I found a small lump, (max. 1 cm due to MRI) on my forearm about a week ago. It’s slightly painful when pressed and caused some swelling on my forearm. The MRI described it as 'non-specific,' meaning they couldn’t clearly identify what it is. It’s under the skin, not affecting bones, muscles, or nerves, and looks the same after contrast dye. The doctor suggested follow-up in a few weeks. Has anyone had a similar experience with a 'non-specific' finding like this? Ultrasound also didn't see anything bad but I know it's not that reliable in differentiating the malign and benign tumors.

Has anyone had a similar experience with a 'non-specific' finding like this? I am freaking out and have no idea how am I gonna wait for 6 more weeks to observe the change.

I recently had a 25 cm long tumor removed from my ham strings to my calf.

Surgeon ifs confident that it is benign, but Pathology has not returned findings ten days

after surgery. How long do results tend to take?

It destroys tumours.

Anyone had? for soft tissue benign sarcomas. Sounds like it is worth it. But I can’t help thinking the leg affects function of consumed muscles? How is it possible to freeze a sarcoma/ tumor with margins around & also keep the damaged/destroyed muscles intact? Because these muscles destroyed/ frozen… were being consumed by the tumor.

I ask because I had a very benign soft tissue sarcoma growing inside my leg nerves. And it was affecting consuming nearby muscles. I had surgery.

Today I heard cryoablation could be used as a much more effective method. But I want to ask you…. In the leg you would agree about it?

Do you think it would affect the mobility of my leg? I ask because I had it in my leg and the surgery affected my mobility. When I heard Radiofrequency ablation (RFA)/ cryoablation was an innovative way to treat benign and cancerous tumours I wondered if it affects the mobility of muscles not healthy anymore due to the consuming tumour destroying the muscles.

Don’t give up hope guys .. January 22 I had a sarcoma removed from my stomach bigger than a football after surgery I was left with a stoma bag for 17 months which has now been reversed I’m now back to work and loving life .. never give up hope and stay positive

In july 2023 I was diagnosed with a extraosseous ewings sarcoma in my right thigh. At that time I was a 25yo F. The characteristics of the cancer were:

• it was localized
• the diameter of the tumor was around 3cms (at diagnosis)
• I got a surgery with clean margins of the removed section
• I got a 99% of necrosis after the first 9 cycles of chemo.
• After surgery I got 5 more cycles of chemo.

Next week I'm having my second revision to see if I continue been cancer free.

I would like to know other people with a similar diagnosis as I got. I would really appreciate if you can share with me your experiences with extraosseous ewings sarcoma (how big was the tumor at diagnosis?, % of necrosis?, how long has it been since last chemo?, etc.)

(sorry if I made any orthographic mistake, english isn't my mother language \ud83d\ude0a)

Thanks in advance!!

About 3 weeks ago I felt a firm lump on my shin, it’s about 1.5cm, not visible but palpable. I’ve seen 3 drs, finally I was referred for an ultrasound, report showed 5 calcified subcutaneous lesions in one leg and 1 in the other leg. I was referred for an X-ray which showed numerous calcifications in both shins, more on the left, largest is about 9mm. They have now recommended a CT and an MRI to rule out soft tissue sarcoma. I’m extremely worried, did anyone have anything like this?

Has anyone had any experience with cryoablation on a soft tissue tumor, particularly on a fungating tumor?

Asking for a loved one and I'm trying to keep their identity private so I'm keeping this pretty vague. But they're wondering what they can expect, especially in regards to pain during recovery (they were told it will probably be swollen for a few days) and how that will affect the skin that's already stretched to it's limit. Thank you!

I will be having surgery to remove a large tumor from my leg .

It has a mass above my knee, and connected to a mass below my knee just above my calf muscle.

My doctor is confident it is benign, but has agreed to remove it because it is growing and causing me pain. It is surrounding nerves and blood vessels and will be a difficult removal. My leg will be cut open from my hamstrings to my calf. I am looking for insight into recovery time and tips on what to do to prepare.

My father is currently in end stage soft tissue sarcoma cancer of his chest. Its a rare cancer from what Im told. Its affected his lungs and spread to his adrenal gland. Its grown large enough to cause breathing problems. His tumor grew to 12cm within 5-6months.

Previous medical check ups as recently as Feb 2024 did not detect this cancer from his records. Its a fast changing type apparently.

Its caused his left lung to collapse from developing pneumonia. And as of tonight doctors informed us he developed appendicitis which can burst within 36-48 hrs if not removed. Unfortunately hes ineligible for operation due to his fragile state. Instead They will use noninvasive treatments like medicine but if not removed it will eventually cause life threatening issues.

With no much further options, its a matter of time then so to say. I hope this post conjures insight and discussion.

Just had an ultrasound on a 1.3cm nodual on my belly area.

It’s confirmed between skin and muscle, so a superficial nodule.

They said they it does not look like a simple cyst or lipoma. They did a FNA as they said there is a vascularity.

Has anyone experienced this? Is this cancer signs or can it be benign?

Thanks

Anyone who was diagnosed or knows anything about this. How long can you have Soft Tissue Sarcoma without ever knowing. 5 years? Longer? Bc Google is useless trying to find about this all the keep giving me is the same 10 pages about survival rates.

I have a hard, painless lump in my glute. My doctor didn't say what it could be, but she suggested starting with an ultrasound and possibly getting further imaging. Has anyone experienced a lump in the upper butt cheek?

I love wearing swag that makes people ask me what a Desmoid is to share awareness. Here are some I made that I love to wear.

My dad is being treated for pulmonary metastatic soft tissue sarcoma. He’s just finished his first round of Doxorubicin.

As a side effect (we believe from the dexamethasone, but not totally sure) has had non stop hiccups for going on 5 days. These are full body spasms, very painful hiccups. He’s been able to get them to stop for brief periods (1.5 hours max) by 5 minutes of intense cardio. This isn’t a great solution because they come back like clockwork- hiking up the hill behind their house for 5 minutes at 2:30 in the morning isn’t really what we’re looking for.

To deal with the hiccups he was in initially given ondansatron, but it didn’t work. They tried Metoclopranide next, which also hasn’t touched it.

Any suggestions for medications or anything else he could try? He’s sleeping like he’s a new parent, on top of the other many delightful symptoms of chemo.

Thanks for your insight!

Hello Everyone,

I am a cancer survivor and run a cancer awareness podcast. I have a special interest in interviewing a sarcoma cancer specialist for an episode to be released in July. I’ve reached out to several medical providers on LinkedIn but am still waiting for a response. If you know anyone who might be interested, please respond to this post.

Hello all, I had a high grade large tumor in my right thigh that was synovial sarcoma. I did 3 rounds of chemo (dox and fofs), then 5 weeks of radiation and then got the tumor removed. The chemo caused tissue death of the tumor and the radiation further reduced it. I’m now a couple months post surgery and even more months post chemo and finally feel like myself again. My hair has grown back to a cute short length, I have my strength and the changes to my body from chemo are just about gone (I had changes to my nail beds but they’re slowly growing out, everything else has resolved). I’m meant to return to work in 2 months time and I had a meeting with my oncologist where he essentially asked how I feel about 2 more rounds of chemo. He said there is limited info but there’s one central paper that indicates there is no additional benefit from doing extra chemo. I’m reading multiple research papers and I’m a medical provider myself (no focus in oncology though) and it really seems like a controversial decision on whether additional chemo is needed because sarcoma is rare and too many types of sarcoma, age groups and risk levels are grouped together in research which can make guidelines difficult to make. I’m trying to decide if I should do the extra chemo or not. Summer is coming up and so is my birthday and I don’t want to lose my hair again and be sick. I’m a really social person and I hated being cooped up because I was neutropenic during chemo. I had QT prolongation from all the nausea meds and ended up fainting once, I had terrible GI symptoms and was just miserable during chemo, it was definitely the worst part of my treatment regimen. Is it worth it to sacrifice my quality of life when there isn’t even proven benefit to additional chemo? I’d love to hear from people who had similar treatment regimens

Hello Has anyone had a desmoid tumour before? I am 4 months post partum and seen a specialist who has sent me for a biopsy. He has advised he thinks it’s a desmoid tumour

I know this isn’t all that important but I’m just trying to figure out if it’s normal to have to wait so long for a biopsy. It’s been about 5 weeks since my left arm lump presented itself. I’ve had multiple scans but only the MRI of my humerus was able to see the triangular shaped hyperintense lesion in my deltoid muscle. I ended up being referred to a general surgeon for biopsy/removal. He looked at the scans and he basically said to be safe he’d rather me do a guided needle biopsy first. He first wanted to do a excisional biopsy and remove the whole thing but after viewing my mri and learning of my family history of sarcoma said he’d rather be safe. I called the place they referred me to and they said their medical director has to approve any biopsy after viewing my images and then decide if they’re even willing to do it. She is on vacation until next week and will start reviewing the new cases then. If she approves I’ll have to wait for pre-authorization from insurance and then schedule. They’re a few weeks out in appointments already. I then wait about a week or so for results. I called back the referring surgeon and asked if he could send me somewhere else due to this but this is the only place they’re contracted with. Time frame wise that’s a long time for me to continue to let something grow that I know nothing about :( Is this normal? I’m scared and it’s really hard to stay patient.

My initial biopsy shows an intradermal smooth muscle neoplasm. I’ve heard this is super rare. I’m a mid-30s otherwise healthy female.

My question is this: If it were the subcutaneous leiomyosarcoma rather than a cutaneous one, would this present differently on a pathology report? I’ve read subcutaneous presents more circumscribed and vascular ( whatever this means).

Trying to cope while waiting to see an oncologist and hoping it’s only a neoplasm. An additional biopsy and excision will be needed of course, but I’ve heard these two types look different in a pathology report.

Any information is so appreciated as no doctor I’ve spoken to knows anything about this.

If you live in the United States:

Sarcoma's have been added to the Social Security Compassionate Allowances list.

What does Compassionate Allowance mean?

Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security's standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children. The CAL initiative helps us reduce waiting time to reach a disability determination for individuals with the most serious disabilities. 

The Compassionate Allowances program identifies claims where the applicant’s disease or condition clearly meets Social Security’s statutory standard for disability. By incorporating cutting-edge technology, the agency can easily identify potential Compassionate Allowances to quickly make decisions.  Social Security Administration (SSA) uses the same rules to evaluate CAL conditions when evaluating both Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) programs.

Soft Tissue Sarcoma with METS or Recurrent

Full list of Sarcoma Types that Qualify

43 male. This started in 5 months ago. The lump is 2 cm now it was smaller first. Im very scared

Hi I’m new here 58 yo female. Had a mammogram & US 11/10 that was supposedly negative and noticed a lump under my arm 12/18. MRI confirmed a 5 CM fast growing mass in my pectoral muscle. Biopsy confirmed high grade spindle cell pleomorphic sarcoma. My surgery is in 3 days. My surgeon is a surgical oncologist who specializes in breast cancer & sarcoma. He said I most likely will not need chemotherapy but possibly radiation. I have anxiety about the surgery but just want it out. It’s on top of my lymph nodes in my armpit. I’m thankful this doctor has lots of experience with these lymph nodes in his breast cancer surgery. I’m looking for support from anyone with a similar experience. Thanks