r/sarcoma • u/lemonsmum • 11d ago
New Diagnosis Just diagnosed
Hi friends. So I just found out a couple of days ago that I have cancer. They are saying they are treating it as a low grade sarcoma found on my right chest wall. It was first noticed and in 2018. I won’t be able to see my oncologist till October because of insurance.
The specific for it all is Ewsr1::pou5f1 And my Dr kept saying it’s a unique case. I’m just wondering if anyone has ever gone through something like this or knows of someone. My head is just running and not in the best way.
5
u/Fransaskois 11d ago
I’m very sorry to hear you’re going through this and welcome to this unfortunate club. I can definitely relate in that you feel like you’re spiraling. Everything will feel like it’s a going wayyyyy too slow but also wayyyy too fast, and you desperately want to jump to the next steps to get rid of this monster. Trust the process, but advocate for yourself. I understand insurance is preventing you from seeing your oncologist sooner, so simply focus on what’s in your control. Get yourself healthy for what may be on your future path. I’m currently undergoing treatment for stage 4 high grade myxofibrosarcoma where I found out a month ago that my cancer showed up in my lung and on my chest wall. It’s scary, but I’m just trying to be active and stay as healthy as possible before I have my surgery in a couple months. We’re all in this together and good luck to you.
4
u/ConversationOne9212 9d ago
Hi there. My dad had sarcoma in his leg. We learned a lot of things along the way. My greatest advice is to do everything right the first time as it’s a tricky cancer. That is, throw everything at it. His mistake was he didn’t do surgery right the first time. He wasn’t put under and the margins weren’t good. He had a few round of surgeries and finally ended up doing an amputation. Some nodules were newly found in his lungs. He’ll be undergoing a VAT surgery very soon that is considered minimally invasive. We’re still grateful and trust God that he will make it through! Mostly prepare your heart as it can be a rollercoaster. Feel free to DM me if you need more information.
2
u/Successful_Hope4103 Synovial 9d ago
So sorry to hear this . In Pennsylvania where I’m from and all the surrounding states see people within 48 hrs. after getting a cancer diagnosis, no matter what kind of insurance you have ! I can’t believe this. Where are you from ? Fox Chase cancer center in Philadelphia guarantees a next day visit which I took advantage of.
1
2
u/Swimming_Anything_27 8d ago
In 2018, did you undergo treatment and now have you returned? Where are you from and how old are you? My husband had Ewing's sarcoma that started in his ribs, he has been undergoing treatment for 2 years
2
u/lemonsmum 8d ago
No I’ve never had any type of treatment. I am in Phoenix and Im 33. I wish I would’ve cared more about health things back then.
1
u/Swimming_Anything_27 8d ago
I wish you peace of mind in this process and lots of strength. Never lose faith
2
u/Brandyland23 8d ago
Hey there, I had a sarcoma tumor The size of a football removed in May 2023. They just discovered last week that my sarcoma has come back and appears to be more aggressive than the first round so they plan on attacking it with chemo-surgery-radiation. What I will tell you is that I went to Sedona before my 2023 February diagnosis and funny thing I just came back from Sedona last month because it feels like my safe place. I live in San Diego so I try to take advantage of the paradise 7 hours away. I noticed you were in Phoenix, if you do have time or the resources I would suggest you take some of that away on a trip to reflect on life and appreciate what gift it has given you. Just stay strong mentally and ask questions and scream for help when you need it. You can be afraid but please try to be as fearless in the fact that you can get through this. It will be really hard at times but you will learn things about yourself and meet many people along the way.
2
u/ComprehensiveChain13 2d ago
hello, something similar happened to me in october. I got misdiagnosed and found out I had a low grade sarcoma on the back on my right shoulder. it was so big it was almost touching my ribs. I had to wait weeks because of insurance to see an actual good doctor and get tests i needed. I ended up having to get new insurance and self referring to Dana Farber there someone finally took it seriously and i had it removed in february. my doctors were actually amazing. but i know exactly what it feels like to be going crazy. you could see mine through clothes and i was so anxious. Make sure you have people around you taking it seriously and never settle for subpar care. It’ll all work out 🫶
6
u/jay-aay-ess-ohh-enn 11d ago
Welcome to the club.
If you don't have any specific questions, try reading through previous posts in this sub.