Sarcoma: A Rare and Deadly Cancer

Pediatric Oncologist and Sarcoma Survivor discuss this rare form of cancer: the signs, symptoms, diagnosis, treatment, as well as patient/survivor perspective. The video was produced for RIS by Jeff Fuchs of Northern Lights Video.

[@7980flh]

62 year old male. Very large Sarcoma in my left thiegh. Start radiation on Tuesday. 25 sessions. Then surgery. Please pray for me 🙏. I'm a little anxious and nervous.

[@winniemejia8695]

❤️I will pray for you. I will pray that the radiation shrinks the tumor, and that the surgeon is able to remove all the remnants when it’s time for surgery. Most of all, I will pray that you feel God’s presence to bring you peace and comfort during this difficult time. He will get you through!

[@7980flh]

@@winniemejia8695 Thank you for your kind words.

[@alishayazzie1536]

Just prayed for you. All will be well❤️🙏

[@kat-nd9pn]

@@7980flh how are you now?

[@7980flh]

@@kat-nd9pn 7 more radiation treatment's to go. Surgery is July 20.

[@johnjacobson9528]

Wife had lump growing in Palm of hand. First surgery to remove, biopsy came as malignant fibrous histiosarcoma. Needed to have two fingers and part of hand removed. Considered stage 3. Thank God, it's been 23 years ago.

[@justphysics9545]

What is age of your wife

[@laserlithuanian]

very inspiring

[@8hopper7]

I have had Soft Tissues Sarcoma twice one behind my knee and then my lung! I am currently 9 months NEd

[@JP-nf9lk]

@Anonymous no evidence of disease?

[@ThePrettyeyes341]

wonderful to know! Good for you.

[@2SweetShanae]

How did it feel in your lung

[@ThePrettyeyes341]

What treatment did you do?

[@bryleelatham4645]

Awesome 👍

[@chantellewoods31]

My daughter had no symptoms until it was too late I always pray I noticed something I never thought in a million years she had angiosarcoma a rare cancer. Everyone thought she had a bug . Doctors didn’t know for 6 months. My daughter has passed now 11 years old 😩 it started in her liver.

[@Peirithous]

💙💛So sorry for your loss💙💛

[@margaretskinner6972]

Thats terribly sad im sorry you lost your daughter. My daughters ‘lump’ in her liver they think is a hemagioma. She has alot of problems feeling unwell after eating.

[@Suzi195]

🌺

[@justphysics9545]

So sorry to listen that

[@JessicaFletcher-nn5ss]

Oh my god so sorry. I hope you're doing alright. That would destroy me. Rest in peace little girl xx

[@kathyerb3134]

Thanks for sharing your story Sarina. So happy you are doing so well now.

[@wed8909]

as your name sarina sarcoma😅

[@tonydefreitas2114]

thankyou for sharing your story . wishing you all the best .

[@elliotbigland4300]

No no no wish badness

[@reidchambers2521]

She is so incredibly lucky that It didn't metastasize to the lungs.

[@sylviawang434]

Thanks for sharing! God bless you and guys here!

[@pam164]

Dan off Pweetoms died 2 half years ago at 33 with the soft tissue Sarcoma it just was relentless was so sad to watch him decline

[@susanthomas5464]

I followed his journey with Sarcoma .Dan was so brave and fought with everything he had xxx

[@catblue7065]

Yep, I followed his story, as well. He was captivating.

[@leonardofaria3500]

what type of sarcoma ?

[@pam164]

@@leonardofaria3500 I don't know it was in his muscles then went to his main organs.

[@nanernaner6561]

​@@leonardofaria3500 he had an extremely rare and incurable type. Sarcomatoid Carcinoma. I think he was the 46th person who had it

[@suetruter8086]

I've had a huge lipo sarcoma in my thigh in 2006. In 2017 it reappeared next to my knee. A lot of surgery, a lot of pain and financial ruin. That's the sad part - you survive cancer but then struggle to survive daily. Both were in my right leg. In the process my knee got damaged from surgery, MRI's and radiation. After a knee surgery it got septic. Another surgery. I need a knee replacement that my medical aid won't pay because it's not covered. I'm on crutches for just over 10 months, with daily pain. Also lost my job for being too long of work with the cancer and the knee. Not in a good place now. Need to continue to pay medical aid just so can go to a better option in new year to cover knee replacement. Basically just have 8 months worth of money to survive financially. Can't work with this constant pain. Radiation caused swelling, my lymph draining at my knee doesn't work and got permanent nerve damage in the front part of my foot. It's appalling to me that doctors and the medical aid (those I dealt with) do the work, but there's no help in the form of plain helping someone out of humanity. I survived twice now, but my life is in chaos. 😥

[@ginabarrows3958]

🙏🙏🙏🙏🙏

[@sfenn73]

I am so sorry Miss Sue! Cancer stays the treatments do more damage than the cancer. Bless you and there is always hope

[@suetruter8086]

@@sfenn73 thank you 🙏

[@suetruter8086]

@Diamond Thank you for asking. Still the same.

[@margaretskinner6972]

How are you going now sue?

[@acxezknightnite1377]

“23 and healthy”

[@vivianjones5904]

God bless you!

[@Shellyshocked]

I've been begging for an mri for a very, very long time. I have pain everywhere in my body. It took me having a visible lump on my leg to finally convince my doctor to give me a referral to someone else. They did x-ray, but it only showed arthritis and bone spurs. They finally did an mri and found a 5 cm mass in my leg. I now have to go see another specialist because that one doesn't deal with synovial sarcoma or anything like that. I've been tossed like a football from doctor to doctor. I will finally see the orthopedic oncologist this week. It only took 3 months to get in to see him. I've been complaining for years about the pain.

[@laceybanter5937]

How many people in the US die because of their insurance or lack of insurance?

[@bevblackett1340]

Wishong you the best i had it but ok now very painfull

[@abigailh7715]

Vocal fry is off the charts here

[@kellykerouac2615]

I know! It's distracting and makes me uncomfortable.

[@lisabethdavis2280]

I thought I was the only one bothered by this.

[@ZachariahTaikon]

I have a rare soft tissue sarcoma cancer, I am really hoping I can find someone who also has it. It’s called Fibromyxoid sarcoma. please if you have this cancer it would be nice to have someone to talk to. And if you have this diagnosis recently, don’t panic about not finding it on any cancer page! I found that too!

[@prudencemmantuthulo5724]

Hi, can I be that friend, I was diagnosed a month ago with malignant sarcoma. I hae accepted and ready to face it head on

[@mercilee2630]

I was diagnosed with arm unspecified sarcoma. Went 3 surgeries and followed by radiation . It is now recurrent. I am sacred too . I don't know what is next for me .

[@user-nu2pp1gu8b]

My brother is diagnosed with arm sarcoma do you want to transfer information

[@bric3089]

My docs r tryna ignore my symptoms saying o well get to that later. Ive had so many pains that r strange and just nothing..like they dont want to work nor my imput on what im experiencing snh. HELP GOD

[@chayamiriamweisman3733]

My classmate had a tumor in her elbow that was "benign." She had shoulder disarticulation for synovisl sarcoma. She died. That benign elbow tumor was synovial sarcoma.

[@ninjanicnic]

Chemo Brain is just low B12 as it is wiped out with stress and the actual treatment ,most will need loading doses or at least sublingual along with a good B complex . Magnesium and vit D should be optimal \ high range also to feel well .

[@radicabalkaran4250]

Hi my daughter experience o just like your and now she is at stage 4 and the dr said ř they will have to amputate her leg

[@andrewmundie7656]

I had sarcoma soft tissue type on the top of my thigh had to go through chemo and radiotherapy so they could shrink the tumour so it was easier for the surgeon to surgergily remove

[@carolinaherera8138]

same here

[@adrianebaldenegro]

I have a painful lump in right top thigh. It has grown in 2 yrs.

[@margaretdownie4407]

Went to the doctor last summer 23 with lump on the back of thigh, said it was lipoma. Went bk to doctor (different doc, because i moved) went to doctor on Wednesday this week (may 2024), she felt it and it was sore when she was pressing on it, then she measured it and it is 11cm long by 8cm width. Now am waiting to see specialist, am in the UK.

[@user-bg3bl5yv8z]

My 18 yrs old son got osteosarcoma right proximal tibia surgery sep22.but now reoccurring as metastasis.canyou give opinion .we are in india.tamilnadu.

[@murdershe......7378]

It just seems so wrong that insurance plays a part in a decision over when to seek medical help. As a European it is just so foreign to me, if I have an issue however small I see my GP within a day or two or go straight to a walk in medical center or if it is serious straight to the hospital where you are seen within an hour or two and it goes from there if you need further medical help.

[@nancyreeves4961]

I laughed out loud at the "inconvenient" diagnosis. I was diagnosed with breast cancer in 2016 - and inconvenience really was how I felt about it. I'm the 5th breast cancer in 4 generations, so I expected it - but it was really inconvenient that it came when it was. Now I've been diagnosed with sarcoma. It's not really inconvenience I'm feeling right now . . .

[@shazee4736]

How are you doing now and what are the treAtments

[@nancyreeves4961]

@@shazee4736 Done with all of the surgery (assuming no recurrence). I had three surgeries: the initial "oops" biopsy, when no one but me expected it might actually be cancer (I'd been watching since 2014), the local wide excision (the goal is to take the entire tumor + ~1 cm margins) covered with a cadaver graft to protect it long enough for pathology to thoroughly analyze the excised tissue, followed by replacement of the cadaver graft with a partial thickness skin graft from my thigh. The process took from Nov 4 through Dec 29. I've decided not to do radiation. It would moderatly reduce the likelihood of local recurrence (from in the ballpark of 20% to in the ballpark of 10%), but would not direcly impact the chance of long term survival. The tradeoff for the reduced chance of local recurrence is accepting some immediate disability (from the damage to the muscle and tendons by the radiation). I have nearly full function in my right arm/hand (some pain - but reducing as the remnants of surgical swelling go away). So I've decided to wait, keep my fully functional arm, and and let it prove itself prone to local recurrence (or not). If it recurs, I will have disablity from the surgery anyway- AND - it will have proven its nature. At that point it may make more sense to do both surgery and radiation. I caught it early enough that no one seriously suggested chemo. (Most of these aren't even evaluated for the potential to be sarcoma unless they are golf-ball sized; mine was marble-sized.) So - for the foreseeable future it is largely watching closely for a recurrence, scar massage to soften the skin graft, and possibly a hand consult if the carpal tunnel symptoms that the surgery seems to have created continue to linger.

[@Lanika1979]

I hope your doing well

[@saiyedashik7701]

my little 18 year old sister diagnosed with miloyed sarcoma & blood cancer, she currently on cemo therapy. how are you doing now? @nancy reeves.

[@nancyreeves4961]

Still NED. My next scan is in a litle over a week.

[@user-gh6ki6zn8k]

My wife died of intra abdominal spindle cell sarcoma at the age of 50. She had excessive bleeding during periods but doctors said it was normal as she was approaching menopause. It was during the covid lockdown time. In Jan 22 she complained of pain in the stomach. By the time it was diagnosed as intra abdominal spindle cell sarcoma the tumors grew very big. There were 3 big tumors occupying the entire abdominal and pelvic cavity. She underwent emergency debulking surgery. After 4 cycles of epirubicin and 1 course of sorafenib her condition worsened and died.

[@informedpantry6257]

I’m so sorry.

[@chayamiriamweisman3733]

I am so very sorry...

[@ninjanicnic]

What ARE the newer treatments ?

[@adrianebaldenegro]

I go in for an ultrasound on top of right thigh for a mass. Its painful and has gotten bigger. Im scared!!

[@nsbioy]

An insightful story. Thanks so much for sharing! One question. Was the treatment -and ultimately the outcome - influenced by the type of insurance you had? A colleague of mine is a survivor, but he'd had bills totaling over a million dollars, but also one of the best health insurance coverages possible. Otherwise he would have been financially ruined.

[@marypevitt174]

I live in Australia, &I had liposarcoma, I had 25 bouts of radiation, operation, 6 blood transfusion, CT scans , I'm in remission & I still have CT scans to keep an eye on me, it's been almost 2 years ,I'm on a pension, I can't. afford health Insurance, and all it cost me is $6' 60 for my prescription, we have one of the. Best health care services,i was treated like I was the only patient, with all the Cate of a princess

[@suetruter8086]

@@marypevitt174 you are very fortunate. I'm in South Africa, also had liposarcoma twice. The difference is, I lost my job and is financially ruined.

[@marypevitt174]

@@suetruter8086 I'm so sorry, I pray that good health & good fortune comes your way

[@suetruter8086]

@@marypevitt174 Thank you 🙏

[@sumiyabegum8837]

​@@marypevitt1740:15 ক😮😮😮স😮😮খখখ্যূগগঙঢগঠভ

[@brlog6758]

Wishing every cancer patient asap recovery and only great news!!!

[@annettesh75]

I was diagnosed with MPNST in Aug 2020. I am wondering if this woman has had a reoccurrence.

[@reidchambers2521]

I wondered the same.

[@elliotbigland4300]

Help help me please god I pray

[@Bambotb]

You have it as a bodybuilder too ?

[@srijitaroy-pathfinderhazra8037]

How are you now?

[@olyacarell6434]

God's a figment of the imagination

[@lacreme7955]

God help you don't worry

[@justphysics9545]

God is with you always

[@user-pu5ys9he1z]

Can I ask I got injured a while back , I was left with a what the dr said was a hematoma but it has got bigger over the yrs , I’ve now have severe pain in my knee Do you think it could it be Saroma ?

[@elliotbigland4300]

Id ive had an ultrasound on a small chest wall lipoma could they have mistaken it? Lipoma shud not hurt this much? It hasn't got bigger

[@amyong4677]

Get it removed.

[@dorindaokeeffe9252]

@@amyong4677 may he Rest in peace

[@loisroberts2216]

My grandson I raise has ewings sarcoma spinal, cord cancer I,side the cord it his second time it is bad it's in his bone in his spine. We are told chemo he is on will not penetrate the spinal CORD we are only 1 month in treatment. If u know of a treatment that would save him please let us know. He could not walk good and surgery was done but cancer was not all removed . He has only I -5 day chemo. We are trying 1 more 5 day chemo if not working he will stop chemo. It started at age 11 then he won the first fight went 5 yrs but returned in April 27th 2021 .

[@Ilostmyshoesagain]

My sister Is going thru this right now she's had 5 radiation treatments so far I pray she's gonna make it thru this she's partially paralyzed right now

[@user-gg7qi4um2q]

Some of your comments are so rude. This is a young 23 yr old gal who felt like she was well and healthy like many young people feel. This is her story to help others in similar situations. If you didnt like her story you should have quit listening. A lot of people do get cancer younger - my great niece suffered with cancer from 2 yrs old to 11 yrs old when she past. My niece died of breSt cancer age 69 and my daughter age 61 has been battling breast and lung cancer. suffered

[@adewunmidamilola3704]

I was diagnosed of soft tissue sarcoma of the back but can’t get surgery now cos of covid 19.

[@ThePrettyeyes341]

hang in there. my brother went to Atlanta from Texas and the morning of his surgery , it was cancelled because overnight influx of Covid patients. About a week or so later he was called back and had his surgery. This was back in March. God opened the closed door for my brother.

[@johnd3540]

How are u now?

[@adewunmidamilola3704]

@@johnd3540 I later had the surgery and went for radiotherapy some months later. Am better now. Thanks so much

[@johnd3540]

@@adewunmidamilola3704 thank god so glad to hear that.

[@theeggtimertictic1136]

​@@adewunmidamilola3704do you mind me asking where it was on your back? My daughter has a lump on lower back to one side.

[@gvsf5946]

I went in recently with pain in my left knee it would buckle, went to have an MRI and that is when they found a 4.3 cm mass, then went to Ortho he sent me foe another MRI with dye and with almost two months it grew to 5.1 cm and it came back as enhancing /invade sarcoma, and they sent me to a ortho oncologist which he sent me CT and thank God it has not spread so now I just had a Biopsy and the mass is attached to my nerves that it gave me such a electric shock down my leg to my foot two days later I still feel the shocks, I am very anxious to see the report. Does anyone know if an MRI is accurate in diagnosis?

[@7980flh]

Mari's are very good tools.

[@patsyhay9592]

Ask for a pet scan

[@maryannepereira6549]

I've been to two primary care doctors and they both tell me why do you want to get it checked out if it's lipoma it would not bother you now it's getting bigger and the doctor still don't refer me to a specialist at MGH Broadway Revere is one primary doctor that refuses to do a referral from eating see a specialist now I'm going to the hip doctor hopefully the hip doctor at MGH Fruit Street Boston Mass will refer me to a specialist to look at this lump I already had one lump taken out of my back a year ago and this one they were ignoring they think I should be fine that's what my primary care doctor said I am going to keep trying that's all I can do is just keep changing doctors or hospitals whatever it takes till finally someone listens to me

[@SuperTrinity357]

Please is you have not go to another Dr. They can do a cat scan and then order a mri. In the er a cat scan can be done mri. Is harder to get in the wrong but they can do a cat scan for sure. But see another doctor

[@PatriciaAShelton-no6cq]

Should have just went to an orthopedic Dr. At least they do an X- ray on first visit. Then go from there. I had two MRI, last one with contrast. They saw something. Last MRI was sent to an oncologist for their opinion. Now I have an appointment set up with an orthopedic oncologist even tho it isn't coming from the bone,but soft tissue surrounding ligaments, muscles. Thinking it's a Synovial Sarcoma.

[@SapphoKore]

Did she say that it 1% of diagnoses and then she said there's about 16 000 diagnosises per year. If 16,000 is 1% of people being diagnosed with cancer per year...that is mind boggling

[@elliotbigland4300]

Ive seen u before ur a hypochondriac and comment on many health related videos u are the reason I don't get diagnosed clogging the system

[@maryamkaramkhel6353]

1 in 3 get cancer at some point in their life, so it’s not really mind boggling.

[@ninacaban7752]

Does sarcoma tumors have a name...i have huge sarcoma in my abdome muscle wall.had a biopsy two weeks result..but dr. Still dont know what is the name.more test or biopsy..to be expesifict...still waiting on how my surgery is going to be done...so all sarcomas are strange cancers??? Dr.

[@wendysgobbo8242]

I hope you’re doing well. Sarcomas are quite rare, especially in adults. I had Ewing Sarcoma and there are only about 250 cases a year in the US

[@olyacarell6434]

Why the fuck do people think it will never happen to them?? It can literally happen to anyone at any time

[@wed8909]

my friend get ewing sarcoma at age 12 and died age 16.😢

[@GKChannel-vk9en]

I have a small immovable lumps on the back of my head...when i press it i feel pain...is it sarcoma or any other things ? Im really worried..

[@barbaramancini366]

Go to doctor

[@whimzgal5439]

Would bloodwork show red flags?

[@ninjanicnic]

Massive inflammation maybe

[@gitaale4451]

Can anybody tell me about synovial sarcoma? 😭😭😭

[@linaaa791]

are you okay?

[@bobbielatham3859]

What do you want to know?

[@mcthaboss218]

I was diagnosed with synovial sarcoma in 2018 in right shoulder. i did chemo radiation and then surgery. I was in remmision for 2yrs then it came back in the shoulder again. They did surgery to remove tumor but i was still positive around the margins. Now it's 2023 and it had returned in my right lung stage 4. This is the 3rd time now and I'm so scared now that it's spread to one of my organs. Now I'm waiting to see what kind of treatment I'll have to do when i go to the lung surgeon on Aug. 15th 2023.. God bless everyone who is fighting cancer this is not fun at all. I just pray to god that he heals me although the doctors say it's not curable god has the final say.

[@justphysics9545]

​I pray to God that everything will be ok. You will be healthy

[@code066funkinbird3]

The same cancer that happened to technoblade

[@jennymcgowan9307]

I lost my mom to Lipo sarcoma

[@puny5417]

I’m sorry. This cancer is really serious. 🙏🏽🙏🏽🙏🏽

[@RSO-IV]

Not a complete story. Just a glimpse or tip of the iceberg. Only 10% information supplied in this video. 😭😭😭

[@yaboistephen8707]

Why does she keep saying 23 and healthy like people don't get health problems in every age group. sarcomas are prevalent across all ages.

[@MrGregoryHawkins]

Mpnst 18cm tumor that was 15 years ago

[@user-nu2pp1gu8b]

I didnt understand u

[@quinquiry]

wow, such a vocal fry ....

[@magdalena.slavova]

It's odd for me the always smiling tik.....

[@shirleypoplo-ej7lz]

23 23 23 23 23 ok ok we get it!!

[@sophieneider6263]

Medically sarcoma is not considered a cancer but a maglinoma, cancer are only carcinomas

[@user-cc1om3mf5t]

Come on!

[@johnjacobson9528]

Not correct

[@lovelyroses1803]

Y ppl are so ignorant! She keeps on telling i am 23 i am 23! People get cancer at any age stage whatever!

[@soundaryadevaraj9567]

If your motive is to make people aware of the fact that cancer can affect any age group, you could simply say so. There's no need to give that tone. Be kind always :)

[@irish2979]

The doctors voice is incredibly boring and grating

[@rebeccabrown5014]

The doctor doesn’t have to be entertaining to be an amazing doctor who cares about her patients.

[@johnd3540]

It keeps going up at the end. Like a Kardashian lol 😂

[@Legittoquit1]

How evil this Karen doctor.

[@chjijhhe]

how is she a karen?