Hello everyone! I just wanted to make a post for people who may be in the same boat as I was last year and my experience. The beginning of last year, i noticed a small lump in my forearm. i didnt think anything of it because it was barely noticeable and caused me little to no pain. But i eventually told my mom about it and she said I should go to a doctor for it anyways just to make sure, so I did. Fast forward to March of 2023, I went to my local family doctor. He felt the lump and ordered me to get an MRI done and so i did and waited X amount of weeks for the results and what not. From what he could tell, he thought it was just a lump of fatty tissue, but he wasn’t certain of his answer so he sent me to an upper extremity orthopedic specialist. And when I went there, it was basically the same thing again. He ordered me to get an MRI done again, waited for the results and whatever… and then that was when i was told that i could possibly have developed a Sarcoma. He was going to send me to an oncologist but my dad and I decided to go to a different hospital that is known for treating and diagnosing cancer, so i went there. I went to an orthopedic surgeon and for the third time, i got an MRI done again but also got an X-ray along with it. You can see the mass in the MRI but the x-ray seemed to be normal. She recommended me to get a biopsy done, which they did it guided by an Ultrasound and weeks later i received the results. Unfortunately, thats when they found Spindle Cells in the mass. But they didnt have enough specimens/evidence of the cell to give a clear diagnosis. And i had to give it a couple weeks to be talked about on what to do and eventually they figured that they will open my arm up on surgery day and slice the tumor, and get it tested at the laboratory right away during my surgery, and receive radiation treatment after the wound has closed. The tumor was located INSIDE my FPL (flexor pollicis longus) muscle. Surgery went well and everything, and I received 6 1/2 weeks of radiation treatment, only on that part of my arm. Its been 13 months since my surgery and im feeling okay. Since the tumor was located inside my muscle, they had to remove that muscle as well. The only thing I cant do with that hand now is bending my thumb, and general weakness in that arm. So i struggle with having a good grip on things but its not something i stress constantly over. I just wanted to share my story, hopefully to help others who may be having the same issue, just because Sarcomas are so rare. Hopefully im helping someone to avoid the financial aspect of it (like me spending $700+ on every MRI only for them to say “i dont know”) and the mental of it. (this all happened within a span of about 8/9 months to finally get a diagnosis) so it was giving me lots of anxiety because nobody had an answer for it. I hope i can help someone! The first picture is my arm before anything was done to it. second picture is my MRI

I am new to this group but since my cancer story seems so very rare (as many of those here are) I thought it might be useful to someone out there with a similar diagnosis. I am a 69 year old very active male and I developed right shoulder pain while lifting heavy objects (rocks) so went to see my primary care doctor. I received a referral for PT and, as a precaution, an X-ray to rule out any fractures. Two days later I received a call that they didn't like what they saw on the Xray so I was immediately scheduled me for an MRI 2 days later. On April 2th I received a call that the MRI showed a growth inside my humerus and that they had scheduled me for a consult with a sarcoma specialist at the Mass General Hospital (I live in suburban MA and was working with a smaller local hospital). My appointment at MGH was scheduled for April 4th. During that consult I was informed that I had Chondrosarcoma of my proximal humerus and needed surgery ASAP. I was scheduled for the operation on April 10th, 2025. Everything was happening so quickly I found it difficult to process all this information and the changes to my life that this cancer diagnosis had caused. The surgery involved the removal of about 50% of my proximal humerus (the tumor was 10cm x 4cm) , reconstruction using a cadaver bone (allograft) and then a reverse shoulder replacement. The 3-hour surgery was successful and now 9 weeks post op I am working with PT to regain full use of my arm. I never had a biopsy because the tumor was only 1 mm away from breaking through the bone cortex and they wanted to get it out. Plus, I understand that biopsies can pose additional risk and the tumor was coming out shortly. Post surgical pathology showed a diagnosis of dedifferentiated chondrosarcoma (DDCS) of my right humerus. Margins were clean on both ends but I was strongly urged to go through an 18 week round of chemo to reduce my risk of metastasis from 70% to 50% as the particular type of cancer that I have is very aggressive and tends to show up in the lungs. There is no clinical data to suggest that this will work because DDCS is very rare and also notoriously resistant to both radiation and chemo but I have confidence in the wonderful sarcoma/ortho team at MGH and I was willing to do whatever it takes to beat this cancer. I am half way through my chemo therapy now. It is difficult but I expect to get through it and hope to be one of the lucky few that gets a few more years. A CT chest scan yesterday showed no metastasis so far. I am interested in learn of anyone going through a similar experience. Particularly since overall survival rates appear to be so dismal for people with this diagnosis. I am also very grateful that the surgical team at MGH were able to treat my cancer without an amputation of my right (dominant) arm. I was told that 20 years ago this would not have been possible. I only wish that there was a more targeted treatment available for DDCS since the chemo seems like such a blunt instrument.

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

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.

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.

MD Anderson got me in so fast via self referral after imaging showed sarcoma in abdominal wall muscle. So impressed with them and looking forward to next steps to just know what to expect. Trying to stay positive!

This whole journey has been hard, and it's barely even begun. I know my doctors are working hard to get the treatment for my Epithelioid Sarcoma started. But it feels like constant delays.

I finally have my lung biopsy scheduled, getting it done on the 29th. Hopefully after that, we can finally start treatment and work twords surgery.

Sleep is becoming almost impossible. And for some reason nothing tastes good anymore. It's a toss up on if it's chemicals from the tumor or stress. But nothing tastes good at all.

I was doing good emotionally for a while. But I took my 6yo to a fun kids fair thing my town has every summer and suddenly found myself sobbing on the carousel. I probably looked crazy to people. But suddenly all I could think about was how much my little boy has had to miss out on because of my health.

I have had my sarcoma for 8 years! My poor baby has never had a mommy that doesn't have cancer. Has never had a mommy that didn't need consent breaks, who could hold him for more than a minute without pain.

I'm furious that I was misdiagnosed, laughed at and ignored 8 years ago. Not just for me, but for my child. He doesn't deserve this. He can't even comprehend what is happening. And I don't know how to explain to him that mommy is going to have to go away for a week for radiation, and then again for surgery. I'm just so angry for my little man!

I think I need support and for someone to tell me my health isn't ruining his childhood. I'm so afraid he won't understand and will grow to resent me.

Hey everyone! Two years ago I (M29) had the misfortune of getting diagnosed with Ewing’s sarcoma. It started in my pelvic bone, plus a metastasis in my thigh. I didn’t hesitate for long and went straight into treatment: first in Turkey, then in Spain. I went through 10 cycles of hardcore chemo and radiotherapy—with little effect. They ended up removing everything surgically and putting in a prosthesis, followed by several more chemo cycles… Finally, the scans looked “clear,” and I thought I was free at last.

At that point, I really felt like a survivor. I was living almost a normal life, traveling between chemo sessions, studying, riding the high of thinking I’d “beaten” cancer and all those hellish months were behind me. But, unfortunately… Six months later, they found multiple metastases in my lungs and vertebrae. Treatment has started again.

The downer

This hit me hard. During treatment, I quit my job, and some friendships just fizzled out on their own. I’m also wary of making new friends—people don’t always react well when they hear about all these challenges. My husband has been the only one by my side this entire time, supporting me, but I can tell he’s really exhausted too. When I was in remission, I made plans and started getting back to normal—job hunting and everything—but right now, it feels like my motivation’s gone. It’s terrifying to think I might be on IV drips for the rest of my life, losing piece after piece of my body as each part fails… And it’s even scarier that treatment might not work at all. I see a psychotherapist and take antidepressants, but sometimes the anxiety still overwhelms me. (Sorry for the gloomy tone)

My question

I know there are folks here who’ve been through—or are going through—similar ordeals and still manage to keep fighting, stay hopeful, and somehow keep living their lives: studying, working, hanging out with friends, finding joy in things. How do you do it? How do you juggle a “normal” life with ongoing treatments, when you’re either in chemo or recovering from it? How do you fit hospital visits, work and social life all into one schedule? Is that actually possible, or am I just fooling myself?

We will beat cancer — or at least stop it from taking away the parts of life that make us who we are

My question is pretty simple. Has anyone worked through their chemotherapy treatments? When I went through the bulk of my treatments last year, I was off of work for ~6 months, but I would often keep my foot in the door to stay connected at work. I’m in education and love being around my students and staff, and being off for another 4-6 months is making me freak out a bit.

Last year, I had 2 surgeries (the second one was due to a recurrence weeks after the first - pretty sure they just didn’t get it all), 30 rounds radiation and then 6 rounds of AIM. I found out this summer that I’ve got 4 mets in my right lung and another in my left chest wall. I just finished round 1 of Gemtax with the hope of a big surgery after round 2/3 if the chemo shrunk/stabilized the mets. I would then finish with the last 3/4 rounds of chemo.

What do/did you all do to stay mentally sharp during this time?

Howdy all,

I'm a 27 year old male who was diagnosed with Ewing's Sarcoma at MD Anderson in Houston in October 2024. Of course, I was absolutely freaking terrified (that first meeting with my doctor was the only time I can remember actually thinking I might pee my pants in fear lol). However, treatment has been going very well and my doctor feels that things are heading in the right direction. I have done 6 rounds of vincristine, ifosfamide, and doxorubicin, 1 round of etoposide and ifosfamide, and somewhere around 30 rounds of radiation.

Last Monday, I met with my doctor expecting to get started on my next five rounds of chemo, but my platelets were too low and so chemo had to be delayed. My doctor informed me that if my platelets didn't come back up, chemo would not be continued. This of course freaked the heck out of me and my whole family, as we thought this meant treatment was no longer an option, but the doctor reassured us that this is not the end of the world and that despite not receiving the extra 5 rounds, my odds were still pretty dang good. His exact words were "If we were having a bad meeting, you would know" and "While I can't say you for sure are going to be fine, I think you're going to be fine."

Also the conversation turned to him informing us that the odds of beating a relapse are very very slim. He seemed to indicate basically zero, though I've since learned that this isn't truly the case and have heard numerous stories of people having recurrences and still beating the thing or at least being 5-10 years NED.

I guess this is all to say that, while things seem to be going good and we didn't have a "bad" meeting, it left us with a really poor taste in our mouths. My family runs on the moderately to extremely (some might say cripplingly or severely) anxious/despairing side, so any and all hiccups are perceived to be essentially casket-shopping. I get my blood tested again tomorrow and I've been super worried about it. My anxiety is also bleeding into my wife somewhat, which is also why I want it to get calmed down, so as not to freak her out.

IDK. I guess I just needed to rant. I would love to chat with someone in the comments or receive any advice/words of wisdom from some cancer veterans out there. Thanks

I've been keeping my sarcoma a secret for 6 months now. But things are getting worse I definitely have no choice but to come out.

Any advice? How did you do it? Did any of you also kept it a secret at first?

Ugh, I just couldn't tell my mom. She'll be heartbroken.

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.

I’am figthing G3 Sarcoma Cancer since I was 23 years old - since then I had bunch of surgeries, chemotherapies, radiotherapies, immunotherapy and target therapy. 5 years passed and this sarcoma getting angrier and angrier - fist size tumor can grow in 2 months anywhere in my body, when first sarcoma tumor grew almost one year to 5x5x6cm on my shoulder…

So a few days ago, I had a cold shower - the second CT scan revealed how things have changed since June 20, when I underwent a major operation that was a huge challenge for the “Santaros” Hospital team.

Unfortunately, the news is not good. Immunotherapy costing tens of thousands has proved to be completely ineffective, same as chemotherapy I had in the spring, which has completely exhausted my body. However, at that time I was still able to work with the bees, and I was working with hives on the rooftops of Vilnius, eager to enjoy what I love while I still can. I felt that I might have to say goodbye temporarily to my beloved hobby, to the Urbanbee.lt team and to the work that was a real part of my heart.

Unfortunately, the remaining sarcoma near the kidney gate (which could not be removed completely) has doubled in size in five months since the last CT test and is now even larger than the tumour (a fist-sized antibody) that was surgically operated in the summer. The sarcoma has also metastasized to the liver, so from now on, I will have to fight liver cancer as well.

I believe that the rapid progression of the disease may have been partly due to organic depression, a condition caused by only one remaining kidney, which was unable to supply the body with serotonin. Psychologically, I feel at peace with the disease, but physically, I was completely devastated for four months: I could hardly get out of bed, I was sweating, nauseous, chilled and vomiting. I could eat only one yoghurt a day - my body was in excruciating agony. I only recovered a little in the evening, because my body was functioning only on melatonin.

However, it is now my third week on SSRI-type antidepressants and they have given me long-awaited relief. My appetite has recovered, and the meal train programme organised by my sister has helped me to get back into a healthy eating rhythm - I eat three meals a day and regain my strength. Finally, I feel stronger and even healthier!

My treatment is also changing: immunotherapy was abruptly switched yesterday to target therapy - pills that cost hundreds, but offer new hope. I am very hopeful that they will stop the tumours from growing. I may need another operation, but that would be an even greater challenge than in the summer, although I already know that I am strong and will not give up. Plus, once the immunotherapy is finished, I won't have to endure that nasty vein-stabbing anymore, as the chemotherapy burned my veins and I was being stabbed 3-5 times before nurse find my vein uufffff.

I wouldn't wish that on my worst enemies, if I had any. I regret that I did not take enough care of my health at the time, but I believe that my story can be a lesson or an inspiration to others. Fight for your health, do not give up if you feel that something is wrong, fight with your doctors and seek different opinions, because many people will reassure you that 'there is nothing wrong with it', 'take a cup of tea - it will go away', etc., which is the most common experience of people with cancer, once they start to suspect their health. I had the same thing when I had a lump on my shoulder - "it's not malignant, you'll massage it out and it'll go away" - and it took me almost a year to get to the point where I could taste blood in my mouth from the pain... So, Take care of yourself and your loved ones - that's the main thing.

I don't know how much more time God has given me in this world, but my heart burns with the desire to live a full life: to start a family, to see the world, to grow old surrounded by loved ones, children and grandchildren. My fighting spirit has not stopped growing stronger, and I have no intention of giving up.

I am immensely grateful to my friends, relatives and all those who are helping me along this difficult path with their support and care. Your help is invaluable.

Sorry for my poor English, but anyways - FUCK CANCER!

Mu friend also set up a gofundme page. I could really use some help, as all the procedures and medicine have emptied my wallet 😔-

https://gofund.me/e016c121

Hey! I'm 55m am dealing with stage 4 dedifferentiated liposarcoma. I'm currently continuing oral chemo treatment. It's been a lot to process. Just wondering if there's anyone else around my age going through cancer who might want to chat or be friends? Would be really nice to talk to someone who gets it.

[Edit for clarity] My post here was meant to be a little bit tongue-in-cheek. I'm married and I have a great support system of close friends and family. That said, there's something different when talking to those of us who are going through this. If any one else is looking to connect, my dms are always open.

[Further edit] I got my diagnosis at the beginning of 2023 and I think I've only managed to "talk" to one other person with the same diagnosis. I think I'm the only patient at my hospital with this condition. Some times I wonder if I'm the only person in my city with this. 😁

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.

In 2023, diagnosed with retroperitoneal liposarcoma. Had surgery in August 2023 to remove 21 cm tumor.

Positive margin left on vena cava.

Not even two years later, "butterfly" like looking tumor growing on the vena cava. Meeting with surgeon on 6/24/25 to discuss surgical attack on the cancer.

Cancer is stupid, annoying, interrupts life and did I say STUPID already?!!!

Anyway, 42 female.

Hello everyone.

I hope you all are doing great.

I am writing this in hopes of finding some reassurance and some tips to manage my anxiety. I am the main caregiver (30M) of my partner (31F), we got the diagnosis of a pubic grade 1 CS. The biopsy reported a grade 1 CS, final pathology report confirmed the biopsy result and showed a complete resection of the tumor, with negative margins (closest margin was 1.4cm), the tumor was staged as pT1a, it was very small (2.4x2.3cm). Everything was a success, all our doctors told us to start rehabilitation, continue with the follow up studies and to live our lives.

The whole process happened between February the 26th and March the 21st. We got a PET-CT scan that showed NED some weeks ago, our next follow up is an MRI for December. Everything is going well, the thing is she gets pretty bad periods, and she has ovulation pain. And we already noticed that when she is ovulating or she is in her period, she feels pain in the muscles around her pelvic floor , that seem to affect her abductors in some way. The doctors have told us that there aren't many cases like hers, and that it's probably a period of adaptation for her body (she doesn't have an implant, the reconstruction was made with a mesh). This pain doesn't limit ver movement motion, it subsides typically in 2 or 3 days.

Every time she feels pain, my brain fears the worst and I have to remind myself that the pain will subside and that everything is fine because it only happens in those moments of the month. The rehabilitation doctor told me "you shouldn't worry about pain, her exams showed NED" and this helped me, but thought maybe I could hear some tips in here.

As some extra notes, I am AuDHD, have GAD and confirmation TOC (besides some probable PTSD from all of this experience).

Thank you for reading and for your support <3

Mayday

I’m sending a mayday, Today my world is crashing down. Told myself, “I’m okay, just fine,” But deep down inside, Trying hard to not let it show I’m breaking down— Just barely holding on.

My rents due, And the bills might be past due. I’m barely making sense While making cents, But that’s okay— I’m flying high, Just barely getting by, As I watch my life Fly right on by.

I’m calling out but calls are not coming through I’m not equipped- to admit I want to quit

Now my health is crashing too, I’m beaten down By a system hell-bent On making us heaven-sent. It won’t relent.

But maybe, Just maybe— It’s a fine day To say you’re not okay. And though it’s getting late, It’s never too late To open the gate, To forget the hate and drop the weight- No, it’s never too late.

I don’t really know where it came from, I wanted to share it.

In need of support, and any positive outcome stories if anyone has any.

My dad has been going through cancer treatment for quite some time.

Growing up, I remember my dad was always getting little skin biopsies done, as he had melanoma. In 2015 or 2016, melanoma was found in my dad’s lungs and he needed to get surgery for it. He had a portion of his lungs removed, and he was doing well for a while. The cancer had come back in 2017, and he had radiation which worked very well and he had no issues, until 2019 when there was more cancer in his lungs. He did immunotherapy and more radiation, and his lungs have been clear since then.

I don’t exactly remember the whole timeline of this next part perfectly, but sometime in 2024, my dad was having severe hip pain and was having trouble walking. In May, he was having a lot of trouble getting around and was using a walker/wheelchair.

He had a lot of scans done but the results were inconclusive, and in May 2024 he had a surgery done for a biopsy. They put a rod in his femur for support and they took some of the abnormal tissue and cartilage in the area. We were nervous it was melanoma, but the tests came back inconclusive as well. It was definitely not melanoma, but the doctors did not know what exactly it was. The biopsy was sent to a specialist at Johns Hopkins in early June, and by the end of June, we found out this was an extremely rare form of cancer called dedifferentiated chondrosarcoma.

We didn’t know what was going to happen, but we remained optimistic. They had discussed doing surgery and removing his leg, but when the specialist reviewed his pathology report in July 2024, he said that he did not believe the tumor was actually cancer. This confused all of us, but we are not doctors so of course we didn’t question it. The specialist said he would monitor my dad over the next few months to see if there are any changes.

Fast forward to December 2024. He had an MRI done, and a meeting with the specialist. They discovered a mass on his adrenal gland, and I cannot remember how exactly this was determined, but the mass on his adrenal gland turned out to be melanoma. They decided to hold off on treating the cancer in his adrenal gland until after his hip/leg situation was figured out.

They determined that surgery was necessary for his hip/leg, but they wanted to try a limb saving surgery first. On December 31st, my dad had a hip, femur, and knee replacement surgery done. He was at the hospital for about three weeks. After surgery, he had a few blood clots in his leg, so they put an IVC filter in and put him on some blood thinners for the time being.

Overall, The surgery went well, and after the surgery, he had more scans done to make sure the cancer was gone.

In January 2025, the cancer in his hip was gone, as far as they knew, and he was on the road to recovery. PT and other doctors appointments regularly to help him heal.

From that point, the goal was to get him up and walking enough so they could do surgery for the melanoma in his adrenal gland.

He had a meeting with the chondrosarcoma specialist in April 2025, and he advised doing a few rounds of chemotherapy to make sure the cancer was gone completely, more as a preventative measure. He also started some immunotherapy for the time being until they could figure out when to do the melanoma surgery.

In May 2025, my dad had surgery for the melanoma, which had grown very much since the initial discovery. They removed one adrenal gland in its entirety, and a portion of another one and some tissue around it as well. He remained in the hospital for three weeks for this surgery as well, due to some post-op complications that were not directly related to the surgery itself.

After the melanoma surgery, he began having hip pains again, but he said while he was in the hospital, one of the physical therapists accidentally dropped his leg, so he chalked it up to some kind of slight injury from that.

I immediately thought of the worst, but I tried not to think like that. He had gotten another MRI done, and his one doctor said it does not look like cancer but rather irritation/bruising. He recommended a biopsy just in case, and I don’t know if I inadvertently thought it into existence, but the cancer did come back. He found out on his birthday, which was yesterday, and they decided that they are going to do a few rounds of chemotherapy, remove his leg, and do a few more rounds of chemotherapy after that.

This whole thing has been a rollercoaster for all of us, and I cannot even begin to imagine how my dad is feeling l. I feel like I have not been a good daughter and I don’t know how to help.

My sister and I are trying to be around more and help out more often. It’s really really hard and I am just feeling awful about this.

Hello everyone, in a span of 2 months my sibling (15M) got diagnosed with a brain tumor thought to be benign meningioma, got it removed via surgery and when it was tested more accurately, the results came out to be mesenchymal chondrasarcoma of the skull. It's incredibly scary right now as everywhere they say the prognosis isn't good but luckily there is no metastasis yet and he's healthy and normal and about to start radiation therapy soon. I've talked to a few people on here battling the same and they've been really helpful, I just wanted to reach out to the wider community and maybe you guys can share your experiences and any advice if possible. I know this cancer is very rare and not a lot of people may relate but thank you regardless.

My MRI results about my suspected sarcoma has been posted on my chart. I have two small children and am feeling like this is a battle I may lose.

FINDINGS: Redemonstrated is the very large and lobulated enhancing mass centered in the mesentery of the abdomen and pelvis. It is difficult to accurately measure on the MRI examination because the pelvis and abdominal portions of the examination are on separate series but measures at least 30 cm in extent. It is T2 hyperintense and T1 isointense and shows enhancement with internal fatty components. Numerous additional enhancing soft tissue deposits noted in the omentum, peritoneum, paracolic gutters, and in the pelvis. Lesion shows mass effect with the bowel displaced around the mass. Findings are suspicious for malignancy such as liposarcoma. No focal suspicious hepatic lesion. Gallbladder is normal. No biliary ductal dilatation. The spleen is normal in size. Pancreas is normal. Both adrenal glands are normal. Kidneys are normal. No hydronephrosis. The uterus is normal in size. An intrauterine device is present. The mass appears separate from the ovaries. A cystic structure is noted in the pelvis on the right superior to the right ovary (series 22 image 18), with intrinsic T1 signal hyperintensity possibly hemorrhagic cyst or endometrioma. Urinary bladder is mostly decompressed.

26M in the US. I was diagnosed in Feb 2021, became stage IV in Dec 2021. Tumor on my liver ablated, 2 small ones in my lungs that are being monitored, and one large one in my femur that lead to the top third of the bone being replaced.

Just wanted to make a post to see if anyone else has experience with this specific sarcoma, and just in general for support. Cheers

Background about myself: young adult; battling with Gastrointestinal Leiomyosarcoma since 2024.

Tumour grew in the upper part of stomach. Discovered due to gastric pain experienced by walking into the ER.

Apr Total gastrectomy tumour size 9.5cm(it grew from 5.8cm to 9.5cm within 3 weeks)->May CT scans showed clear margin->Jun 6 rounds of red devil + Darcabarzine-> Nov CT scans-> Discovered 6 cm tumour disguised as liver cyst(likely it grew 2 months after total gastrectomy)-> Surgery resection 30% of my liver

Current status: On palliative chemo (Trabectedin)+ having regular CT scans every 3 months.

Hi everyone,

I thought of sharing my experience hopefully to shred some light on LMS and its aggressiveness. At first, I did not see a sarcoma specialist and did not advocate for myself as I dont know the aggressiveness of Leiomyosarcoma. Due to the lack of understanding, my tumour in the liver went undetected and I went through 6 rounds of chemo for nothing.

I have been seeing post recently about people asking if LMS can come back after many many years and the answer is YES. There has been reported cases.

I couldnt stress the importance of getting treated by a sarcoma specialist and even so, please do your due diligence by constantly comparing your scans, and highlight to your oncologist for any new growth. A good oncologist/ surgeon will read the images themselves (instead of only the write up by a radiologist) and compare it.

There’s an active LMS page on FB and its quite helpful and informative.

Emotionally, its really a long battle with LMS and I am not out of the woods(I dont think I will ever be. I posted this hopefully I can help someone who is newly diagnosed and as lost as I was a year ago.

Take care.

Hey all I am having a second surgery this time it’s a flap surgery where they will be taking out some tissue and muscle out of one thigh and putting it on the other thigh. I have never been so scared in my life and just am hoping for the best. I am usually a very outgoing positive person, but this is making me bitter and sad and mad all of the time. I have to do radiation later down the road once my flap surgery heals up. It’s been a rough road already with the excision surgery for the sarcoma that was pretty massive on my thigh 25cm by 18 cm by 8.5 cm deep.I have had and a wound vac on with this. I know that there are people that are worse off than me and I will be thinking about you guys just want a little encouragement for this upcoming surgery.