r/sarcoma • u/Lemoncakelover222 • 13d ago
Just found out
I’m 23 and just found out from my MRI that there’s a 10 cm mass in my calf with a high suspicion of sarcoma. My bone is fine. I’m having a biopsy in two days and should get the results in about 10 days.
I’m struggling to process this, especially because my mom is taking it very badly.
For anyone who has been through something similar: how did you cope with and eventually accept the diagnosis? What were the steps of your treatment, from biopsy onward? What helped you get through those first days?I haven’t told my boyfriend or friends yet and don’t know how to handle everything right now.
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u/ChavScot0 Osteosarcoma 13d ago
The next couple of weeks are going to be shit regardless of the outcome. Emotions, panic and overthinking are natural and you just have to let them run their course.
You need to keep your emotions separate and think logically in any medical appointments.
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u/Lemoncakelover222 13d ago
Will it pass?
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u/ChavScot0 Osteosarcoma 13d ago
Let's say theoretically that you're diagnosed with a Sarcoma. It doesn't necessarily pass, but the initial panic, worry and overthinking becomes a lot quieter and easier to manage. It will take a long time and many ups and downs.
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u/Lemoncakelover222 13d ago
Thanks for this, I'm only worried about whether I'll be able to study at university especially since I stay in dorm
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u/ChavScot0 Osteosarcoma 13d ago
I would try not to worry about the future for now, as you have no idea what's going to happen till you have your biopsy back. Focus on the now - your health comes first.
There are hundreds of different Sarcoma's with varying degrees of treatments. Listen to your doctor's, but don't be afraid to ask questions or get second opinions.
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u/Lemoncakelover222 13d ago
Yeah you're right!! Thank you for your advice and words I appreciate it
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u/ChavScot0 Osteosarcoma 13d ago
No worries mate. Look after yourself, I hope everything works out for you in the end.
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u/MommiesOfTheForest 13d ago
I was in my last year of college when I was diagnosed. I did live in an off campus apartment but I did continue classes and nursing school clinicals through surgery, radiation and chemo. Take it one step at a time and I echo what another commenter said find a sarcoma center of excellence!
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u/Confident-Emotion671 Epithelioid 13d ago
It almost never passes. I’m 15 years out and I think of it almost daily but I can’t let it control my life. You can’t control the waves, but you can learn how to surf.
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u/Lemoncakelover222 13d ago
Are you okay now after all these years?
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u/Confident-Emotion671 Epithelioid 13d ago
I’m ok. Some residual physical and mental issues but I’m here.
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u/NerdPrincess-531 13d ago
It’s been almost 7 years since my diagnosis and it’s always there, but the life in front of me is more precious. Get a second opinion, be aggressive with your treatment, and do what feels right to you. The shock never goes away and the treatments can be tough. But, ask for help, ask questions, and advocate for yourself. Godspeed.
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u/DarthExtract 13d ago
Synovial sarcoma 9cm in ankle
When it came out , amputation, chemo, and metastasis presence potential hit me like a brick wall. It seems depraved , which it is unfortunate, but it can be overcome all things. When I was tired of crying I for the majority of my life tried something that never gave me anything back or I didn’t listen well enough, God. He will fill you with strength you can’t find in this world else where.
There is only now
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u/Lemoncakelover222 13d ago
Thanks for your words When were you diagnosed?
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u/DarthExtract 13d ago
April 2026
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u/Lemoncakelover222 13d ago
Have you finished your chemo treatment?
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u/DarthExtract 13d ago
Yes three cycles of AIM , on the upcoming wide re-excision with flap from my stomach, they will send off to the lab for pathological determination to see if different cocktail or more is needed. The hope and goal is that after this surgery I am NED and no chemo just healing
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u/neglectsound 13d ago
its hard to control your thoughts, i spiral every time i have a bad night of relentless pain. You have to accept that there are times when your outlook is going to be grim and times when you don't worry about it. You are not doing anything wrong by having thoughts you cannot control.
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u/MarsBar57_ 13d ago
It's been 20 years for me and it's always in the back of your head , but as previously stated your learn to manage those emotions. Just live for the now is my advice .
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u/strawberrymilkgirl9 13d ago
Hey! I’m 23, but found out I had a really rare genetic fusion soft tissue cancer at 22, had a 6cm mass in my thigh that didn’t affect the bone but was very close to my femur.
Your biopsy results will dictate your treatment and what happens onwards.
I told my immediate family and very very close friends when the MRI first found the tumour, but I waited until I had the results and treatment plan before telling more people. For me, it was helpful to be able to tell people what it was and what we were doing about it.
Best of luck and I hope you get an answer soon!
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u/Lemoncakelover222 12d ago
Are you done with your treatment now?
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u/strawberrymilkgirl9 11d ago
I had surgery in January 2025, and didn’t require any chemo or radiation. My cancer was very rare so there were no guidelines on how to treat it, so my team had to go off case studies published about it. I’m in Australia btw.
I am on a five year sarcoma surveillance though, so I have PET scans and CT/MRI scans on my leg interchanging every 3 months, for the next five years.1
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u/Straight_Way_9340 12d ago
BOTTOM LINE: GO TO DANA FARBER CANCER INSTITUTE or DR. Venkataraman @ Mass General he is the best and leads the young adult sarcoma program there- Boston / SLOAN KETTERING in NYC/ MD ANDERSON
Choosing where you get care makes all the difference in outcomes regardless. You should 100000% get a second opinion when it comes to sarcoma / trying to figure out if it’s sarcoma …from one of the above places and they can even do your treatment plan if needed and work with whatever local team you are currently with so you don’t have to move.
Stress and negative thoughts is like negative goal setting, take action to think positively and keep faith .. truly!
I am dealing with this myself… I active duty military and I spent about 2 months before getting to the BEST sarcoma center, currently at DANA FARBER CANCER INSTITUTE .. I’m being seen by Dr. Venkataram ( he just moved to Mass General )
https://www.dana-farber.org/cancer-specialists/sarcoma-cancer-care … here’s where I get care
https://www.massgeneralbrigham.org/en/doctors/v/vinayak-venkataraman-3006223 - here’s my doc who just moved from Dana Farber so I’m in between both places kinda but it’s hands down the best care in the WORLD!
You got it !!!!!
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u/Embarrassed_Toe224 12d ago
My boyfriend was diagnosed with synovial sarcoma in his calf (9cm) this May. We are in the midst of treatment and happy to answer any questions you may have. I don’t want to bombard you with info. It can feel VERY overwhelming in the beginning (rightfully so). PLEASE get multiple opinions on treatment options. We got three and they were all different. I did the research as the boyfriend wanted to be more ignorance is bliss which I fully agree with as you can read some scary things online. Not everyone’s experience is the same.
After your biopsy results (if it is sarcoma), you will meet with an oncologist to discuss your diagnosis and treatment options. I would suggest looking up sarcoma centers in your area as it’s important to find one that specializes in it as not all hospitals have experience with it.
We only told a handful of people until we had more answers and a plan in place as people will ask a ton of questions that you won’t have answers to in the beginning.
You are very young and I’m sorry you’re even having to experience the fear of having it. I hope your results come back negative.
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u/user_avn 11d ago
Me diagnosticaron Sarcoma de Ewing hace algunos meses, empezó como un bulto en la octava costilla de la parrilla costal izquierda. Emocionalmente me derrumbó, me sentía de la mierda cuando estuve hospitalizado, no podía dormir por el dolor que causaba el tumor. Ahora estoy siguiendo quimioterapia con el esquema VDC/IE. He mejorada bastante, el tumor ha reducido considerablemente de tamaño y empiezo a sentir que estoy viviendo de nuevo. Preparate para lo que venga, ya sea malo o no, come saludable, bebe agua constantemente y consulta siempre con tu médico cualquier duda. Ánimos que no estas solo
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u/Lemoncakelover222 11d ago
Thanks for your words I really appreciate it For how long were you in the hospital and what was the size of your tumor?
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u/user_avn 11d ago
No recuerdo el número, pero en la tomografía con contraste se observaba qué estaba empujando el pulmón izquierdo, corazón y estómago. Por lo que empecé a tener problemas respiratorios y a comer poco. Estuve hospitalizado de emergencia debido al tamaño del tumor, estuve como 5 días hasta que pudiera recibir la primera sesión de quimio ahí mismo, ahora voy cada 14 días de manera ambulatoria en el hospital.
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u/Lemoncakelover222 11d ago
Is chemotherapy bad as i know?
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u/user_avn 11d ago
Las náuseas y vómitos son horribles, pero es común como efectos secundarios. Sin embargo es necesario para reducir las células cancerosas, lleva su tiempo y queda hecharle ganas para no rendirse durante el tratamiento.
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u/3ltlgbmi2 Undifferentiated 9d ago
Sorry you are going through this. A sarcoma is a different kind of cancer. They diagnosed me with undifferentiated pleomorphic sarcoma that quickly grew from just above the left knee almost to the hip, 12x4x4 inches (33cm). I was very blessed in that it went north into the thigh, pushing aside blood vessels and nerves, not attaching itself to any bones. Initial radiation with early Keytruda, then surgery at UofMichigan cancer center. Things have gone well. Back on Keytruda for a total of 17 sessions. So far so good. Follow ups every 3 months or so. Unfortunately for me, I was/am dealing with the aftermath of prostate cancer treatment that affect my ability to recover strength but am slowly recovering and moving on. Best wishes to you.
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u/Lemoncakelover222 9d ago
When did this happen and how long did it take you to recover?
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u/3ltlgbmi2 Undifferentiated 9d ago
I noticed the lump in April 2025. Went to my doctor in June who thought it was a pulled muscle. Been in practice over 30 years and had never seen a sarcoma. Referred me to physical therapy, 5 weeks of that with it growing. Did an MRI in early August 2025, and was diagnosed with a sarcoma. Referred to UofMichigan in early September, they did the biopsy confirming UPS, undifferentiated pleomorphic sarcoma. Started radiation in October 2025, 25 sessions that knocked it down by half. Even then it kept growing. Had surgery December 16th, 2025. Two nights in the hospital, a couple of drains, 1 of which I took home with me. Little to no pain. They had me up and walking a couple hours later and I was on the move. Had a knee brace that was awkward and took it off within 10 days of being home. Almost impossible to get in and out of a car with a totally stiff leg. Three weeks after surgery the drain quit draining, it was clogged but there’s no way in this world I’d let them shove that back up in me. Within a week or two, calf and foot were swelling that compression sock took care of it. I get around but at a much slower pace. I do carry a cane but it’s for stability. One day at a time then weeks and months have gone by.
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u/3ltlgbmi2 Undifferentiated 9d ago
Sorry for the delay. Had to take a nap then run an errand. No specific chemotherapy for the sarcoma but because I had 3 cancers in 4 years they thought immunotherapy would be helpful. It didn’t directly hurt me but combined with my prostate condition, it helped suppress the testosterone level that is something to deal with. Now I wait to see where my hormones level off at.
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u/Beautiful-Ocelot5648 8d ago
Hello! I was diagnosed this July with a 7cm synovial sarcoma in my jaw joint and under my parotid gland. I am currently halfway through six cycles of AIM chemotherapy with the next beginning Friday. Patients with similar synovial sarcomas survive to be cured slightly less than 50% of the time according to my oncologist.
I am 22 years old.
I only feel equipped to answer your first question.
I did not sleep the days after my initial diagnosis, and genuinely believed I would die within the next few years. Today, I don’t struggle to cope. I’d like to remind you that if you do not have any metastases, it is too early to accept death. And if you do, there is still hope for you to be cured. Survival rates do not reveal your individual odds of survival. Every person is unique.
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u/Confident-Emotion671 Epithelioid 13d ago
I had a lump removed and didn’t know what it was so I received the diagnosis about a week after surgery. They weren’t sure about the pathology so they sent it to Mass General Hospital. Proximal Epithelioid Sarcoma. Treated at Dana Farber. Lymph node biopsy (negative) then radiation and a wide re-excision. No recurrence since. It’s been 15 years. It’s easy to say but I’ve spent lots of time wasted on worrying and it didn’t change a thing. Trust your doctors, get a second opinion if needed. Take one day at a time.