r/sarcoma

Hello, I'm the husband. I will be writing about death in this post, so please don't read this if you're not in the mindset/not curious.

I wanted to write this post to provide some observations/perspectives on the death/decline portion of cancer, in part because when I was looking for information online I was always curious about how someone actually dies from cancer, but I simply couldn't find anything.

Again, this is not easy read, especially if you're going through active treatment. It is however valuable information if you are wanting to know how it may end.

For context my partner was diagnosed with Stage 4 Synovial Sarcoma of the hip/leg in October 2024. She was 33-35 years old during this journey. The tumor was very large in her leg, and some small tumors had already metastised in her lungs. She underwent the main chemotherapies, including one experimental one, but ultimately what happened was that as time went along, her ability to actually physically handle chemotherapy disappeared.

That said, I think she always had issue with chemotherapy. She could never take the full dose and as time went along, they always decreased the doses until it reached a point where her bloods were consistently low enough that she couldn't seek treatment. Treatment initially was positive in that it achieved a response, however it was never a full response to the point of remission. With radiation, they actually managed to make the tumor in her leg dormant, however there was always still activity in her lungs. Ultimately, she passed away from lung cancer as far as where the tumors were (they also ended up in her spine).

The main issue she had regarding her decline was having low bloods. Essentially the chemotherapy had destroyed her bone marrow's ability to produce bloods, and so in the final months she had to receive a lot of blood transfusions. Bloods are also what make you feel "fine" otherwise you get very tired/anemic. The problem with that however is that your body develops anti-bodies and it becomes less effective over time, so it's not a permanent solution

One thing that happened in the final weeks was that she just had more and more complications (I assume from the tumors + low bloods) and they happened quite rapidly towards the end. One relatively horrific thing that happened was that a tumor had developed in her spine which resulted in her fracturing her spine. She had to be in a brace.

The big thing that really affected in her final months was her mobility. She would spend a lot of time in bed and moving anywhere was a struggle.

Other complications that developed in the final weeks was intense neuropathy. It almost felt like it came out of nowhere. She said that it felt like having knives in her hands/feet. It also just seemed that she was in more and more pain generally speaking as time went along and had to increase her painkiller doses. She also had to have an nasal oxygen thing to keep her oxygen up.

As far as passing, it was very rapid and seemingly out of nowhere. She was told that she had a few more weeks left from the palliative doctor and she'd just been transferred to the palliative ward. She was very tired that night and the next day although she was seemingly okay in the morning (talking etc.) and they'd done tests with her, apparently a nurse came in and noticed that she was unresponsive and moaning. Essentially she passed away quite rapidly after, though apparently in comfort. We still don't know why she passed away, but potentially from a blood clot.

It was a huge shock to everyone, including the doctors. They simply did not know what happened or why she declined so quickly. It was a shock to me because she was fine and conscious when I last spoke to her. Like she was talking normally and was just her regular self. I think because we were always expecting to have those few weeks left.

It was also a shock because when my step-dad passed away from lung cancer it was a very, very gradual decline. I remember him laying in bed ready to pass for like 6+ hours until he actually passed.

Anyway, I might leave it there, but I'm happy to answer any questions. I have a lot of perspectives on what's happened, including regarding my own grief, but it will take time to process.

Thank you.

Today i found out that a friend of mine whos been fighting with cancer for 3 years died..

I met her when we were put to be in the same room while getting chemo, because we get chemo for few days and then go home and come again after some time.

At that moment i lost all of my hair due to chemo and i felt extremely insecure about it, and i felt like that is the end of the world(im 17 and i had long blond hair, took good care of it, and for me losing hair was extremely big deal).

When i told her about it she was so positive and happy to talk with me, and give me some advices as someone whos been dealing with it for some time now.

She told me:,, dont worry about hair, hair will grow again and when we finish with chemo and our hair does grow we will have wonderful curly hair. And it will be so strong and healthy. And we will have so much fun, and its gonna happen soon, sooner than you expect,,.

She was so positive, full of life, always smiling making jokes...

She turned 18 arround 2 weeks ago...

She didn't even get to live her life...

But i just wanted to thank her, for everything she said to me and other kids, how she gave them hope and will to continue, gave them strength and told them to never give up, because it will all pass and one day all of it will be just a memory

Thank you angel

May you rest in peace 🕊

About a year ago my partner was diagnosed with a Follicular Dendritic Cell Sarcoma (it’s an extremely rare sarcoma) and he’s had a really hard fight.
He started out with 3 rounds of doxorubicin/Ifex (it was a heavy regiment of 8hrs for 7 days each round) and then he had radiation therapy. Through all of it he had some pretty bad side effects and struggled a lot. He was supposed to have surgery shortly after radiation, but through a series of events and another rare diagnosis of pemphigus, his surgery was continuously delayed and recently had to be pushed back again until he can gain enough weight to do the surgery safely.

Due to the amount of time that has passed between his first chemo treatments and now, his oncology team wants to try a new chemo treatment: Keytruda.
They said that it’s shown to be highly effective against FDCS, but I’m nervous about it since he’s had so many bad and rare side effects when on other chemo treatments and we now know he has an autoimmune disorder.

So I was wondering what others’ experiences with Keytruda has been and if you have an autoimmune disorder and had Keytruda, how did that go?

I’m really worried because, from my understanding, Keytruda works by essentially encouraging your immune system to attack the sarcoma, but his pemphigus is likely caused by the sarcoma and is essentially his immune system getting confused and not being able to tell the difference between the sarcoma and his other soft tissues.
We have an appointment to discuss the treatment with his oncology team next week, but I still wanted to see if anyone might have some insight/personal experience (maybe not with the exact same circumstances since it’s all so rare, but something similar)
They do plan to have him get two rounds of a long term treatment for the pemphigus that should greatly reduce the likelihood of flare-ups before starting the Keytruda and he will continue that treatment along side the Keytruda, but I still can’t help but be anxious about it all given his history.

Any experiences with Keytruda your willing to share would be welcome even if you don’t/didn’t have an autoimmune disorder~

I am 30 years old with a rare cancer called DSRCT I’ve been trying to get a second option on my cancer but no institutions get back to you when you request an appointment I am in the north east I’ve been trying for over a week since I found out my cancer is back I’ve tried Cleveland clinic Dana farber mount sinai fox chase John Hopkins and not one of them actually return phone calls I just wanna be treated for this disease I have but nobody returns phone calls or emails I’m such a screw up for getting this cancer I don’t know why I bother trying anymore I’ve had more chemo then anyone could imagine multiple surgeries radiation and it still came back

Hey All,

I’m not a frequent reddit user so I apologize if I’m not super clear in my opening post in the way others might be, I’m really just looking for perspective as everything I’m seeing online seems to be fairly extreme. I (33, M) just got told that a mass in my right shoulder they removed and believed to be cystic actually had a 5.3cm pleomorphic sarcoma tumor in it.

I had the spot on my back, close to my shoulder blade, for about 3-4 months before it got removed. My body is prone to cysts and I’d been told the spot was either just that, or at worst a lipoma. Eventually it got to be annoying enough that I scheduled the surgery and got it done. I don’t think I or even my surgeon expected anything back from the biopsy so it came as a complete shock.

The good news is they can get me back in ASAP to reopen the spot and remove more tissue, and it sounds like they caught it early, but I also am not sure if I’m in the clear until I get a PET scan. I’ve been reading online since then very morbid survival rates and other information, so I’m really just hoping for a reality check from others who have gone through it or have family or friends that have. How did it go? How worried should I be? Thank you all in advance for any insight and to stop me from doomscrolling.

Hi all, 28f in Canada here with a small, deep, hard lump in my pelvic area for about 4.5 months now. After 2 ultrasounds, an MRI, and some waiting, my requisition finally got picked up by a sarcoma treatment center. My MRI report said nothing about the possibility of sarcoma, only suggested excision to verify what the mass is, so I understand they may just be doing their due diligence (my MRI images show some sarcoma characteristics, but nothing too overtly concerning).

My appointment is on Monday with an oncologist surgeon. I've never been to a surgical consult like this before (or met an oncologist, period), and I'm wondering what to expect. Any advice is helpful. Thank you!

Do you sometimes feel that the world might be against you, well apart from my stage IV Sarcoma I now have a dodgy knee replacement that locks 😄.

I had the whole knee replaced about 5 months ago due to cancer, the other day I was trying to put my shoe on, I heard a loud pop and my foots was facing 40° to the right.

It didnt hurt, but driving myself to the ER to get it unlocked was a fun game, I could heel/toe the pedals like a rally driver.

Anywho, looks like another operation to fix the Temu knee.

The surgeon said be had never seen this before, my Oncologist also told me he had never seen a Sarcoma that could get Immunotherapy, but here I am.

I have renamed myself the Cancer Enigma.

I was first diagnosed with giant cell tumor on the tendon sheath of the right index finger/knuckle, but after MRI, I was diagnosed with Nodular necrotizing myxoinflammatory fibroblastic sarcoma. Soft tissue, excision was done and RNA sequencing at Cleveland Clinic revealed a YAP1::MAML2 fusion. I am told that chance of metastasis is low, but chance of recurrence is high. I will soon be starting radiation treatments to either get rid of it or to shrink it to the point that a clean amputation of the index finger can be done, which I am assured is the worst case outcome, aside from a greater chance of nodules spreading to my lungs, in the future. I understand that in terms of sarcoma and what I have read here on this subreddit, that I am very lucky and that things could be worse for me in terms of my diagnosis.

https://www.nature.com/articles/s41379-022-01096-6

I understand that my diagnosis is rare. From what I understand, MIFS is pretty rare to start with, but the YAP1::MAML2 gene fusion is even more rare. The study I linked has only 7 patients, and surely I'm not number 8. I'd think that there has to be more info on treatments and outcomes of what I was diagnosed with, but I can't find it. My options seem to be kill it with radiation, if that does not work, we'll cut it off. So far there has been no mention of any drugs or treatments besides this.

So my question is, does anybody else have this? Does anyone know anything about this from experience? Are the radiation treatments for this novel and we are improvising the treatment? Not that this is a bad thing, in fact its an honor to be part of it. My radiologist asked for permission to do extra documentation and the words "case study" were said, as well as "patient one of one", am I really this rare of a case? Can anyone help shine some light on my situation?

I don’t even know how to start this post. A few days ago our world just collapsed. My father was diagnosed with primary cardiac angiosarcoma, which is a cancer of the heart itself. The doctors told us it’s one of the rarest cancers there is, something like 0.03% of people ever get it primarily in the heart

The tumor is 8cm or bigger and it’s sitting on his right atrium. Because of the size and where it is they told us surgery isn’t possible. It has also spread to his chest. The prognosis they gave us is 3 to 6 months and I genuinely cannot read those words without falling apart.

He is our entire world. Both my parents don’t actually know the full picture yet and right now I’m carrying all of this and my siblings. I don’t know how to have that conversation. I don’t know what comes after it. I don’t know anything right now.

I’m not here looking for statistics. I’ve already spent too many hours reading those tonight. What I’m really looking for is whether anyone here has actually walked this road. , Are there people who beat the odds? Stories of someone who made it further than the doctors said? Any treatments or clinical trials or second opinions that made a difference?

I know hope has to be realistic. I’m not asking for anyone to tell me everything will be fine. I just need to know that people have faced this and found something on the other side. A little more time. A little more life.