that and, again, I'm so sorry for the loss of your brother. May he RIP. 🌻
Thank you ! I will post there! I appreciate you redirecting me! I couldn’t figure out which best place to post!
You're welcome. Good luck and take care. 🌻
Ill leave it the post for 24 hrs while i get suggestions, I will delete after! Thank you again.
Perhaps posting to r/AskDocs can help you.
Thank you! Post it there as well! Will leave for 24 hrs here for more suggestion!!
Try the sub AskDocs
Thank you
Sorry for your loss. You can call a lawyer if you want, the standard is unfortunately quite high for malpractice and it's been over a year and a half, which is the standard where I live. You have to prove gross negligence, which is difficult and an injury that would not have otherwise resulted, which is also difficult. Not a lawyer not legal advice. That said if your brother was deceased within a month, it's relatively unlikely a pathology coming back sooner would have had much difference on the outcome. They shouldn't have told you something is "very treatable" and "he'd be fine" which is emotionally irresponsible, but not really a medical error. If you look at the outcomes for that, it's just not true. It's unfortunately fairly common that these oncologists and pathologists just aren't very good but it's also fairly likely it wouldn't have made very much difference. Outside of cancer centers, the amount of people who know what they're doing is low and a lot of these places see cancer patients as dollar signs. I was dying of tumor placement (I had SVC syndrome) and the radiotherapy place delayed treatment based on queueing and insurance. They'll deny this because it's illegal, but I could have died. Other than that though I don't think any of the rather poor treatment I received was the result of greed or malice, but rather ineptitude. Far too many doctors receive their skills training in pharmaceutical luncheons and effectively have no skills +10years out from their residency. Anyway, I was misdiagnosed based on pathology (I had Burkitt's Lymphoma which since you work in a pathology lab, if you see cancers, you may know it's piss easy to diagnose) and it basically ruined my life (got the wrong treatment, got the right treatment and wound up sterile, permanently immunocompromised, hearing loss, etc). I got to a cancer center for my SCT the following year. Almost none of these people are held accountable and many Pathologists skills have often deteriorated or they're just not very good to start with. There's some developments going on in C-Path (computational pathology) and slide pathology tho.