#Ewings Sarcoma

[larjb3]

So for anyone who believes the medical system is relatively simple to navigate, here is how my afternoon has gone so far:

Called my insurance for help answering 5 questions. The first question took about maybe 50ish minutes to only sort of get an answer? And that was after the agent repeated back to me, several times, saying "As I previously explained" followed by an explanation that did not answer my current question. So that took a while. Then I went on to my next questions. Two of them apparently did not make sense to the agent either (in addition to me), based on the claims, and so they had to go talk to another department while also transferring me to another different department. They also were confused by another one of my previously appealed claims, and so they had to do their own digging as to what was going on. This entire call lasted just over 1 hour 40 minutes.

THEN I got to call ANOTHER number for a different hospital service because my account online wasn't showing a balance, but the letters I have received said I do have a balance. The agent who answered the phone for this call also didn't know why my balance was not showing online. This question got squared away pretty quickly, running just over 11 minutes in call time.

So now think of this: I am a (reasonably) well-educated person, with a PsyD in Clinical Psychology, and have been closely intertwined with the medical system since 2017 when I finally got one of my diagnoses. I have, in recent years, been even more intertwined with the medical system, with applying for Medicaid at one point, managing which doctors I see due to them actually being in-network with my various insurance providers through the years (not sure any of you notice, but finding an in-network provider, ESPECIALLY when on Medicaid, is extremely difficult), managing various prescription costs, talking to insurance as to why certain medications are suddenly no longer covered, advocating for myself when meeting with different providers (which they absolutely do not like but it 100% is necessary), calling insurance when something doesn't make sense on a claim (e.g., why a service, that was not specified, is suddenly not covered under an in-network provider), finding the right department to contact for insurance, trying to send messages with insurance and getting answers that pretty much say nothing with regard to answering my actual question (which then results in having to call insurance, which is not really all that fun), and there's probably more that I'm missing.

I'm also a relatively privileged individual, with a (mostly) stable wi-fi connection, a phone that can be easily charged and is currently connected, and a way to jot down notes both before and after calls (before: what questions I have; after: what the agent(s) said regarding my questions).

Now think about those in poverty. Do I have the most money? No, but I have a stable place to live, food, and water, and I have support from others (including you all!) who have helped me tremendously through financial support. But do those in poverty often have those things? Not always. Then put on top of trying to fend for basic survival necessities (which should probably be a pretty high priority) the medical system. This includes insurance (or lack thereof) and, if someone has it, paying consistently for it. This includes paying out-of-pocket costs with probably minimal money. This includes somehow getting to appointments on time with methods of transportation that may not be the most reliable, or they may cost a lot of money. This includes picking up and paying for prescriptions on time. This includes (if at all possible) communicating with one's insurance regarding claims that may not make sense. THEN we add on possible kids and have all the same barriers previously mentioned. THEN we have the possibility of someone having a job (if they're lucky enough to hold one), while managing medical things for both themselves, and if they have them, their kids. If they don't have a job, then we're looking at figuring out how to get on disability or SSI (both of which are TREMENDOUSLY difficult and tedious to get on and takes months to years to actually successfully do it). Now we're looking at if this person even has an advocate or case worker to help them. If they don't, or don't know how to get set up with one (because actually knowing what services you're entitled to, especially with different insurances, is exceedingly confusing), then they're on their own trying to navigate this vast landscape of things to manage. Oh, and we also have to consider that if someone IS on Medicaid or disability, they can only work a certain amount and take in a certain amount or else they lose their coverage. I'm not entirely sure the number of hours one is allowed to work on disability, but I want to say maybe around 15/week? (If someone actually knows this number please reach out to me and let me know!)

So we have all this mess. And think, I spent just under 2 hours on the phone with various insurance and medical providers today, but someone who is super struggling and under-privileged likely doesn't have the 2 hours needed to whatever questions they may have. Which can unfortunately result in frustration, hang-ups, and not getting an answer that can be understood in layman's terms which can result in more frustration and potentially just giving up on advocating for oneself.

It's a mess, and there are so many layers that are not discussed or even thought about by so many different people. I feel as though this needs to be said and at least somewhat recognized by others, potentially to help provide compassion to those so closely intertwined in the medical system.

[larjb3]

It's even better when you have fibro and cancer and no physician thinks it's in their jurisdiction to treat your pain "because it's not cancer related or a side effect of chemo" and to let them know if you get any cancer related symptoms even though certain pains did not get you to disabled status until after starting chemo and then other physicians just like to tell you it's just your fibro getting worse or they don't want to do anything in case it interferes with chemo

Fibromyalgia is such a stupid condition because literally every symptom is also a symptom of something that could kill you so you go to the doctor or Google your symptoms and you’re like “am I dying?” and they’re like “no it’s just your Ouch I Hurt All Over Disease again”

[howlsmovingmind]

Cancer is a weird thing.

That sounds crazy when you don’t have cancer because duh, cancer is a weird thing

But having cancer (especially when it’s likely going to kill you sooner rather than later) makes you feel a little bit like you’re just biding your time until you eventually fall asleep and go to bed. That heavy eyed sleep, where you feel like it’s the most natural thing in the world.

I talk about dying and how I would want my body to be taken care of, and people outside of my family get freaked out. They talk like there’s no chance I don’t pull through and that it’s my destiny to live. And the crazy thing about this is that there is a small chance that I don’t die.

But I have a feeling that’s not my story.

You ever just get a feeling about how something will go? It’s that.

I read “The Fault in Our Stars” the first time I was diagnosed. I could relate to Hazel, the way people stare at you, and the weird incomplete acceptance of death. I was always curious if my story would mirror that of Augustus.

“Do I die at the end?”

I never realized how uncommon that line of thought was until I told a friend of mine that I kept wondering if I die at the end.

“I can’t imagine what goes through your head most days”

He believes that I survive long enough to die of old age or a freak accident. Most do.

But my Mother looks at me and I know that she sees what I see: a sick kid. Maybe one that doesn’t recover. And I know it in the way she kisses my forehead and the way she holds my hand.

I know death like an old friend. Familiar and comfortable. I know I’ll sleep well in their hands. The same way I sleep when my mother holds me.

To better skin,

Howl

[surgicaloncology]

Specialty Surgical Oncology Hospital and Research Centre

Description- Specialty Surgical Oncology is exactly as the name suggests, it is one of the top cancer hospitals with a leading group of specialist cancer surgeons with vast experience in highly focused areas of cancer surgery, who have joined together to provide the best of their collective expertise to patients battling this difficult disease.

Address- Silver Point, 6th Floor, Lal Bahadur Shastri Rd, Kasturi Park, Maneklal Estate, Ghatkopar West, Mumbai, Maharashtra, 400086.

Phone/Mobile Number- 8268880185 Website URL-https://specialtysurgicaloncology.com/

[barringtonishigh]

Adding to this, actually, a little about me. Hi, I'm Barrett. I'm about to turn 17 years old. I'm a completely normal teenager. Well, uh, autism aside/hj. I spent most of my childhood completely average and healthy. When I was fifteen, though, I started getting pain in my left foot, in the space between my big toe and second toe. It started fairly normal, so I just assumed it was from walking a bit too much. But throughout that year it just kept getting worse. I went to the doctor, who shook me off and told me to get new shoes. I tried so many different new shoes but the pain just kept getting worse. By the time I was almost sixteen it was completely debilitating. I couldn't make it through a day of school without having to come home early due to how badly I hurt. I was on pain medicine and even with the fairly high dose the doctor put me on, I still was in so much pain. It had started to hurt in my shoulder as well. We went back to the doctor, and he tried to diagnose me with plantar fasciitis, but I had already researched that and told him that it couldn't possibly be that. I begged for an x-ray, and he finally ordered one. I had it done, and was told that there was a mass in my foot. I was sent for a ct scan, before being sent to an orthopedic surgeon for examination. While waiting for that doctors appointment, I was on crutches from how bad my foot was hurting. I fell while using those crutches and ended up breaking my left shoulder, the one that had been hurting. It was an insanely awful break according to the ER doctor. After that I was also given a PET scan. We finally went up for the surgeon to biopsy my foot, and a few days later, we were told the worst news I have ever heard, I had a rare pediatric cancer called Ewings Sarcoma. At this point, it had spread to my left shoulder (causing the break), my thighs, and my lungs. I went through 14 rounds of chemo which caused so many awful symptoms such as sores in my G.I tract (which is some of the worst pain I have ever felt in my life, and I have a pretty high pain tolerance), nausea, fatigue, and of course, hair loss. I went through radiation twice, once to my shoulder/foot, and thigh, and once for my lungs. I was then given another bone marrow biopsy (which they had also done around the time of the pet scan), and was declared to be in remission. I am insanely lucky to be in remission, but that doesn't mean my journey is over. I try to spread awareness as much as I can, because every child deserves to live cancer free. Only four percent of funding from the NCI goes to pediatric cancer patients. Four percent. We are worth so much more than four. Please donate if you can.

Childhood cancer awareness is incredibly important to me!! A very close friend has recently gone into remission!! This experience has drawn my attention to how little funding and recognition childhood cancer receives!! (Especially for rare cancer types like Sarcoma)

1 in every 285 children will develop cancer before the age of 20, 47 of those children will be diagnosed today, those 47 families will spend over 40% of their annual income on supporting their child. Tomorrow another 47 children will need your help and funding.

According to the Children’s Cancer Research Fund:

Childhood cancer remains the most common cause of death by disease among children in the U.S.

The amount of funding that goes to childhood cancer research continues to pale in comparison to the funds available for research into adult cancers. Current cancer research funding from the federal government, dedicates funding to childhood cancer research that is in the single digits.

I believe that these numbers can and should change. And that you can help! In the notes have I will be providing links to resources for helping children with cancer in your community, as well as links to donate directly to funding childhood cancer research and relief. Remember that you can have positive change in your community and in this world.

Ways To Aid:

Remember that you have the power to reach out and help your community! Organize. Support. Reach out and find opportunities to volunteer! Make the world a better place!!

[letterstotommy]

Longing for easy days.

Lately I've been thinking about all the days over the past sixteen years that have gone by mostly uneventful. Days defined by a relative ease and calm, spending time together or with our extended family and friends. There have been a fair share of hard days, no doubt. But we always found more easy days.

As you've gone through high school, life was evolving in a simple, beautiful way. You've embraced many roles in your young adult era: a gifted athlete. Dedicated friend. Supportive teammate. Loving boyfriend. Curious student. Ambitious human. Perfect son.

I wish I had the wisdom I have now to appreciate the easy days more when we had them, watching you take on these new roles and enjoy the simplicity of the teenage years. I hate that it takes a cancer diagnosis to make someone deeply grateful for simpler times. These days will look different for us in the future, but I know there will be more. It's possible even today will be a lot like one of those simple days. I'll appreciate every second of it.

This experience will change all of us forever. It's a heavy thought to hold. I carry it with me at all times–my body feels heavier since we received your diagnosis on September 26. Every day I plead with someone–I'm not even sure who–to give me the cancer instead. A negative thought spiral is never too far away for me. I've felt anger, sadness, confusion, panic, all of these words failing to capture the magnitude of what's happening inside. And then I ask you how you're feeling, and the answer is often simple: there's no choice. This is happening. You have to move forward and get through it.

This simple thought is grounding for me. I can, and do, crave every detail about this disease: treatment options, the best doctors in the world, the latest research discoveries and groundbreaking treatments, cutting-edge surgical procedures, risks and probabilities... and very little puts me at ease. There is no understanding of how young adults like you get Ewings sarcoma. It's simple bad luck. There is not yet a "holy grail" treatment, to use the words of a doctor at Mayo Clinic, that will destroy the genetic fusion that causes this. You had a .0001% chance of getting this cancer, so what good is a 4-25% chance of any other possibility?

We now live in an atmosphere of unknowns, a space where I will never find the information I really seek. There is not much to find that an expert won't give me when I need it. A cruel reality for a researcher at heart, but a new world I have to find some peace living in. If it weren't for you here now, this would be a lot harder.

It's not fair to expect you to support your loved ones through this challenging time. This is your experience. And yet you are always, always quick to offer the reassuring wisdom your team needs as we struggle with the challenge you have to face. I hope you won't hesitate to demand the love and support you need in the hardest moments. I see your bravery every day, I'm in constant awe of the resilience you bring to your fight. You make it look easy, even as you face impossible decisions most adults will never have to make.

Nothing with cancer is easy. Every aspect of life changes in an instant. Your physical body is challenged, and your mental and emotional strength even more so. Navigating the world is suddenly filled with risks and dangers. You approach it all so simply: "I know. I'll be careful."

You've built the strongest foundation you could possibly have up to this point, and now it all makes sense. The hard days you endured before prepared you for your cancer battle. It will be difficult for me to ever stop wishing you didn't have to do this, even though I know that you will. You'll bring forward your calm courage to one of the greatest challenges life can offer someone, and together, we'll enjoy so many more easy days. As I write this, I recognize we are enjoying easier moments among harder ones. The conversation about cancer is often hard and heavy. The way you are navigating this right now is different. You are not a sick child to us. You are Tommy, living your wonderful life just a bit differently, enjoying all that you can, enduring the challenges as they come. I admire you even more than I did before.

[crossborderscare]

The diagnosis of Ewing sarcoma in starts with the detection of various symptoms, such as pain at the tumor site and swelling.

[bommagoni]

Ewing Sarcoma Drugs Market Size, Share, Analysis and overview

[somosprojetoamigos]

O que é sarcoma de Ewing?

O sarcoma de Ewing é um tumor maligno que afeta principalmente crianças, adolescentes e jovens adultos, com pico de incidência em torno dos 15 anos, de acordo com o Inca (Instituto Nacional de Câncer). O mais comum é que o sarcoma ocorra nos ossos e, em ordem de frequência, se dá nas extremidades inferiores, no quadril, nas coxas, no tórax, na extremidade superior, na coluna, na mão e no crânio.…

[thescoopess]

Leah Smith, TikToker Who Documented Rare Cancer Passed Away March 11

PHOTO: Leah Smith/TikTok The 22-year-old celebrity on TikTok, who documented her uncommon cancer diagnosis on the internet, passed away. Leah Smith, a resident of Woolton, Merseyside, passed away on Monday due to Ewing’s Sarcoma, a condition that typically affects youth. Over 500,000 individuals tracked Ms. Smith’s journey on TikTok, where she shared daily updates on her illness. Her partner…

[larjb3]

Prefacing this by saying that I have chronic pain, which has existed for most - if not all - of my life (yes even when I was a child). I also currently have cancer and am actively going through chemo treatments.

ANYWAYS

My boyfriend today told me (roughly) that I need to stop doing so much during the day (I was holding 2 cat beds and some other stuff that needed to be washed and told him I needed to go to CVS for meds after I started laundry and then I wanted to come home and workout). I was confused, because I didn't feel like it was all that much, and I only had 2 clients + supervision earlier. He said that the day after I do "too much" I'm usually in bed the next day for most of it, or my pain levels are higher. I nodded and said "yes," waiting for actual things that happen after I do "too much." He basically just repeated what he said in different ways when I continued to give him a blank expression. I kept telling him that that's normal for me. He didn't seem to believe me. I told him he hasn't previously lived with me (since when I have low energy-high pain days I usually avoid people and interactions, so he didn't previously see the effects of me doing stuff on a day but he does now since we live together). He said he's lived with me for 8 months now. I said again that that's pretty normal for me and is a pretty common pattern, and that the exhaustion I feel on the day after doing stuff lessens the more I get used to doing stuff. This means that it'll take some time for my body to acclimate to doing things, since chemo has pretty much taken so much out of me for the past 5 months. Eventually he accepted (or gave up with trying to change my mind?) when I said something along the lines of "this is normal, and it's only 'too much' when I cause a flare-up, which I haven't done yet."

I also don't think he actually knows what a real flare-up (fibro) looks like for me. I think he's only heard of it and what it does, but I don't think he's actually *seen* one. I mean, maybe I've had one in these past 5 months since starting chemo, and maybe I just blamed it on chemo? I'm not sure, but that's also kind of besides the point.

So it's interesting to me, as someone who has lived in my body my entire lifetime and has had to navigate different energy and pain amd fatigue levels, that someone else who has lived with me for less than a year, is able to tell me what "too much" is in terms of what I can do during the day. Now it's not to say that sometimes he is absolutely correct when I do too much, and I will openly give him that. But also, this is the most steady energy I've had for multiple days on end in months, and I feel that I'm at least *sort of* pacing appropriately?

[healthcareporium]

Exploring Bone Sarcoma: Variants, Therapeutic Approaches, and Future Prospects

Bone sarcoma, a rare type of cancer, affects the bones and surrounding tissues. The condition comprises various types, including chondrosarcoma, Ewing sarcoma, and osteosarcoma, each presenting unique challenges in treatment. However, recent advancements in therapies offer hope for improved outcomes in managing bone sarcoma. Challenges Associated with Bone Sarcoma Treatment: Bone sarcoma…

[drpedi07]

Toronto Childhood Cancer Staging criteria for Ewing sarcoma Calculator

Ewing sarcoma treatment usually begins with chemotherapy and/or radiation followed by surgery to remove any remaining cancer. Treatment options for recurrent sarcoma include targeted therapy and high-dose chemotherapy with stem cell transplant.

[lazarro]

[enalfersa]

El chico de las musarañas

Ana Obregón, una de las mujeres más queridas y reconocidas de nuestro país, nos ofrece un desgarrador testimonio sobre la pérdida de su hijo Aless Lequio, tras una larga y dura enfermedad. El corazón de este libro es El chico de las musarañas, el texto que Aless empezó a escribir cuando le diagnosticaron cáncer. Un relato sincero, ácido, irónico, vibrante, con un sentido del humor único, que no…

[medicomunicare]

Le indagini sul sarcoma di Ewing: a caccia di proteine cruciali per renderle bersaglio di farmaci rivoluzionari

Il sarcoma di Ewing è un cancro delle ossa e dei tessuti molli nei bambini guidati dalla chimera EWS-ETS, più comunemente EWS-FLI1. Poiché le attuali chemioterapie citotossiche non migliorano la sopravvivenza delle persone con casi di sarcoma di Ewing metastatico o ricorrente, sono necessarie terapie mirate nuove e più efficaci. Nonostante molti tentativi, tuttavia, la terapia mirata EWS-FLI1 non…