IAmA teen with a cancer with less than 100 cases reported. AMA!

Hey! Hope your treatment isn't too unpleasant! So did it take a long time for you to be diagnosed, or was it sort of out of the blue?

I had the sarcoma for about a year before it was removed. I thought it was just a funny pimple, but nope, and I was misdiagnosed a bunch of times.

First, when I had surgery to remove it they said it was a pyogenic granuloma (I think that's what it's called in English, it isn't my first language), then they said it was a melanoma, and finally in February I was diagnosed with cutaneous Ewing's sarcoma. The sarcoma went through half the cities in my country and it ended up in France, where they found what it was.

Oh my gosh! Getting misdiagnosed is so frustrating! Best wishes to you🤍

Thanks!

Do you have a picture of the funny pimple?

Yep

https://imgur.com/a/GO30vI6

First off, I hope you beat that cancer so hard it'll have a twitch!

Now my question(s), is the school giving you any accommodations to ensure that you are getting an education despite the difficulties at hand? Have you been able to eat and get good sleep?

I basically had online school, they sent me the homework, projects, etc I had to do with classroom. The teachers did a wonderful job, ones more so than others but overall they gave me all I needed. I didn't have exams because I couldn't go to school, so they just sent me work to do.

From 2nd treatment onwards, I was just more hungry than usual because of the corticosteroids, and my sleep schedule is as usual, you have to mess me up really bad to make me not sleep. First treatment tho, I wasn't hungry and slept a bit less for the days I stayed, but since I'm doing fine.

Thanks!

Okay, what a wild coincidence. My boss just posted a notice about a fundraiser for someone she knows who has Ewing's Sarcoma. Hopefully things haven't been too bad for you. Have you met anyone else with this rare cancer?

None. Not even the "normal" version. In the hospital I'm in, most of the kids have leukemia or lymphoma, maybe myeloma.

Except for the first round, everything's going smooth, so it's all great.

Curious - I did a quick Google search and found this: https://www.aad.org/dw/dw-insights-and-inquiries/dermatopathology/make-no-bones-about-it-primary-cutaneous-ewing-sarcoma-is-for-real

Apparently there have only been three reported cases of this cancer metastasizing? Do you have a confirmed metastasis, and if not, why are you undergoing chemotherapy instead of just surgical removal?

I was stage 1-2 when it was removed. I asked my oncologist if it would be possible to not do chemo, but they said the chance of relapse is unknown, probably low, but since they don't know they just gave me chemo.

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Not really since I'm a minor, it was all up to my parents. I could technically refuse but I don't want to get in trouble or anything.

I personally tried to, since I read some are treated with only surgery, but the oncologist told me that its better to be safe, as that type of cancer likes spreading to the lungs, so even if there's only a few cells left, it could be a disaster.

All in all, I wish I had argued a bit more, but I don't regret it, as I would have done it either way probably.

I hope treatment is going well! As a hospital worker, I’m curious what things have you appreciated and what things have you not loved so much that hospital staff may do? Hope they’re treating you well!

I'm in the kids zone, so I don't know if it's the same for the adults, but from my experience they were incredibly nice and understanding, and felt like humans. You could chat with them and that made it easier to handle.

I don't have any complaints whatsoever, but I will say the food was absurdly disgusting. I had to bring my own.

Are the doctors using you as a case study since the cancer is so rare?

Hope everything goes well and you bounce back 100%.

Yes, they'll use me as a case study, even the chemo they are using is just a test, they are giving me the normal Ewing sarcoma chemo, which is kinda rough but it is what it is, since its so unknown no one knows another alternative.

Thanks!

Heya! Mostly wanted to drop by to say "good luck"; I'm heading out for college stuff soon and have no good questions on my mind.

Any particular dreams or hopes for the future? :)

Wishing ya a speedy recovery if I read correctly

Well, I want to go to university and be a forensic pathologist, and for now that's the plan and it's going pretty well, but anything medicine related is probably good as well. Thanks!

Did you want to be a forensic pathologist before your diagnosis as well, or did the diagnosis help you decide what you want to be? Have you been able to do treatment outside the hospital or have you had to be inpatient? What's the longest time you've been in there all at once? Have you ever seen the old cancelled TV show "Red Band Society"? I really enjoyed it, it's about kids/teens who are inpatients together in a hospital for a variety of reasons, one has Ewing Sarcoma, one has a heart condition, one has anorexia, one is in a coma, one has cystic fibrosis... I am probably forgetting some. It's about their relationship, but it's also kind of a comedy in a lot of ways. It's not a realistic portrayal of the illnesses or treatments but I enjoyed it. Just curious. Best wishes!

I knew I wanted to be a forensic pathologist long before treatment, I think about 3 to 4 years ago.

No, since I have IV chemo and need constant hydration, but during the one day treatment I do get to leave the hospital the same day I entered.

I haven't had any complications outside the first round of chemo, so the most I've been is 6 days for the usual treatment.

I haven't, but I'll be sure to take a look as it sounds interesting.

I'm glad six days has been the longest at a stretch. I imagine it might get boring after awhile, especially hearing about the food you're subjected to! Hospital food is always bland and weird, but with food restrictions due to allergies I'm sure it's awful. I'm glad you've been able to bring your own or get it from the cafeteria at least. I read through the comments and I'm so glad your mom works at a hospital and that it worked out so that you had surgery the same day as she talked to a surgeon about it! It is a shame that you are missing a lot of this year of school but hopefully before long you will be back to doing all the same things you always did. Yeah, check it out, it was a great show! In the first episode there's a funny scene where a cheerleader (the one with the heart condition) collapses because of her heart and all the students just pull out cell phones and record her - this is funny because when this show came out, it was only JUST becoming common to have cell phones, and especially for younger people to have them, so that scene made the show feel very cutting edge or very "in the moment" or whatever. Back then you didn't see references to the internet or to cell phones on tv in that way and so as soon as I saw that scene I felt like "oh wow, this is great, it's going to be more realistic than how most shows portray teenagers".

Anyway, if you watch it I hope you like it! There's just one season anyway, you'd get through it very fast.

That actually sound hilarious, thanks for the suggestion!

Forensic pathology? You might want to look into the JFK assassination. The "Official Narrative" is rotten "through and through"...and there are some forensic people like Dr. Wecht and Dr. Mantik...who STRONGLY disagree with the official story (on youtube, e.g.)!!! ; )

I'll be sure to check it out. Thanks!

this might be a bit morbid so I understand if you don't want to answer, but...

have you had many conversations with other kids in the hospital? I've always wondered what kinds of things you'd talk about, given the circumstances... presumably fear of death is pretty high on the list, but I could also see a situation where the kids talk about anything but dying.

I usually talk with the older kids, and we talked about our interests, played some board games, even do exercise. I actually have made a few friends in here, but most have finished their treatment already.

With the younger ones, i maybe bring them a board game or a book for their age, or talk about the things they like.

Death isnt usually the conversation I have with the other kids, I have brought it sometimes and yeah, we talk about fear and cancer recurrence mostly.

I've also have hospital roommates I talked to pass away, and seen oncologist announce that a disease is terminal, that's the worst feeling I felt in a looong while, even if it wasn't about me.

How are you feeling?

I'm feeling okay, would be better to be at home but eh. The nurses are very nice and help make it feel a little bit shorter at least.

If you’re comfortable saying, what stage is it in?

They never directly told me, but from what I understand it was stage 1, maybe 2.

If that’s the case, I’m glad you caught it early, and I wish you the best!

Thank you!

Do you know your translocation? Two genes fused to cause your cancer-most common is EWSR1-FLI1 but there’s lots of varieties. Many are Ewing. Some aren’t Ewing but are “Ewing-like”, me and some colleagues wrote a paper about those appearing in the skin.

If you have a pic of what your skin looked like when you started and your molecular results, I think you can get a head start on your career by writing your own case report. Happy to help.

-pathologist

They never told me, only thing I know it's really weird. Like, really really weird. I think it was more "ewing-like" but I don't even think the pathologists understood it fully.

I do have a pic of it, but I don't have the molecular results, I'll try to ask for them in the next appointment with the oncologist.

What's your daily diet? Is it different from ordinary meal?

The food the hospital gives me is horrendous. There's some decent things here and there but since I'm allergic to a bunch of stuff (milk protein, peaches, etc) they give me weird stuff. The most memorable is a barely cooked fish with 3 uncooked carrots, which I took a bite and ended un vomiting. It was harder than the fork I was eating with.

I usually bring my own, like pasta and salads, but sometimes I eat at the cafeteria, where some of the food is actually quite good.

How hard has it been to stay positive? How have others been trying to keep your spirits up?

At first it was hard, but after little time I just stayed positive. In treatment and all that stuff I always prefer to be neutral, to not disappoint myself, but outside, if people see that I'm fine they'll be fine too.

My family was more less the same, except for my mom, that got depressed and anxious, but she's all god now, and my friends took a bit more than them, especially my best friend. They know I'm okay, so it isn't hard now for them.

What are you most looking forward to once you're done with chemo? Have there been any specific social events or activities you've had to skip due to your diagnosis/treatment?

Wishing you a full recovery ASAP!

Definitely my hair, I didn't realize how much I loved it. I need my fluffy hair back.

I've had to skip my big school trip to Portugal which I was really excited, but oh well. Also, all the other school trips as well. And now this summer I can't really go to the beach, since the chemo gave me a bit of hyperpigmentation on the neck area. I can only go either super early or late.

Congrats on getting surgery and I hope you recover! Can you share what treatment looks like for you since you got surgery? What sorts of interventions have you had? (I.e. physical therapy, occupational therapy, chemo, etc?) What's the hardest part of the recovery?

So the usual Ewing's treatment goes chemo - surgery - chemo, but I had surgery - chemo - chemo. I had 4 round of VDC (vincristine, doxorubicin and cyclophosphamide, originally 5 rounds) which were a 2 day hospital stay (24 hour hydration) and IE (ifosfamide and etoposide) which had a 6 day hospital stay (again 24 hour hydration), which had 4 rounds.

Then, due to doxorubicin, my heart function dropped to 59%, so I was put on tablets and they removed one of the VDC chemos, and then I began post surgery, which only changed the VDC to VC, so now I have a one day hospital stay.

And before all that, I had 3 surgeries, 4 if you count the bone marrow biopsy.

One to remove the sarcoma, another as a border extension (carve out a bigger area to check for any cancer cell) and another to remove a potentially cancerous mole (which it wasn't).

What lead you to wanting it to be diagnosed? I see in another comment it was mis diagnosed a bunch of times, what tiped you off to keep getting it looked at?

So I went to another hospital, which they told me it was one thing (pyogenic granuloma) and they gave me some drops to put on it, and I had to wait a year to get it removed. They weren't in the pharmacy so my mum, that works at the hospital I'm in right now, asked a doctor about them.

He asked a photo of the sarcoma, she sent it and since he didn't have any surgeries that afternoon, I got it removed that same day, so I didn't have to wait.

Then his team examined it, discovered it was cancer and thought it was melanoma, but it wasn't upon further examination that they discovered what it really was.

So it was basically luck, if that doctor wasn't there I wouldn't even know what it really was.

Okay, alot of that makes sense, thanks for answering

But why the initiate check at the original hospital? Because it looked funny?

At first I thought It was a funny pimple or maybe a burn, but it didn't go away so I went to the hospital.

I don't know if you can post images on comments, but here is how it looked the day before I had surgery.

https://imgur.com/a/GO30vI6

First off, I'm really sorry. My partner has an extremely rare sarcoma as well. I know how hard it can be to get answers when there's very little data available. I always thought medicine was such an exact science, but this has truly shown me how little we really know.

I have a couple questions:

1. What kind of treatment do they have you on? Interested in what the first line of defense is for your particular sarcoma compared to my partner.

2. I try my best to support my partner, but I feel like I'm always doing or saying the wrong thing. What have you found to be the best support you've received during this time? Have there been times when people mean well, but their 'brand' of support just wasn't how you wanted to be supported? What could they have done differently?

Trust me when I say I'll be thinking of you. I wish you all the best, stay strong. ❤️

1. They had me on VDC/IE, the protocol for the normal Ewing's sarcoma that appears in the bone, since there wasn't even one for the cutaneous version I had. I also had surgery, which removed the tumour.

2. Listen to them, and most importantly, don't make every conversation about cancer. Treat them as you usually would. There have been times where some people just, make everything over the disease. They didn't mean it in a bad way I'm sure, but it got annoying. They could have asked at first about the stuff, then ask every once in a while how I was doing. Much better that way.

Thank you! I wish you the best for you and your partner as well!

I hope you’re doing well. Do you know Technoblade ?

I'm not 100% sure, but I think he was a Minecraft youtuber that died of cancer? I'm not sure on that and correct me if I'm wrong.

I wish all the best for you and hope you will get better soon!

As for question, (to follow the rules,- you can skip replying) - what priorities/values changed for you over time?

You really get to know the people in your life during these times, and which ones aren't the best. I haven't got a ton of friends per say, but my closest ones cared for me and everything, but a lot of people haven't talked to me since I began chemo, and some other only wanted to know to tell others about it.

And you also value more life, especially when they tell you the big announcement, but overall after time went by I don't give it much thought now.

On another note, I didn't know how much I loved my hair, I'm not letting anyone do anything with my hair ever again.

I know someone with Ewing’s sarcoma. He has to get immunotherapy every two weeks.

What is your long term treatment for this?

It was surgery with 13 rounds of IV chemo (VDC/IE). There wasn't any alternative from what they told me. After that I'll have check ups for five years, and after that I'm finished.

Hope he's doing alright!

Guessing that it was diagnosed this winter. How have you been dealing with the experience? What has been the smartest things you have heard about the situation?

I expected the worst, but it wasn't that bad, it's just really boring to be in the hospital. The first round, they gave me something to help with dizziness that had something I was allergic, so you can guess how that ended. Just, vomit after vomit.

Probably that I should be doing what I do normally, just with small changes. Some people wanted me to basically not go out of my house at all, and if I do, I had to wear like three masks. I obviously was against that, and I convinced them it wasn't necessary to do all that.

Chemo does nuke the immune system, masks aren't a silly idea. Good to hear that it didn't suck as much as expected. What to do when the hospital is boring?

Yeah, when a place is crowded I do wear a mask, but since my inmune system is doing great in blood counts and all that even with my quite aggressive chemo, I'm comfortable not wearing a mask when there aren't lots of people.

Just seeing the same walls over and over, and there isn't much to do. The wifi isn't very good per say, so good luck playing videogames unless you use mobile data, but I only have 2Gb, so.. yeah. There's a tv, but the channels are definitely not tailored for older kids.

I had a buddy growing up who had Ewings Sarcoma at a very young age (I believe 4) and came back in our early 20s. He's the only person I've ever heard of who had it, and yours is an even rarer subset?! Is it ever weird to think about the statistics of it all? Does it make you feel better or worse about statistics in general (ie comforting or not comforting).

Hope you're feeling alright and have a speedy recovery! What are you doing to stay sane currently and keep yourself busy?

From what I've been told, its a lot rarer, but more curable. Im interested in knowing them, and it makes me feel better, since I got somewhat "lucky" and unless the cancer has spread it's highly curable, since it's very localized and on the skin, so it's easier to catch it and remove it.

Are upset that you weren't the coveted 100th?

Jokes aside, what's your favourite snack and hobby?

Probably sunflower seeds, but watermelon is a close second. Anything spicy also gets the job done.

I like drawing, listening and discovering new music, videogames and hanging out with friends. I'm also interested in cooking, but I'm still learning.

23 years in a kitchen as a red seal chef... My advise if you are serious about cooking is to be the absolute best and don't put up with shitty owners or bosses, plenty of places to work for shit wages. Unless you are absolutely the best chef for miles don't expect good money. It's the lowest paid trade on the planet.

HOWEVER, I've learned more in the kitchen about myself than I could anywhere else (Anthony bourdain), and that holds true into my 40's.

Spicy eh... Look up "lil' nitro" gummy bear. That's a mistake I will only make once!

Don't worry, I just want to learn for myself, so I can be self sufficient and cook for others and myself. But thanks for the advice, since I want to at least be a good home cook.

I'll definitely look up those, they seem interesting.

Do you have a bucket list of things you want to do after you beat cancer? If so, what does it include?

It's a bit long but these are the most important

-go to Disney land or something

-go to Coachella or tomorrow land

-study more, since the career I want definitely need it

-have a bedroom makeover (in the works)

-learn to draw digitally

-get a good amount of money

-maybe write a book if I'm feeling it

What things have people close to you done that you thought were most pleasant/helpful for you? What things were not as helpful as people intended?

Just talking to me, it usually helps a lot even if it's not much. Also, my friends telling me what they are doing in school so at least I'm updated of news. Other than that, just asking how I'm doing is enough for me.

I like making dark jokes about me and everything going on, and some people that haven't experienced anything similar get offended, for them and for me. I definitely don't want people offended about a bald joke, but come on.

What do you want to do with your life when you beat this?

I also wanted to let you know you can do this. Stay positive, listen to absolutely everything your oncologist tells you, and there's a good chance you're going to be ok. There's never been a better time in history to get cancer.

-a guy who just beat stage 3 cancer

Probably continue my life how it was before, since I got cancer after I had finally gotten a "glow up". I'll probably study more and be more careful about weird symptoms or stuff on my body. But I just want everything to be more less how it was before, since I really liked it that way.

And congrats on beating your cancer! I have 4 more rounds (3 if you count this one), so I'm close to finishing it all finally.

Where do you live? Do you have the money for all the medical costs, or there is public health there?

I live in Spain, so there's public health, and you basically pay for it with your taxes. So, it's basically free.

what peoples are willing to give you when they know that you have cancer ?

Do you mean diet or socially? Because I don't eat any different from what I ate before. And socially, Im just more careful about the sun, so when I go out, we make the plans accordingly.

socially but in the sense of what you get from other people, will people treat you differently when they know that you have cancer by being extra generous with you ?

The people I knew already just continued treating me how they used to, but strangers literally give you gifts for existing. It's honestly quite nice, and you get to skip queues also.

How is the pain? Can you hold up without painkillers?🥺

I don't get any pain. Maybe some jaw pains here and there, but it's just a minor inconvenience.

I hope you kick this cancers ass. My wife was on rotating cycles with 21 days in between each. Did they start you off with doxorubicin already?

I did 4 rounds of doxorubicin (once every month, alternating every 2 weeks with another chemo cocktail), originally 5, but my heart's function dropped to 59%, so they replaced one of the doxorubicin rounds for one with none of it. So I've already finished with it, and it for sure was the worst of the chemo cocktails.

Did the treatment lead to any unpleasant symptoms? BTW...in case you have any recurrence, you might want to learn about an "ALTERNATIVE" approach to cancer, the "Metabolic Model," which recent research has strongly validated. Just do a search for this...or for Dr. Otto Warburg...and Dr. Thomas Seyfried...to "Blow your MIND!!!"

The only one was nausea, but my body ended up getting used to it, so it stopped after the 3rd or 4th round. Some hyperpigmentation on the skin and hair loss. My chance of recurrence is very low, but if it ever happens, I'll be sure to check it out!

Did you take the covid shot? Or how many?

I took it when it first came out, I took 2, but since then I haven't had any. It was a year or two ago more less.