After having a resection last June, clear margins, and clear scans for a year, a 2.7 cm x 1.9 cm nodule based in the pleura(?) along the left heart border as well as a 1 cm nodule. Tbh, idk if I could do chemo again. Mega dose AIM almost killed me

Has anyone with synovial had a recurrence? If so, where? How has it panned out? What was your treatment regimen?

I have Epithelioid Sarcoma that is almost 9 years old. (It was misdiagnosed any only just found)

My new oncologist is supposed to be the leading expert in our state on sarcomas. She confirmed that it has metastasized in my lung, along with a new tumor on my left elbow.

They want to go travel to the hospital near my oncologist on the morning of the 8th. They will be putting a port in my chest and doing scans to see what has changed since my last one last month. Then I will be staying for the week in the hospital while they do my first round of chemotherapy. (I have extremely complex health and they have no idea if I could react badly)

I'm so nervous. There is so much to prepare. Especially for my little boy.

What have been your experiences with chemotherapy? What is something smart to eat before, since I know I will probably get sick.

Just so much to think about and not much time.

I’m feeling a little worried but maybe this is self sabotage. For reference I am 23(F) and I had a lumpectomy of an intermediate grade myxofibrosarcoma from my breast. The margins were narrow (one was 0.1cm). The care team has recommended that we don’t do radiation because of the possible side effects and that we don’t do a mastectomy because of my age. I guess the idea is we watch carefully and then do a mastectomy if it recurs. Has anyone ever had a similar situation like narrow margins and no further treatment?

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?

I got the biopsy results back and the mass in my abdomen is officially diagnosed as an Ewing’s sarcoma. Anyone else? I guess I’m just here for some solidarity, any tips on making it through all this, and because I don’t want to fall down a google rabbit hole. I hate this and also nothing feels real

I had my toe amputated 20 days ago to remove a tumor of extraskeletal myxoid chondrosarcoma and the pathology report showed negative margins but they were thin. The pathology report says Distance from Tumor to Closest Margin: 0.1 cm. I saw my radiologist today and he gave me the option of doing radiation. It would be 30 sessions over 6 weeks. He also said there is a chance of major side effects that would end up having me do surgery again. I asked him the percentage odds and he said he would estimate a 10% chance of side effects severe enough that would lead to surgery again. There is a chance that there is still microscopic amounts of cancer left in my foot so I'm not sure what I should do.

I am getting scans every three months after a recurrence of undifferentiated pleomorphic spindle cell sarcoma. So far over the past several months, there has been no evidence of recurrence. However, I have this really weird lab work and it shows that it’s been abnormal for like a year and it’s getting worse. When I looked it up it all said it’s a sign of cancer and it could be leukemia, lymphoma or multiple myeloma. when I checked like on the doctors report, they had not reviewed the lab work it said. So I just went in August and abnormal again so I’ve sent messages to the doctor to the nurse practitioner saying please just let me know about this lab work. Is it a concernand no one will contact me back I don’t know what to do from here.

Early this June, I was informed I have a small tumor that’s been growing slowly in my hip’s greater trochanter for over 3 years.

I’ve been having hip pain off and on for years. Pain has always been located closer to groin, and not my greater trochanter. Had a CT scan for a separate issue back in January 2022. Apparently this tumor was present then in that image years back. Just a bit smaller. However, I was never informed.

Had an MRI this May because the hip pain has been so hurtful. Clinicians saw the tumor and finally told me there’s this lesion.

Lately my hip joint keeps burning. Feels almost like battery acid is on a very low boil inside my hip joint. Pain ranges from a dull ache to a stinging, pinching, or sharp pain.

Pain worsens with activity, stress, lack of sleep, and weirdly, ovulation and PMS.

Doctors informed me the rest of my hip looks normal. No sign of bursitis, impingement, tears, inflammation, or bone issues of any kind. Only thing of note was really just this tumor (lesion). But doctors don’t think the tumor is necessarily what’s causing me pain. 😵‍💫 That’s a bit confusing. They told me the tumor doesn’t look malignant. I don’t know, I just have a bad feeling.

Hoping this tumor is benign and it is the cause of my years long pain. A bit freaked, and it’s tough not knowing.

34/f and 3 months ago had a c-section, within 24 hours of the operation a large lump appeared on my neck. The OBGYN thought it was from stress because my head was turned to the left the entire c-section dry heaving. At my 6 week appointment it didn’t go away so they sent me to general surgery. General surgery did a CT which lead to a biopsy with “two passes”. The biopsy came back inconclusive even when they sent it out to a bigger hospital. The general surgeon is sending me to a general oncologist who did a fellowship at MSK. The general surgeon told me he thinks I have Desmoid tumor…I can’t see the oncologist until mid September which is kinda driving me nuts. I do plan on asking for a referral to a sarcoma hospital I live on the East Coast so I have a few over here. Just wondering if anyone has dealt with this type of tumor? Or has anyone had their biopsy come back inconclusive? I will say I am annoyed it was inconclusive. When the doctor was doing the biopsy he did mentioned I have abnormal spindle cells and also an abnormal cluster of cells. They were taking the samples and looking at them under the microscope with me laying on the CT table. So I was confused on how they couldn’t get an answer. The doctor even went back in and took more because he said it would have to be sent out for more testing. The soft mass tumor is sitting above my first rib and is sticking out my neck.

Hi all, I've recently found out that I need another biopsy carried out due to 'the samples retrieved don't represent the full mass'. I received no further information on what they dont or do suspect so far, and the nurse on the phone either couldn't or wouldn't go into further detail.

Has anyone else experienced this? Just feeling a bit deflated at the minute due to the timescales of waiting around not knowing anything.

Really anxious about the repeat biopsy as well. Even though they used local anesthetic, it was still really uncomfortable/painful.

Thanks again as always for reading

I want to pass along a huge thank you to this community. You all helped guide my family during a time when things were really uncertain regarding my brother's diagnosis. Unfortunately he passed away just over a month ago after a very tough battle with Synovial Sarcoma.

I can't offer much to you all besides support but I did want to share our experience with MD Anderson- Main Campus in the hopes that it helps someone else down the line.

Dr. Vinod Ravi was terrible. His communication skills leave much to be desired and he genuinely didn't seem to care about his patients. Nate was his patient for just under eight months and only met with him three times. He would not answer questions that we had, and did nothing to expedite Nate's treatment (i.e. getting MRI's scheduled took two weeks to just get a scheduling call because he would fail to send in the order, it ended up taking my mom calling and demanding answers before he would act) I firmly believe that Ravi knew the chemo wasn't working by his 3rd cycle and still put him through an additional 4 pointless rounds of Doxorubicin.

Nate would have scans and we would hear nothing about the results, we only found out he was dying because his MyChart had the results uploaded. A family shouldn't have to Google and use ChatGPT to figure out what is going on. Ravi never once informed us that he was dying, we figured it out on our own and a nurse confirmed it.

About a month before his passing, Nate had been admitted to MDA but had an onsite appointment scheduled with Ravi. He never stopped by his room, nor spoke to us again. He just no showed on the appointment. He would drag his feet on making any decision no matter how small. Dr.Patel was the on rotation doctor for the majority of Nate's final hospital stay and he even mentioned the lack of urgency.

Dr. Patel was genuinely wonderful and did a lot to help us as a family, understand what was happening. The rest of the staff at MDA was wonderful, the nursing team was exceptional and I am thankful for essentially everyone. From the transport team, the nurses, cleaning staff, to the hospice floor staff, our experience was great aside from Ravi. You can truly see how much everyone there cares about what they're doing.

Thank you all again for your support and for taking the time to help out our little family. I'm here if anyone has any additional questions. I'm an open book.

Hey all, my nine-year-old niece has osteosarcoma. My brother wanted to do some research on the NCCN website but they only give him truncated versions of research articles because he doesn't have an NPI number.

Can anyone help? He needs these pages.

NCCN Guideline Details: OSTEO-B on Incomplete Thoracic Surgery The OSTEO-B: Principles of Surgical Management section of the NCCN Guidelines for Bone Cancer (Version 2.2025) provides critical guidance on surgical interventions for metastatic osteosarcoma, particularly thoracic surgery for pulmonary metastases. Below are the specific details relevant to incomplete thoracic surgery: • Complete Resection (R0): OSTEO-B (page B-2) states that surgical resection of metastatic sites, including pulmonary metastases, must achieve negative margins (R0) to improve survival. Thoracic surgery (e.g., thoracotomy or video-assisted thoracoscopic surgery [VATS]) is recommended only when all metastatic lesions can be fully excised, offering 5-year survival rates of 20–40% in select patients with resectable disease, as supported by studies like those from the Cooperative Osteosarcoma Study Group. • Incomplete Resection (R1/R2): OSTEO-B (page B-3) explicitly classifies incomplete resection (R1: microscopic residual; R2: macroscopic residual) as palliative, aimed at symptom management (e.g., pain, hemoptysis, or respiratory distress), with no survival benefit compared to non-surgical management. The 5-year survival rate for incomplete resection drops to <10–15%, equivalent to chemotherapy alone, instantly worsening prognosis by eliminating curative potential. • Asymptomatic Patients: OSTEO-B (page B-3) advises against surgery in asymptomatic patients unless complete resection is feasible, due to risks such as reduced pulmonary function, surgical morbidity, and lack of survival advantage. For unresectable disease, systemic therapy or non-surgical local control (e.g., SBRT) is recommended. • Supporting Sections: • OSTEO-4 (Metastatic Disease at Presentation, pages 4-5 to 4-7): Reinforces that incomplete resection is palliative, with no survival benefit, and recommends chemotherapy (e.g., MAP, cisplatin/doxorubicin) for unresectable disease, with reassessment for resectability. • OSTEO-5 (Relapsed/Refractory Disease, pages 5-3 to 5-4): Similar guidance for relapsed metastases, prioritizing complete resection or non-surgical options for unresectable disease. • Patient Guidelines (pages 45–47): Clarify that surgery for metastases in asymptomatic patients is not recommended unless complete resection is possible; otherwise, chemotherapy is prioritized.

Thank you 🙏🏼

Good evening, I recently read this post on LinkedIn by Karin Sanders from the Princess Máxima Hospital in the Netherlands. She found that CIC dux 4 sarcoma is sensitive to MCL-1 inhibitors. This sounds very hopeful for the future 🙏 We sent Karin Sanders a message asking if they could do anything for my girlfriend who has CIC dux 4 sarcoma.

Does anyone has any experience with MCL-1 inhibitors? Thanks 🍀

Hi friends. So I just found out a couple of days ago that I have cancer. They are saying they are treating it as a low grade sarcoma found on my right chest wall. It was first noticed and in 2018. I won’t be able to see my oncologist till October because of insurance.

The specific for it all is Ewsr1::pou5f1 And my Dr kept saying it’s a unique case. I’m just wondering if anyone has ever gone through something like this or knows of someone. My head is just running and not in the best way.

Hi What is the genetic test for Ewing’s sarcoma? Does anyone here know how this test can help us, and is gene therapy effective? I hope someone who has tried this type of treatment can answe

Hi everyone, My mom (58F) was recently diagnosed with undifferentiated pleomorphic sarcoma (UPS) in her leg. She had a wide excision surgery, the margins are clear, and the pathology came back as grade 2. She will be starting 6 weeks of radiation soon.

Our surgeon suggested we consult a medical oncologist after radiation, but we are really hesitant about chemo. As of now, her scans are clear and there’s no sign of spread.

I’d love to hear from others in similar situations:

For UPS grade 2 with clear margins and no metastasis, were you (or your loved one) advised to take chemo?

Did anyone’s doctor recommend skipping it in this scenario?

What factors made your team lean one way or the other?

We just want to make the most informed decision without putting her through unnecessary suffering if the benefit is very limited.

Thanks so much for sharing your experiences 🙏

Hey friends,

I was diagnosed with Nonseminomatous Testicular Cancer in January 2023 after a range of symptoms prompting an ultrasound. Tumor markers came back elevated. Had a right orchiectomy a few days later, and the biopsy showed mixed components of embryonal carcinoma, yolk sac tumor, and teratoma. While my tumor markers subsided, they started rising soon after, leading to 3 cycles of BEP that summer.

I have followed the strict protocol of CT and blood tests ever since. However, last month, just before my two year milestone, a CT showed a new, lone 2 cm growth in the retroperitoneal lymph nodes. LDH and AFP have increased but remain in the normal range. The assumption is this is probably teratoma and we can settle the score for good with a PC-RPLND surgery. It's scheduled for next month (9/8).

Here's the problem—while waiting for my surgery, I've had pretty regular lower back pain, increasing blood pressure, and then discovered a small bump on my thigh. I thought it was unrelated to the cancer, maybe a blood clot or something, but after an ultrasound last night, they found a solid superficial heterogeneous mass, measuring 3.3 x 0.7 x 2.7 cm. The mass is hyperechoic with a hypoechoic center and vascularity, suggesting a new, malignant tumor.

I am at a complete loss here, as I have found only one reported case in the medical literature of testicular cancer spreading into soft tissue of the thigh instead of the usual sites (lungs, brain, etc.). Instead, I am reading across the board about soft-tissue sarcoma, which often appear in the thigh and retroperitoneum. And because TC surveillance protocol does not scan the legs, we have no idea how long this tumor has been in my thigh nor if it predates the tumor in the retroperitoneum.

I am waiting to hear back from my oncologist, which (as most of you know) can take days if not weeks in our medical system. I am struggling to find any evidence of this being testicular cancer online, and instead am seeing a lot of evidence of soft-tissue sarcoma. Is it possible that my retroperitoneal tumor is not TC but an altogether different, new cancer? Wouldn't having my PC-RPLND surgery now be the wrong approach if this were the case?

While the next steps would appear to be getting a biopsy of the tumor in my thigh, I am so familiar with TC treatment that I am wary of biopsies—they say it could spread the cancer even further. My PC-RPLND surgery is two weeks away. I have no idea what to do! Does anyone have experience or knowledge of situations like mine?

Does anyone know of a stronger analgesic? The medications prescribed by my doctor are not effective for managing pain from metastatic cancer

How long have you been sick after a VDC/IE treatment? My girlfriend has now had her fifth treatment (VDC) and has been sick in bed for four days... We're worried

Hello, my mother (59 years old) is diagnosed with Undifferentiated pleomorphic sarcoma in the right thigh. Tumour grade 2, size 13 cm. We got the tumour removed with clear margins and pet doesn't show it anywhere else. We are planning for radiation starting next week for about six weeks. I would really appreciate if anyone could share any similar stories because we are really scared of what can lie ahead. Also we don't know if chemo would be given so any similar stories or opinions would be helpful. Thanks.

We’re honoring Andrey Ivchenko, SAG Award-nominated actor and sarcoma survivor, at the Stand Up to Sarcoma Gala in New York City this September. Andrey is best known for his unforgettable role as Grigori, the formidable villain in Season 3 of the global Netflix hit Stranger Things.

If you’re a sarcoma patient or survivor and a Stranger Things fan, your story could help us celebrate him and the resilience of the sarcoma community.

Fill out this form to participate: https://form.jotform.com/SFA_CureSarcoma/stranger-things

Does anyone have any experience with sarcomas in the breast? I just had a lumpectomy of the tumour (3.5cm) with clear but incredibly narrow margins (0.1cm). They designated it as intermediate grade. I also have a TP 53 gene mutation. Now I’m waiting for a referral hopefully to a sarcoma specialist. Everything online is scaring me and this has been devastating news. I was 22 when I found this - now 23(F).

Hi friends,

We (my boyfriend) are hoping to engage with Dana Farber and expand our care team. Our rationale is based on their expertise and access to the latest research.

Wanted to see if anyone had any tips or recommendations for providers before we start the scheduling process.

My boyfriend’s cancer doesn’t really have a name, basically atypical neoplasm/STS with GLI-1 rearrangements. He’s currently on Votrient and doing well with it, but we just want to stay abreast of the research and make sure he has a good plan in place in case a new strategy is ever needed.

Thanks!

Just looking and haven’t seen a post in two years. Is anyone out there who has been diagnosed with synovial sarcoma ?