Just to vent. I underwent surgery, to remove my “schwannomma”. Tumor was stable for years, not changed in a size and doctors and radiologists were positive that it was benign. Biopsy after surgery and following genome testing reveal it was MMNST ( mutations in the PRKAR1A gene) Very rare malignant nerve sheath tumor. Since it did not grow for years, doctors insisted to do radiotherapy, but they did not rush. But story is not about it. On the internet I found a patient with a same type of tumor. I said hi and asked how is she feeling and doing after radiation. She started to ask me as if under interrogation. I even sent her documets from my studies, to proof that we are in the same boat. Then she said I'm fucking liar, and I made up the story, and English is not my language, that means I'm not in USA and my pathology report is false. First time since I got a diagnosis I feel so depressed.

Hi, I'm Male (27 years old) reasonably fit and healthy until I got diagnosed with synovial sarcoma about a month ago. I underwent surgery to remove the tumor located at my left armpit. Luckily highly local and no found metastasis from the scans.

My chemo treatment is starting in a few weeks time and will be given daily for 4 days and repeated every 21 days for 5 times. I'm receiving Doxorubicin + Ifosfamide + Mesna. I've searched it's also called the "AIM" protocol.

This is not something I know a lot about and would like to know more before my treatment. Has anyone done a similar protocol? How have you managed the side effects? A quick search online shouts that it's a hell of treatment and I'm bound to have the worst time; making me worried. Any chemo tips, heads up/what to expect, or personal experience with recovery is greatly appreciated.

Update: Thank you all for the generous response. I now get that it would be tough but not impossible especially with your valuable insights. I’ll keep this post updated as i move towards a cancer free life. Stay healthy, take care.

Whenever I try to eat, the gases start moving around and I get more pain so I end up not eating that much.

Hi all, my partner is in his third year of dealing with myxofibrosarcoma (or also possiby undifferentiated pleomorphic sarcoma). Year 1 tumor in the leg, removal, and radiation. Year 2 tumor in the hip and removal, lung nodule chemotherapy with Doxyrubicin and then removal. This year he's got a small mass again in the upper leg with a lot of pain at the sciatic, and is now doing Nivo Immunotherapy.

His bloodwork, RBC, HCT, RDW are all wonky and have been.

He's got a lot of pain and has been told to take oxys for the time being. Also has been foggy/fuzzy headed, more blank (understandable).

My questions are about what should I be asking the doctor? Is the bloodwork just going to be be abnormal from this point forward? Is the foggy/fuzzy headedness, memory issues due to chemo? Or the cancer itself?

I know a bit about the last 6 months of a person's life due to having taken care of my parents, but have no idea how to frame the new "normal" in metastaic cancer. All the questions seem weird to ask, like, will he be more and more foggy over time, will this pain be a permanent feature? If so, how do I help my partner?

These questions may not be easily answered by this group and I will reach out to the doctor (is it ok to have a private conversation with her??), but wondered your experience. Thanks in advance.

I'm so beyond upset right now. I just really need a place to vent.

I have Epithelioid Sarcoma, it's 8 years old due to a misdiagnosis. I was about to start radiation when they found spots on my lungs. So off to get a lung biopsy I went!

It's been two weeks of stress while we wait to find out if I have lung cancer now too. Only for my doctor to call me and say that the sample is too small to tell if it's lung cancer or not. They have a tumor board today, and will be discussing my case with other specialists. I will find out on Thursday if they have an answer or if I have to drive another 2 hours and back another 2 hours to get another lung biopsy.

I'm so frustrated and upset. I feel hopeless and helpless. And I can't do any of my hobbies anymore due to pain or loss of mobility in my left arm/hand. I just don't know what to do or how to cope with all this stress I'm under. My tumor is growing every day, and I've lost almost 30lbs in the last 3 months because I just can't eat. Everything has just become so horrible. I'm even having panic attacks when I have to leave the house, because of how often I get hurt while out.

Hi Friends,

I’m 12 months stable on Pazopanib (Votrient), with about 20 nodules spread across both lungs. I’m grateful for the stability, but I know it won’t last forever. I have Solitary Fibrous Tumour, and there’s little to no evidence that chemo will help in my case.

Here in Canada, local intervention for multiple lung nodules is rare — the focus is usually on systemic treatments. So I want to cast a wider net and search for more options.

Has anyone here faced a similar situation — 15+ nodules — and had success with local treatments like surgery, ablation, or radiation? I’d love to hear what worked for you, what didn’t, and any advice you wish you’d known earlier.

Hi everyone,

My dad was recently diagnosed with myxofibrosarcoma, and the tumor was already removed by a general surgeon before we got a biopsy or full diagnosis. We want to go to a top sarcoma center for a second opinion and proper treatment plan, but they don’t accept his insurance.

Is it possible to pay out of pocket just for the first or second visit, get a full treatment plan, and then receive the actual treatment at a hospital that does accept his insurance?

Has anyone done something like this before? Would love to hear your experience or advice. Thank you so much.

Hi friends

I did six rounds of dacarbazine and doxorubicin for a large mass in the pelvis. It did not work and she kept growing slowly about 1 cm a month. We are beginning 5 weeks of intensive radiation. I'm wondering if anyone has experience with radiation on LMS and success? I'm so stressed.

https://www.onclive.com/view/cld-201-viral-therapy-receives-fda-fast-track-designation-for-soft-tissue-sarcoma?fbclid=IwQ0xDSwMAWThleHRuA2FlbQIxMQABHr4VWDn-JUIbJOZNDcPDPbbWSMviL-67epjwQrVplRNMEZdX1B2ntPDHqDWm_aem_Rl5mpl0ztSCHoweJ4iS7jA

My fiancé (38M) was diagnosed with sarcoma in early April. Painless lump that popped up in his thigh and grew pretty quickly. We are in Chicago, I work in healthcare, and all things considered got into a specialized sarcoma team at Northwestern and started treatment asap.

On biopsies they called it myxofibrosarcoma, but also under the umbrella of undifferentiated pleomorphic sarcoma. Standard of care is 5 weeks of radiation and then surgery. New studies indicate immunotherapy to be helpful (pembrolizumab) so our Med Onc also suggested it which we did. He got a dose of Pembro before/during/after radiation (which is when they think it is most beneficial anyway), and 1 additional dose (given every 3 weeks for up to 1 year). Radiation went well, surgery went well, pathology came back with negative margins and 60% necrosis, so a good response to pre-op treatment.

Now we hit our road bumps. He unfortunately also has Chrons disease, has had it for 10 years and is very stable on infiximab. The Pembro has the possibility to flare up his Chrons, which it did after surgery. They are calling it immune checkpoint inhibitor colitis, aka not related to his Chrons but from the Pembro. He got a colonoscopy with biopsies to confirm diagnosis (still waiting for results) but all signs point to this.

We see his Sarcoma Med Onc yesterday, who just wanted to follow up on his GI symptoms. He confirmed that we will stop Pembro, but he feels my fiancé got probably the most benefits of it. He explained that we still don’t really know “how much Pembro is the right amount of Pembro” and they are actually starting a clinical trial in Canada soon where they only give patients 3 doses of it before/during/after radiation. We leave the appointment, confirming what we expected. Definitely disappointing to not get the full year of Pembro, but grateful we got some.

He calls us back in the elevator and asks if we can come back upstairs to talk about other options. We go back. He comes in and says he was thinking about it more after we left. He hasn’t had a patient in my fiancés situation who couldn’t tolerate Pembro, but is still in the window of getting chemotherapy. And threw out getting 4 rounds of AIM chemo, hard hard stuff. Potential for lots of negative side effects, including cardiotoxicity. He doesn’t know if it would help or not. He doesn’t know what the right decision is. My fiancé has had a negative PET scan, CT scans have been basically clean. 2 micro nodules that they are watching, but no evidence of metastatic disease. Will be scanned every 3 months moving forward for surveillance.

This whole appointment was rattling. I almost wish he didn’t call us back and open this can of worms. There isn’t clinical evidence to support doing chemo. My fiancé doesn’t want to go down this direction when it feels “experimental” and I agree that benefits don’t seem to outweigh risks. God forbid something pops up down the road, of course AIM would be our treatment. But given chemo kills rapidly dividing cells and he has no evidence of metastatic disease, I don’t know how much good it would do. We would otherwise just be in surveillance mode anyway.

I did ask the Med Onc if we should be going for a second opinion, maybe see if someone somewhere else has been in this situation. He mentioned MDAnderson is extremely pro chemo, not necessarily the most evidence based. I think they also just get a lot of sick patients with no other options left. But that if we were to see someone else he would recommend Sloan Kettering and Dana Farber.

If you’ve read this far, thank you. I’m just looking for anyone’s experience from a similar situation, getting a second opinion, any sarcoma recs at those two institutions, etc.

I finished chemo for osteosarcoma in January.

I’ve had a pain near my ankle for about a day and I’m completely spiralling. I’m sure it’s muscular, but I’ve fallen right into assuming it’s a recurrence.

Just want some reassurance / perspective. I had a great (90%) necrosis rate from chemo and my prognosis is good, but one pain for 24 hours and I’m right back to THAT place.

Hello, despite having to wake up in 4 hours I cannot sleep so here I am. I was diagnosed with grade 3 Spindle cell Sarcoma when I was 24, altho looking back I definitely already had it when I was 22-23. (I also still don’t understand what grade 3 means? my oncologist just said sarcomas gets grades not stages.)

My GP didn’t believe me at first, told me not to worry too much as I’m young(even with family history of cancer!!). I stood in his office and demanded that he will refer me for scans otherwise I won’t leave. F*k that guy.

Despite the rough beginning I think I had it relatively good tbh, I was told I found it very early. I didn’t need chemo but only did 5 weeks of radiotherapy. The radiation burn was no joke tho… one of the most pain I’ve been in.

Had a surgery for definite removal, where they put synthetic mesh(?) under my skin and ended up being infected. One night a Niagara fall of puss just started off my belly, it really was not fun 🤢 Had another surgery where they used bio mesh as they suspected the synthetic mesh was the cause. The scar took about 6 months for to fully heal. Also had a clot(DVT) in my leg. Apparently it was so small they didn’t believe me until they spotted it with help of 3 other specialists. The whole ordeal was so… dramatic. I think I might be experiencing PTS now.

It hasn’t even been 2 years. I’m honestly back in my normal life, working a physical job(I make 🥐 for living), making cancer jokes. I’m a pilates girly and since they took out a good chunk of my core muscles, it hasn’t been the same. I get quite sad when I can’t hold my crunches as long as I used to. It also left be a really big dent on my belly. I’m trying to see it as a medal and take pride in it.

Of course, on nights like this where I’m left alone with my thoughts… I feel like in one way or another I’ll have cancer again someday.

Anyways, if you made it till here, thank you for reading my word salad. Have a good night x

On Friday I have surgery to remove a tumor of extraskeletal myxoid chondrosarcoma via amputating my left middle toe and I hope to be 100% cancer free after that. I assume for the rest of my life I will have to do regular imaging. Is there a "best" imaging and time interval? I assume its every 3 months and getting it more frequently isn't possible? Hopefully not every 6 months because that feels too long. Also for the imaging itself what would be ideal? A full body MRI? Full body PET scan? I've read somewhere that a full body Pet scan with some CT scanning like the chest and other parts of the body is good? Any input would be greatly appreciated, thank you.

My (28M) Dad (55M) began his journey with his sarcoma close to 2 years ago*. He felt a bump (for him it was in his thigh). Was told by his general practitioner that it was likely a lipoma. He waited a few weeks after that, but still felt off about it, and went back and asked for a referral to a general surgeon.

I'll skip a lot of the details because it's been a long journey, but a general surgeon ended up conducting the surgery (no biopsy was done prior). Looking back, we'd of course have gone through the proper channels and done things in the 'proper' way, going to a sarcoma excellence center off the bat. But his general surgeon did try his best to do things right.

Pathology came back as a 3.2 cm pleomorphic liposarcoma. The size measured was a bit surprising considering the measurements on the former CTs and MRI were a bit larger; the MRI showed a dimension of around 5cm for reference. After a while of meeting oncologists and radiation oncologists, they took our case to their tumor board and were recommended to get sent up to the Mayo Clinic where we've had his surveillance done ever since.

During this timeframe of surveillance there has been the occasional red herring, for example a cyst on his kidney that ended up being completely benign. But one that was originally thought to be a red herring has seemingly morphed. They noticed this curvilinear location in the surgery bed, that they could loosely measure. But they monitored it extra carefully (they did an extra MRI 2 months after it was initially noticed and noticed very little change, and figured it was some kind of edema filled area, probable for post-surgical healing.) Unfortunately, in his latest scan 10 days ago, they noticed that there is now a mass there, surrounded by edema. It's largest measurement on MRI was 2.4cm, but they did a biopsy, and it is indeed a local recurrence.

Chest CTs came back clean luckily, but we're now pretty worried again, not that we ever stopped worrying of course. It's just...real again. Since his initial diagnosis 17 months ago, I've read up a lot, I've looked at various studies and research papers for his subtype, and I know that things are still able to be treated with how his current situation is. It's just very hard to be super upbeat considering his chances of recurrence with the negative margins should've been pretty low to begin with.

After speaking with his medical team at the Mayo, plans are for neo-adjuvant radiation into surgery to remove the tumor. His Ortho surgeon told us that she could predict a less than a 5% chance of recurrence, and that he should retain full use of his leg (maybe some stiffness) with his plan which was great to hear! Radiation should start in the next couple weeks (they have to get another scan of his leg to setup a simulation for the radiation planning, that's coming this week, not yet scheduled.) Radiation will be 3 weeks in length, his radiation oncologist said that it's that or 5 weeks, but he's noticed no real difference in outcomes, so he would recommend the shorter length especially because my dad will be driving there every day (90 mins there, 90 back.) I will of course try to accompany him as many days as able; my boss has been very lenient with my work schedule due to the situation which has been great.

After the radiation and some time for healing, they'll do another MRI and another chest CT. We're both extremely anxious about this chest scan already.

I'm not really sure what I'm looking for here, reassurance? Solidarity? I guess I'm just scared and figured it would help to share. I don't like being negative around my Dad, I try to be very positive on the situation, but sometimes the negative thoughts creep in when I'm alone.

I don't know how some of you deal with it, I'm really sorry to people that have to deal with this, or any type of cancer. It's terrifying and exhausting for me, and I'm not even the one living with it.

EDIT: Changed a few words

My doctor had me do a lung biopsy on Tuesday, and it should be about 2 weeks for the results. I'm just shy of halfway there. But the waiting and stress are starting to get to me. I have a young son who is extremely sensitive to others emotions, so I am trying my best to ensure my stress doesn't cause him distress.

I have an Epithelioid Sarcoma (8 years old) in my left forearm. It has caused a massive loss in mobility and a lot of pain. Basically, I can't use the hand and sometimes even the arm. And unfortunately, most of my hobbies have become extremely difficult, painful or actually impossible for me to do.

I have been trying to find new hobbies and find ways to adapt my methos for my old hobbies. But I'm finding it extremely difficult.

I used to bake and decorate cakes and cookies, paint, color, put together Legos and miniatures and had just started getting into video games for the first time right before my pain got too bad. But now, I just can't adapt and can't enjoy the things I loved.

It's even hard to go out and enjoy nature, because it's extremely hot where I live and I can only walk for a few minutes before feeling sick.

What do you do during the waiting periods? Especially if you also have any similar loss in mobility and stamina. I would love any suggestions on what I could do to help distract myself more, or maybe ideas for how I could try to adapt my favorite hobbies I can't do well/at all anymore.

Thank you so much! I hope everyone has had an amazing day.

Hi, I’m 17 and recently found out someone really close has been diagnosed with Desmoplastic Small Round Cell Tumor (DSRCT). I know it’s really rare, but I’m trying to learn more, especially from young people who’ve gone through this. If you’re open to sharing your story or advice on treatment and daily life, I’d love to connect.

Welcome to Sarcoma Saturday.

Your weekly space to connect with the community beyond the usual flared-topics. Whether you’re here to share a personal win, talk about how your week has been, or just drop a lighthearted thought. Need an area to express concerns, or just to open up some- this is your place!

Feel free to:

• Share updates about your journey or caregiving experiences.
• Ask non-urgent, casual questions.
• Recommend a book, podcast, or show that’s been helping you unwind.
• Celebrate small victories or share challenges in a supportive space.

Let’s take a moment to connect, recharge, and remind each other that we’re not alone in this journey. Whether it’s about Sarcoma, life in general, or something entirely random, we’re here to listen. 💛🎗️

As a reminder: Comments asking the community to interpret symptoms or provide a potential diagnosis are not permitted.

My father in law was just diagnosed with stage 3 soft tissue sarcoma and need advice on what I can do to be supportive, and what to expect. He’s a very healthy guy, exercises 2-3 days a week, never smoked, never used drugs, rarely drinks (maybe a glass or two of wine). He’s an ophthalmologist and my wife is in residency to be one as well, so they know about this disease from being in physicians. I’m extremely close to my father in law and it’s been devastating to our family already. My wife is currently pregnant with our first child, so I’m taking on being the positive force.

I like working out so I plan on spending a few days a week doing his physical therapy exercises with him when the time comes. I’m also planning on cooking a few days a week for him and my mother in law. I also plan to offer going with them to church as well. I’m looking for any advice on ways to be supportive without being overwhelming.

I’m also not sure what to expect while he goes through treatment and what I could do to be helpful. He’s planning on starting radiation treatments and having the sarcoma removed at some point. Any suggestions on what I can expect would be appreciated because I’m terrified myself but want to be as strong and supportive to my in laws and wife.

Has anyone here survived mpnst i read a lot and herd some don’t make it 5 years … and im scared I got diagnosed recently and they wanted to amputate my leg because it was in my ankle I fought and did a surgery where I kept my leg they took muscle from my back and skin from my leg but they want me to do chemo and radiation .. don’t really trust it especially with NF1 if anyone got any tips .. or better stories please lmk

One year ago, my 23-year-old brother was diagnosed with Ewing’s Sarcoma of the soft tissue above the radius bone in his right arm. He received chemotherapy, underwent surgical removal of the tumor, and completed 30 sessions of radiotherapy. Three months later, the tumor returned above the elbow in the forearm bone of the same arm, and he continued with chemotherapy.

Yesterday, he had a PET scan. According to the oncologist, there are now active metastases in the spine and pelvis.

I want to ask Would amputating the arm at this stage help, even a little, in improving the treatment outcome?

Please give us advice on what we should do next. We are desperate for guidance and hope

Just been informed today that i require a biopsy carrying out on a possible sarcoma in my left thigh, this is to be carried out under local anesthetic and ultrasound/needle. Any tips for what i can expect from people's experiences? Pain or any slight discomfort? Just trying to be fully prepared for when I go.

Hi friends, posting because the last relevant thread was over a year ago and I'm starting this after a big recurrance. Hope it's okay.

Can anyone give me the low down on their experience with gemcitabine and docetaxel? I'm starting a new regime with them tomorrow (day 1 gem, day 8 gem and tax, rest until day 21). I was previously on the red devil and ifosfamide which did tremendously well, but my lung mets decided during surveillance break to come back massively so we are hoping gem and tax will stop the party they're having and show them who is boss. Trying to mentally feel positive and prepared as much as I can, as my treating team were really shocked my growth has been so aggressive given my previous great response to AIM and age (34). So, gotta try something new.

I've heard that gemcitabine and docetaxel won't be anywhere near as strong side effects to manage like AIM was, but to still expect to be knocked out day 9. Any experience and advice with this combo? Thank you in advance.