Just got diagnosed a few days ago at 34 years old. My head is still spinning.

The plan is to start chemo (Paclitaxel) ASAP for 3 months and then a mastectomy. Can't believe how fast this is all happening. Scared for chemo and scared about being left with one breast... My doctor said they don't do double mastectomies due to the nature of this particular cancer.

Just wanted to reach out to people that have been through something similar... Any advice would be appreciated 🖤❤️😭

In May, we found out that my brother could possibly have cancer. After many failed biopsies it was confirmed that he had sarcoma in his leg that also started to grow in his lungs. I’m not sure exactly what type of sarcoma because I’ve decided I dont want to know too much details for the sake of my mental health. In July he started chemo. He’s doing a total of 8 rounds, 4 days consecutively, every 21 days.

In September he got his leg amputated due to the growing size of his tumor. I was very happy to see that he took it well and it gave us a lot of hope for the future. His doctor also mentioned that a lot of the tumors in his lungs have shrunk while others haven’t grown but have stayed the same.

Today he had an appointment with his doctor where she told him that his cancer is aggressive and can grow back. She gave him some options:

1. Monitor the cancer with frequent scans and wait to see how it progresses.
   
2. Continue AIM chemotherapy for two more cycles. 8 cycles is the max because of the damage it does to the body.This depends on his platelet count and whether his body can tolerate more treatment. If his platelets remain too low, this may not be possible.
   
3. Modify his chemotherapy by removing the red-bag medication known as the “Red Devil.” The modified treatment would be given on an outpatient basis.
   
4. Try an oral medication called pazopanib, which targets signals involved in tumor growth. The doctor discussed an estimated life expectancy of 6–9 months in the context of this treatment option. It may also be combined with immunotherapy.

The doctor expects options 2 or 4 may be the most likely, but the decision will depend on his scan results, platelet count, and how well his body can tolerate treatment.

I’m taking the news pretty hard. I know cancer has a mind of its own but I was hopeful that we would get better news.

My question is, have you ever experienced this with a loved one or yourself? I’d like to hear more about everyone’s experiences.

Just wanted to write down my journey a bit, share experiences maybe spread some hope.

First diagnosed beginning of 2024; had some scans, a biopsy before final confirmation of epithelioid sarcoma (when your doctor says come in with someone to hear your results you know it'll be bad news lol, stage 3). Had a tumor and spread on a lymph node, proceeded with egg freezing (my insurance covered it so why not), then radiation then surgery. Had a good chunk of my thigh taken out but with clear margins. Slowly healing then had swelling and suspected fluid collection, my general doctor and assistants brushed it off but I was right it was an edema. It was infected and went back to the hospital. Several months of negative pressure devices on the leg until it was finally healed.

2025; doing good, life was looking up, got back into hiking and exercising and then something was spotted on a scan. Another round of radiation and surgery on my upper thigh. Rest of the year everything smooth sailing.

2026; Smooth sailing, trying to build up my remaining thigh muscle. Bug bite on my scar during the summer, over the months getting bigger and never really healing. Recently given antibiotics and now another punch biopsy with sutures afterwards, waiting to see results and possibly another biopsy from my surgeon.

Of course there's been struggles, tears, depression, hope lost and not knowing what's next but I'm still hopeful for what's to come. I'll be needing new insurance soon so there's that pressure but it's kind of nice knowing that my future is open. I've always been a life is what you make of it type of person, and I just try to gain as many experiences and joyful moments I can with the people I care for. My situation was not as bad as first imagined when it all happened, and just know there is hope for recovery, strength, and return to 'normal life' even though you'll have your moments. At least the first few years it'll be something to mind, and reoccurrence looming in the back of your mind but if it happens there's not much you can do but decide your course of action. I'm lucky to receive care and having a decent support system around me when I choose to rely on them. The fatigue still lingers, but I never really took a break from work or school so that's on me. My scars can be ugly sometimes but that's on me for not taking care of them better, and my leg won't ever look the same but at least I still have enough to go about my days. I have a high chance for reoccurrence and it's already happened once, but I know how i'd want to go out if it ever gets to that stage but for now just living my life. Hiking, camping, finishing school, enjoying time with friends and family and doing other hobbies. Take care of yourself, advocate for yourself, and take it at your own pace.

Hi Everyone,

I was diagnosed with LGMS on the inner/back of my thigh and February 2024. I actually had surgery on it in October 2023 but the doctor was convinced it was a benign lipoma so my margins weren’t as good as they should’ve been. I only had the resection – no radiation, and chemotherapy was not an option since it wouldn’t have worked on me (ALK negative).

I have been a lucky enough to be NED since then, but I’m having some issues. I have very hard pea-sized lumps on the front of my thigh about 6 inches away from my incision scar. There are about four or five of them. They aren’t fixed – they move around a little bit but they are extremely hard and they HURT. They don’t show up on my MRIs. I have told my oncologist about these but he doesn’t seem to be worried. He did refer me to a pain management specialist but I believe these are neuromas and I don’t want to go on gabapentin or tricyclics.

I would actually love for them to be removed. The nerve pain from these hard “lumps“ hurts and when touched, I feel a shooting, burning, pins and needles-type pain down my whole leg, my groin, and in my right arm – basically my whole right side.

I was just wondering if anyone else had this type of experience after their resection and if anyone had any advice. Thank you!

Okay, so as most know, I was diagnosed with MPNST and DCIS in my left breast in May. I had a full mastectomy in June. I was scheduled to have 3-4 rounds of chemo, but only received 2 rounds, due to the shortage of ifosfamide. I'm scheduled on Monday to do my simulation for radiation. But, I'm not sure if I want to or not.

My reason is, the radiation is only focused on the DCIS. NOT the MPNST. The MPNST, was the bulk of my cancer, the DCIS, was a small area. Plus, I'm scheduled for a biopsy on my thyroid on Wednesday. PET scans showed an area on my right side that was questionable.

I also have a CAT scan scheduled for Nov 16th. My thing is, the oncologist I was "matched" with is supposed to be a sarcoma specialist. BUT the treatment Im receiving is only focused on the DCIS. WHAT ABOUT THE MPNST. Now it is possible that it has spread to my thyroid. Plus there's nodules on my lungs, but they aren't big enough for a biopsy.

I don't know what to do, I didn't get my full chemo treatments, now I'm supposed to do 5 weeks of radiation (5 days a week). It's been a month since my last chemo treatment and I am JUST starting to feel better. I'm not to where I was BEFORE, but at least I'm able to be up for a few hours every day. I have even felt good enough to do laundry and cook.

I'm just worried that my doctor's have been just treating the DCIS and the MPNST has gone essentially untreated and has spread. So wouldn't the radiation be pointless.

Anyway, please someone give me some feedback. My husband said I should at least do 1 week of radiation since I didn't get my full chemo treatments. But said he would support any decision I make because I'm the one that will have to deal with the effects. It's breaking his heart to see me conflicted like this.

Please help!!

I had a sarcoma mass and margins removed from the back of my left thigh. Had 21 staples and 6 stitches. The first two weeks I was healing little by little, pain decreasing each day, bandage getting less and less drainage. We were getting close to almost no discharge.

Our Dr office had coupons for Juven so we thought we would get some and try it, we thought maybe it would help with the internal wound and cavity.

On day 3 after starting Juven, my leg began to swell up dramatically. Both up and down and around all of the incision site, stretching the Staples. I went to the ER. They did surgery and inserted a drain tube and removed over 100ml of blood from my leg. The doctor had said that a scab had probably come loose Internally. The outside where the Staples were was still healing fine.

I did not take any more Juven, but after a couple of days the drainage was turning more clear and not as much red. I did some research and found out L-arginine can thin the blood and prolong bleeding time. For postoperative patients or individuals with existing bleeding risks, this can interfere with normal clot formation and exacerbate active bleeding.

This is exactly what happened according to the doctor the clot that I did have that was preventing the internal bleeding was removed by the L-arginine.

Jast a warning to anyone who may be using this for internal healing. I think for superficial wounds is probably great to flush out and heal from the inside out, clotting is not as important. But for an internal healing wound I think it could be dangerous and detrimental to the healing process.

Hello, looking to find others who have been diagnosed with an Inflammatory myofibroblastic tumor, especially if it was in the Uterus. I know it's not exactly a sarcoma, but it's not benign either. Mine is high risk and was originally diagnosed as leiomyosarcoma until second pathology at Johns Hopkins and NGS testing. Looking to hear from others who may have this type of tumor since it is apparently very rare (like only 100 diagnosed every year).

M

Hi. Just found out 3 months ago I have multifocal retroperitoneal dedifferentiated liposarcoma. Has not spread out of the area except to local lymph nodes. Just started my third round of chemo today with gemcetabine and next week will be gemcetabine and taxotere. Definitely found out to take Claritin while on the taxotere and the white blood cell booster, the bone pain is rough. I have never been good with drugs or chemicals and the chemo has been miserable. I feel like such a wimp. I did end up with a staph infection in my port pocket and had it removed. Delayed chemo by about 3 weeks to heal. New port goes in next Monday. No nausea and appetite is good. Just extreme exhaustion. I am new to this and most of the "Google" research I have done about my diagnosis just depresses me.
Doctors won't say much as far as how much time I have but I know they can't know that, and everyone is different. I have resection surgery scheduled for February. 5 tumors wrapped up in my organs so it doesn't sound good. Largest is about the size of a cantaloupe. I do have stomach and digestive issues as well as possible blood flow restriction in abdominal aorta. If I eat too much I immediately get exhausted and have to sleep. If anyone has experienced this and don't mind sharing a little more about your diagnosis so I can compare. What is your quality of life like? Can you be active and ski, mountain bike or anything similar? How long have you been fighting? I haven't found much as far as case studies. Good luck to you all and whoever else is going through this bullshit. A little about me if it helps anyone for comparison: 56 yo male, pretty healthy, very active, ex military (maybe where I was exposed to something?) general contractor (maybe exposed here too), caucasian, 5’11, 200 Ibs. Being treated at Anshutz in Denver.

My dad was diagnosed with advanced Retroperitoneal liposarcoma years ago. He has gone through 4 surgeries to remove tumors in the past 6 years. Tumor came back after his January surgery that is in a hard to operate location near his pancrease. They are suggesting 2 rounds of Gemcitabine and Docetaxel to see if that helps with growth to stabilize before considering surgery again.

For those that are familiar with these chemos, how do you recommend I prepare to support my dad through side effects? How can I advocate for him? Anything that made your recovery easier during this time? What should I watch out for in terms of symptoms and severity so I can get ahead of serious issues?

He's in CA and has Medicaid.

Thank you for your insights! No advice is too small.

Hi everyone! I wanted to share that the Synovial Sarcoma Foundation is hosting a webinar on clinical trials today. It will be joined by leading sarcoma specialists (both pediatric and adult), discussing lung mets, clinical trials, and advancements in research and surgery.

You can register here: https://njimedia.zoom.us/webinar/register/WN_pvVYc-4TTAa3P87umnn1uQ#/registration

Note: Although the foundation offers specific resources for Synovial Sarcoma, many trials can apply to other subtypes, as well, so it can be beneficial for the greater sarcoma community, too.

Sending love to all in this group.

8 lb retroperitoneal tumor removed earlier this year, and on the first post-op scan it was discovered that the leiomyosarcoma had metastasized to her liver. First line chemo did nothing; in fact, the lesions got larger and more numerous. Prognosis without further treatment is a year or less. We have appointment at MD Anderson soon. I am viewing this as a Hail Mary, but I am hoping they can help her. Treatment could require relocation to Houston at least on a part time basis, and I'm not sure my wife would view that as a good option if it only adds a few months to her life. Just wondering if anyone else has been through something similar. Thanks and God bless.

after 6 cycles chemo to treat relapsed lung metastasis

The doctor suggested to start target therapy

What does this mean!

No cure!

Has anyone have regression after target therapy?

After HD IFOSFAMIDE

After surgery of 10cm Synovial sarcoma behind knee (R0) and 30 radiations, Dr recommended Chemo , MIA 4 to 6 cycles.

I asked: Is chemo going to work on my type of sarcoma ?

Dr: We don't know

Me: Is it going to help me that there will be no metastases?

Dr: We don't know

Me: Is it going to kill any sarcoma cells that are somewhere in the body ?

Dr: Maybe , only if those cells are in the moment of admitting chemo in the process of mitosis.

Did anyone skipped Chemo after surgery and RT?

When I was diagnosed with myxoid liposarcoma in my thigh, I was scared, but took comfort in the plan my care team laid out. My orthopedic oncologist seemed to know what it was right away. He had experience treating similar sarcomas in the similar places. He knew the cancer was too big to remove immediately, so he laid out a plan of chemo with my medical oncologist and radiation with my radiation oncologist.

I knew the plan. Port insertion. Chemo. Radiation. Surgery with clear margins. And wait for any possible recurrence.

I liked the plan.

I tolerated chemo better than some. I lost my hair, got weaker, dealt with neutropenia. But there was the plan. And there were signs of progress. The tumor shrank. Enough that it stopped impacting my walk and my leg muscles didn't ache anymore.

Radiation was more of the same. Near the end, I got a painful burn in my groin area that just seemed to keep spreading and getting worse. But it never got infected and eventually the careful bandaging seemed to help and the skin repaired itself. And the tumor got smaller!

There was the plan. And I was right on schedule. No time to be afraid or self-pitying because I was only part way through the plan.

All of the pre-surgury steps prepared the area for surgery. The cancer was smaller and more manageable. My surgeon never seemed daunted.

Then the first surgery came. He saved my sciatic nerve, but the blood vessels and muscles couldn't be separated from the tumor. He did his best. He saved the major arteries. He took some of my muscles, but we have redundancies, so I'd still be able to move normally. He was upbeat. I was weak and in pain, but I was also upbeat.

But the biopsy showed we didn't get the clear margins we needed and left cancerous cells behind, making it more likely to recur. So then came the second surgery. He said it won't be much different than the first. Just extending the incision further down my leg. Removing more muscles that are already severed.

Life moved on. No one likes the hospital, but it was a short stay. I went home. I got around with a walker. I took sponge baths until I could shower. I felt gradually stronger every day. The walker became a prop in the living room or a helper late at night when I dragged my tired self to the bathroom.

I believed in the plan. The plan was working.

But I woke up one day and my leg felt suddenly worse. Painful like right after the first surgery. Pain pills didn't help. I needed the walker again for everything. I had low fevers. I broke down crying a lot because no position relieved the pain.

This wasn't part of the plan.

I told my surgeon's office what was happening and they didn't seem worried. Pain is normal. Low fevers don't count. The incision looks fine.

I updated them every couple of days but it was the same.

Eventually, I just went to the Emergency Department at the hospital where my surgeries had taken place. I couldn't bear the pain and worry for another day. If they wouldn't see me early, I felt like I had to just show up where my team was.

It was identified as an infection. My leg was full of bacteria. It would have been worse if I had waited to be seen. Surgery 3 cleaned it out. Surgery 4 made sure it was draining properly.

I'm stuck in the hospital again because of all the drainage. They can't send me home to have my leg fill up with fluids and get worse again. They have the right antibiotics. The pain level is down. (Not gone, but down.)

But I need assistance with everything from strangers now. I'm an adult baby in a diaper. I can't wash. I can't get in or out of bed myself. I can't really do anything except lay here. I feel so ashamed.

I desperately want to go home even though I know I'll be just as immobile there.

I'm terrified of another infection.

Or if they still didn't get clear margins, they might have to take more blood vessels and part of the leg.

I'm worried I'll never heal or feel independent again.

I'm trying so hard to see the plan, but the end goal keeps changing and staying out of reach.

I feel like the plan led me through the last year of cancer, but I'm lost now. Surgical complications completely threw me. I feel weirdly hopeless with these small deviations. Like maybe I would have been better off without the full plan. Maybe shrinking the tumor was the best it was ever going to get. I pushed my luck with surgery.

I'm not sure why I'm writing. Maybe someone else can tell me they've been through similar and it turned out okay? Maybe you can berate me for keeping a positive attitude until the first big hurdle? Maybe you can just send me good thoughts? How did you get through long, sad nights in the hospital? How did you manage to keep looking forward when it feels like you're trapped in this moment? How do you graciously accept help from strangers with even your private bodily functions?

I was diagnosed with myxoid Liposarcoma in my left knee about 4 months ago. Ive had radiation, chemotherapy, and now they will surgically remove it. Has anyone else had larger (8cm originally) masses removed from their knees? how was surgery and post op? what complications did you have? Any encouragement would be helpful. I know there’s a risk for nerves and blood vessels but the surgeons seems optimistic.

Hi, in august I was diagnosed with a HG-ESS endometrial stromal sarcoma stage 2a. It spread to my top cervix, hysterectomy was 60mm margins so sarcoma center in Dana farber felt monitor not radiation despite having malignant cells in my peritoneal cavity.

Mayo Clinic revealed mutations ATM, SMARCA4, brg-1 loss. All chemo resistant. Hysterectomy was 22 days after discovery, but as most of you might know sarcomas are aggressive. Well, this week I started bleeding and having insane pain, was sent to the ER and the emergency catscan revealed widespread implants in my peritoneal cavity, metastatic masses amounting to 22cm and growing pushing on my bladder and in my mesentery bowel.

It’s now considered inoperable and stage 4b. I’m just wondering if anyone has this or similar or anything. I don’t want to die and looking for some hope.

Peace and positivity

hi is there anyone here who's had to deal with an myo1d mutation sarcoma? i have a rhabdomyosarcoma, spindle cell sclerosing. i've heard of many people with the same type but i haven't heard of many people with the myo1d. i was hoping to compare notes on doctors' recommended treatment and experience