r/sarcoma

My husband(32m) was just diagnosed with desmoplastic small cell cancer. It’s in his peritoneum and no where else so far. I don’t know what I’m looking for by posting this. I am just so overwhelmed and angry. He is supposed to start chemo today but I feel like the doctors haven’t had any answers for us up to this point and I’m hoping they have some for us today.

Hi, I’m a 31 yr old female. I got told I have Ewing sarcoma about 3-4 months ago. I had a HUGE tumor on my kidney and 2 spots on my adrenal gland. I had my kidney and adrenal gland removed May 6th. I had a spot on my lung before my surgery and stuff. But the spot is still there and grew just slightly. It did light up on the PET scan but nowhere else did. My margins were clean when they did the surgery also. My lung spot is 8mm. I went to sarcoma specialist and he wants me to start chemo (IE/VDC) this coming Thursday. Every 2 weeks, 14 sessions. I have to stay at the hospital minimum of 3 days up to 5 each time I get the chemo. I am BEYOND terrified of the symptoms I’ll have/get and if this cancer will ever go away. Mine is extraskeletal, so not in bones. I’m also getting a port put in and nervous about that too bc I’ve had 2 blood clots(provoked) after childbirth and I heard ports can cause clots.. I need some support with all this.

Clarification... I'm not angry at my husband at all. I'm angry at the situation of his care.

First of all I want to post a trigger warning for all of you that are valiantly fighting this beast of Sarcoma. Please don't read on... keep fighting. 🙏💕

My husband of almost 38 years passed away last week after a brief battle of Sarcoma NOS. I feel a bit angry that he was not referred to palliative care sooner. He suffered so much pain for his last month. I keep asking for more pain meds or different pain meds. We finally got palliative care appointment a week ago Monday and the nurse was like omg... I'm so sorry you had to come in for this appointment. If I'd know he was so bad I would have just done the referral to hospice. She ordered fentanyl patches and we got them on Tuesday. They take 12 to 24 hours to kick in. Wednesday we had hospice intake and the nurse thought he had a couple of weeks left. The hospice doctor also ordered liquid morphine and ativan. I gave him 4 doses and he passed the next day. A week ago yesterday. I know anger is a part of grief. I can't help but wonder if he was referred to palliative care or hospice sooner his last week would have been more comfortable for him. The last 2 weeks were brutal until the fentanyl patch kicked in. I'm thinking of emailing the cancer center to say if you ever have a patient in similar situation as my husband. Refer them to palliative care right away. I don't know if that will help but I don't want someone to go through what we went through. I feel like he slipped the the cracks even though he was being seen through top Sarcoma center in our area.

Praying for those that are in a similar situation as us. 🙏💕

Mi esposo tiene un tumor astrocitoma grado 4 en el lóbulo frontal izquierdo ya fue operado tuvo radioterapia y va en el séptimo ciclo de quimioterapia. Digamos que esta respondiendo al tratamiento.

A nivel personal ha cambiado mucho, su comportamiento es raro, se aisla, confronta en fin...... tenemos un hijo de 6 años y estoy muy preocupada por esto como manejarlo qué viene para nosotros. Que hacer

Spouse here. They are Three years in with stage 4 and have been NED for over six months. Docs seem thrilled but spouse is depressed in a new way. Anyone have this experience where you can’t trust good news?

Welcome to Sarcoma Saturday.

Your monthly space to connect with the community beyond the usual flared-topics. Whether you’re here to share a personal win, talk about how your week has been, or just drop a lighthearted thought. Need an area to express concerns, or just to open up some- this is your place!

Feel free to:

• Share updates about your journey or caregiving experiences.
• Ask non-urgent, casual questions.
• Recommend a book, podcast, or show that’s been helping you unwind.
• Celebrate small victories or share challenges in a supportive space.

Let’s take a moment to connect, recharge, and remind each other that we’re not alone in this journey. Whether it’s about Sarcoma, life in general, or something entirely random, we’re here to listen. 💛🎗️

As a reminder: Comments asking the community to interpret symptoms or provide a potential diagnosis are not permitted.

Hello everyone , what is the sarcoma called that's between the food tube and nerve ?

& if you have this type of sarcoma, how are you feeling ? Are you cancer free ?

Experiences with Intermediate-Risk Embryonal RMS Treatment in Young Children

Our 4-year-old daughter was diagnosed about 6 weeks ago with Stage 3, intermediate-risk embryonal rhabdomyosarcoma after a large pelvic tumor (about 10–11 cm) was discovered in her pelvis. It was compressing both ureters and causing hydronephrosis, so she required bilateral nephrostomy tubes before starting treatment.

She's being treated at St. Jude on a protocol using VAC chemotherapy plus liposomal irinotecan.

Thankfully, the tumor has responded extremely well so far. It has shrunk dramatically, is now difficult to even feel, and her kidney drainage has improved enough that the plan is to internalize her nephrostomy tubes soon.

The hardest part has been the treatment side effects. After her first cycle of liposomal irinotecan, she developed severe delayed diarrhea that progressed to pancolitis, dehydration, and a hospitalization for IV fluids, antibiotics, and supportive care. It was a scary week, but she recovered well.

She has now completed her 7th treatment. Her appetite is returning, she's eating much better, and after fluids and good meals she's back up to 14.7 kg (32.4 lbs). She also has some vincristine-related nerve symptoms (facial/voice changes and decreased knee reflexes), which her team is monitoring closely.

Overall, we're incredibly thankful for how well the cancer has responded, but the side effects have been much tougher than we expected.

I'd love to hear from other parents whose children went through treatment for intermediate-risk embryonal rhabdomyosarcoma, especially if they received VAC with irinotecan. How did the rest of treatment go? Did the severe GI side effects recur? Did the vincristine neuropathy eventually improve?

Thank you in advance. Reading the experiences of others has been incredibly helpful for our family.

It has been 5 years since my diagnosis (25M, Ewingsarcoma in my left femur), which is a very special moment for me. I am very grateful to be here today, its insane what I have gone through.

On the flipside, I am still so-so tired. It has gotten better these past few years, but I still am shocked at how tired I am. Lately I have been feeling like an anchor is attached to my body. First, I was able to read. Now I just can’t anymore. I sleep more, spent more time horizontal.

I have done so much therapy to work on my mental health; starting opening up about my issues, and really started to do things that I want to do with my life. All these things also take up mental space, so that also has an impact on my energy levels.

I also started to do different things for working out. Just lifting weights is too much for me, it takes such a heavy toll on me. So I just walk and do things like Yoga.

After treatment I was treated for PTSD. My nervoussystem was/is dysregulated; hypervigiliance etc. Maybe now that I am calmer I can actually feel how tired I am?

I wanted to ask about how you guys experience this. How tired are you guys? What are you able to do (cognitive and physical)? Shouldn’t I be less tired this far out?

❤️

​

Hi r/cancer, I’m Lukas’s mom.

Lukas is 15 now. He was diagnosed with metastatic Ewing sarcoma at 12 - thorax, vertebrae, iliac wing. He beat it once at 13.

Last November it came back in his skull.

Now he’s in the REECUR clinical trial. Three years of hospitals, scans, fear.

Last week we took him to the Video Game Museum in Málaga for a few hours. He sat in a racing simulator and for the first time in months I saw MY son, not the patient. He was shouting, laughing, playing like any 15yo. He forgot he was sick for 2 hours.

I’m not here to ask for money in this post. I just wanted to share that moment with people who understand what 2 hours of "normal" means.

If his smile did something for you, his Ko-fi is in my profile. We're raising funds for trial-related costs, travel, and to keep giving him these "normal" days between battles.

He calls this "The hardest level yet". And he's still playing to win.

Thank you for letting me share him with you.

[Link to the museum video clip]

TL;DR: My 15yo has fought metastatic Ewing sarcoma since 12, relapsed in skull last Nov. Now on REECUR trial. Took him to a video game museum and he was a kid again for 2 hours.

23 days ago, my father suddenly developed unbearable abdominal pain in the early morning and was rushed to the hospital. After examinations, doctors found that his spleen had ruptured.
He underwent emergency splenectomy, and thankfully, he survived the surgery. At that time, our whole family finally felt relieved.
However, the pathology results brought devastating news. The tumor that caused the splenic rupture, along with suspicious lesions found in his liver, were examined and confirmed to be splenic angiosarcoma with liver metastasis.
This is an extremely rare disease, and primary angiosarcoma occurring in the spleen is even rarer. From the information we have found, this disease is very difficult to cure.
The doctors advised me not to tell my father how serious this disease can be because they worry the news may emotionally destroy him. Right now, he is recovering and his physical condition is still good, but for our family, it feels like there is a time bomb that could go off at any moment.
We are about to start chemotherapy, and I am honestly very scared.
I would be incredibly grateful if anyone who has experienced a similar diagnosis, family members of patients, or medical professionals with experience in angiosarcoma could share their stories, advice, or information about treatment options.
Thank you so much for reading.

Hi. I’ve been told I need an excisional biopsy on a 2x2cm lump on my leg. They said they don’t think it’s cancerous but can’t rule it out.
My surgeon said they’d get this done in 2-4 weeks. Over a week went by so I contacted to ask for an update on my date. I receive a call today telling me she’s going to be away for 6 weeks and only doing long surgeries between now and her annual leave.
I’m incredibly upset. She only told me a week ago she would get this done within 2-4 weeks and I could possibly even have the results back by the summer holidays.
To be told I wouldn’t get a date until September is destroying me. I have severe health anxiety.

Has anyone ever gone private for their surgery and consultation and can tell me the Costs and timeframe because I can’t wait this long. It’s driving me insane.

How can they tell you that you might have cancer and then leave you like this.
Thanks

i’ve heard of a lot of people reporting recurrence after 15-18 years. in most other cancers i think that’s considered a new cancer because after 5 years the original cancer is “cured” right? is late recurrence just a problem that sarcomas have? at what point is it considered a new cancer rather than a recurrence for us? do we ever get to stop scanning or do we just have to be on our toes forever?

Hello everyone..

Searching for thoughts or inspiration from anyone who is living with or been a care giver to someone with Stage 4 OS.

My husband (40) was recently diagnosed with primary tumor of right femur/hip with mets to both lungs. Outside of a sore hip after an incident walking our dog, he had no symptoms. Only found it when he went to an Ortho for what (he thought) was a muscle issue.

We are at a major Sarcoma center, and he has just finished two rounds of Dox/Cis - he did fairly well and PET scan this past week shows good progress. Still have a lot of ground to cover but feeling positive so far for this very heavy diagnosis.

This is where things start to get hazy for me. Our oncologist has shared their perspective to treat his whole body and not get focused in on any one area. The message to us last week was they are not focused on surgery right now but wanting to continue to hit this with the chemo, then (assuming we continue making good progress) give him a break for a couple months, then more chemo. They did mention if pain was an issue or there was an integrity issues with the leg, then ofcourse that changes the plans. But basically, if his leg is feeling better, let’s get after it with the “big guns” of chemo.

On the one hand, this makes sense for where we are right now - 1st line treatment at Stage 4. But once we finish this protocol, it just feels odd that we would leave these things in his body. I know surgeries are risky, but it kind of felt like there is not much focus right now on getting the “bad stuff” out. Maybe that changes over time, but my mind is already going to “do we need another opinion” or essentially how do we ensure we are getting the best individualized care. I know these big centers see a ton of patients and it can at times feel like a “drive by”.

So for those who have walked this path -

- Anyone not have surgery?

- Are there DNA tests we should be doing to make sure future treatments are effective?

- Anyone navigated getting another opinion after experts did not give a plan forward you aligned with?

- As a care giver who is new to this area, what am I missing or what do I need to chase down to give us the best opportunity here?

Thanks in advance for anything you can provide.

I (m16) was recently "diagnosed" with ewings. I have yet to get any updates from doctors but the mri are bad. It's pretty flat, but it's about 8-9cm near my knee. I also have a fracture there so it's been hard on me. If anyone has had any similar stories can you please let me know

Edit. I got the true diagnosis. It's osteosarcoma

I got my first diagnosis at 5. Synovial sarcoma in the left groin. Just got surgery then.

Then it came back when I was 9. Got the full treatment: surgery, chemo, curietherapy & radiotherapy.

In the middle of May, while showering, I felt the same thing I had felt 18 years ago. A mass in the left groin. It was devastating. Still is, tbh, taking anti-anxiety meds to deal with it. I had always have the feeling that I'd have another cancer one day, but I hoped it was my pessimism.

Anyway. Yesterday I had a meeting with my oncologist, after doing my PET scan on Monday (and a shit ton of other tests).

It says the scan "highlighted" (English isn't my first language, Idk if that's the right word for it, but I'm guessing it's understandable) small lymph nodes in my groin (both sides) and armpit, as well as my spleen, a lot.

He said it could be my body fighting an independent infection/inflammation. I had just gotten new vaccines to prepare for chemo. A few weeks before I had met my niece who developped chickenpox afterwards.

Waiting for a biopsy.

The doctor tried to be reassuring. From what I understand, lots of doctors follow my case (one of the best hospital in the world for cancer!! yeah!!), and they are pretty divided. I'm really really hoping it's just the result of those vaccines. I don't know what will happen if my cancer spread out.

I can't have any more radiotherapy & curietherapy because my body is maxed out after my previous cancer. Starting chemo on monday or friday tuesday.

Anyway, it's a bit of a rant (or a pity party, but we all need one sometimes), but also seeking a bit a reassurance. I've been reading too many sad ending cancer stories, and I guess I'd love to read about your survival story. Especially if you've had a similar experience.

I guess I'm terrified of dying at 28. Realising how little I've done in life.

I've been off treatment for a few months and have been cancer free for about 7 months. I had a scan yesterday that showed I had a moderately active lymph node at 5.2 SUV. My doctors think it's likley nothing serious due it being explained a recent violent fall and having begin chacteristics but want to biopsy. Additionally my cancer history saw total tumor death. I am however deeply worried since the last time I had a biopsy for something that was likley nothing serious it turned about to an aggressive UPS of the Bone. I was wondering if anyone else has had experiences with lymph node scans of PET Scans and what there experience was.

Considering switching to Kaiser. High premiums, copays and access to private drs has been challenging. Tired of trying to find drs all over Los Angeles! No current active disease considering changing to Kaiser. Any thoughts or referrals ?

I thought I'd share a segment from the DSRCT Support groups weekly call. Once a month we've been having a guest speaker and this month I had the privilege of sharing my story of self advocacy and going into the real details of what the journey was really like as a rare sarcoma patient.

While my cancer may not be the same as yours I hope that in some way this can help someone else who is in the middle of or who may some day be facing a horrific diagnosis.