r/sarcoma

Looking for any advice from peoples' experience.

So my mom (69 years old) was just diagnosed with UPS/Spindle cell sarcoma. She has a 14cm tumor in her left thigh that is grade 3/3. No mets were found anywhere else in her scans. We just met with an oncology team and plan is for 5 weeks of radiation and then surgery. Because of the size & grade of the tumor, the team also recommended systemic treatment with either chemotherapy or immunotherapy to help ensure that any microscopic cells elsewhere in her body are taken care of. I’d love people’s input or experience to help her decide between chemo, immunotherapy, or neither in addition to her radiation/surgery.

For more info:

-CHEMOTHERAPY for this cancer has only proven to be 5-10% effective in preventing recurrence. It also comes with the rough side effects. Plus, my mom has a history of a brain bleed (follows with neuro) and the oncologists had a concern that chemo may affect her platelet count, making any future bleeds more dangerous.

-IMMUNOTHERAPY would have fewer side effects but there are not enough studies to definitively prove benefit (although it does seem to be fairly effective in preventing recurrence). The downside for this one is that my mom has a history of ulcerative colitis (autoimmune condition) and this could be triggered/exacerbated by immunotherapy.

Looking for any advice.

Hey guys so I just finished my last chemotherapy a week ago and scheduled to get my chest port out in a week I’m 20 yrs old but turn 21 next week and I used to smoke daily before my diagnosis weed and nic it was just part of my everyday life once I got diagnosed the day they put in my port I stopped smoking completely and now that I’m done I want to smoke again weed and nic I’ll wait a couple weeks after my chest port coming out but does anyone else do the same as a young adult or even 30’s or 40’s smoke post chemo ? I know I sound dumb but it’s like I live one life I guess lol but idk what are you’re guys thoughts and has anyone experience this also and the cancer I had was Ewing sarcoma hope yall have good days !

Had a Myxoid Liposarcoma resectioned out of my left thigh. Pathology came back with negative margins which is pretty neat! Good luck to everyone out there fighting the good fight!

I was recently diagnosed with an intimal sarcoma. I was rushed to the ER back in March for congestive heart failure. Within 24 hours later, I was having open heart surgery for the removal of a 5 cm tumor in my right atrium. The surgery was successful. My surgeon thought it was a benign tumor/myxoma.

Surprise surprise! It was a high grade intimal sarcoma! A PET scan revealed no cancer cells in my right atrium or heart,lungs…everything else. I started doing scans and being seen at a top cancer center this past month. My sarcoma oncologist wants me to do chemo/ doxorubicin and ifosfamide: 6 rounds over 4.5 months.

They found some suspicious spots (two incredibly tiny ones in my brain MRI). I met with the brains Mets team and they didn’t seem convinced that they’re metastatic spots. They’re so tiny, that they’re going to wait until 6 weeks to see what they do.

My sarcoma oncologist told me that I’m terminal if the spots are in fact brains Mets. However, my brain oncologists told me that brain Mets would be very unusual coming from my intimal sarcoma that was in my heart. I didn’t like hearing that I’m terminal and with only 5 years to live. This is all so unreal to me and I have the feeling that my sarcoma oncologist wants me to take this very seriously (I know it’s more than serious but gosh…I don’t want to do chemotherapy.)

I do but I don’t want to go through it. I feel absolutely fine and I was looking forward to this “new life” “second life” after open heart surgery. I recovered beautifully afterwards and was just beginning to enjoy my life. Now I’m part of this group (I’ve met great people) that I don’t want to be a part of. I feel like a ghost that doesn’t want to be dead.

Part of my just wants to shave my head and eyebrows off. Pull a whole Brittney Spears. I want to call them and say I’m ready to start chemo tomorrow. I’m so fucking tired of not having control of my body and being at appointment after appointment. I’m trying to prepare by buying wigs and things for chemo but the reality is…I’m not sure if it’s even worth it. My doctor seems so doom and gloom about my prognosis but they’re also telling me that they want to cure me.

The oncologist asked me when I want to start chemo if I want to…she’s giving me the choice. I know I should do it. Can someone tell me that it’s worth it? I honestly wish someone would just tell me to do it and get it over with. I need a last push. My loved ones need me to do this. I just feel great but everyone keeps telling me I need to do this…I know I’m going to feel physically awful and possibly feel awful about myself.

Thank you for reading and letting me feel bad about myself. Please give me this last push.

Btw: I have a therapist and I’m in talks with my social workers. I need to meet and hear from other young cancer patients and survivors. Maybe someone has felt or feels the way I do. Right now I feel like I’m the only one.

Sorry I want to add more things I’d like to bitch about…
It was like my oncologist unloaded on me a whole bunch of my favorite things I’ll no longer have…

1. My long hair.

She told me I’d look good in a bob. Like I don’t want a fuck ass Bob. I don’t want to have cancer.

1. My nails (I had long acrylics).
2. My long eyelashes.
3. No unprotected sex with my boyfriend.
4. Not to mention my normal ass life.
5. My alcoholic drinks.

I know no one died but I feel like a part of me died. I’m no longer carefree, drinking margaritas on a Tuesday evening, long hair in the air conditioned indoors, healthy life, getting bikini waxes, and switching jobs type of girl (luckily I have good insurance/ secure full time job).

I understand how fortunate I am. I’m thankful for my loved ones, umm kinda general good health (I’m not sure I can even say that anymore) and my health insurance. But FUCK.

Hello I’ve been battling DSRCT for some time now I have had more chemo then I can count have had 3 surgery’s was NED for about 6 months and recently reoccurred in a small area in my Lymp nodes. Emotionally I have been drained I don’t wanna go to work anymore I’m so tired from chemo. I don’t really wanna talk to people anymore. I have nightmares about being on the operating table and spending time in the hospital. I feel so depressed that I’ve done all of this and have to do it again I didn’t even get a year.

My oncologist is putting me on cabozantinib & temozolomide. I have stage 4 endometrial stromal sarcoma with mets to my lung, lymph nodes & spleen. When i had done doxorubicin, it shrunk all my tumors tremendously & then i went on a break for a few months because i ended up getting heart failure from that chemo. After a few months, my scans showed the lymph nodes were growing again so i was put on gem/tax which didn’t work. The tumor in my lung has since grown more & i had to have a stent put in.

Has anyone had experience with taking cabozantinib + temozolomide? I haven’t seen any posts about using this drug combo & for my specific cancer. I’m 34(f) & trying to living a normal life as best as i can. I have more bad days than good even while being on a break from chemo since March. I’m nervous this drug combo will make me feel terrible.

I just got back from seeing Dr. Tseng, a surgical oncologist that specializes in retroperitoneal cancers. City of Hope in Duarte was amazing and efficient. I was told that my tumors could not be resected by University of Chicago and my treatment options were running out. I did my research and found Dr. Tseng, who has performed these surgeries successfully. So I decided to make the trip and see what his opinion was. Glad I did this because it seemed like there wasn’t any hope in sight. We are now planning to go through with radiation, chemo and then to surgery sometime in August!

Hello! I have noticed a lump in my calf that’s about to size of a quarter I would say. I noticed it in my last pregnancy about 3 years ago and it has grown since then. I have had an ultrasound, a CT, and an MRI. The ultrasound and CT came back stating nothing at all was there not even a lipoma and the MRI stated: “Mild focal prominence of the subcutaneous fat along the posterior aspect of the mid lower leg. This is favored to represent hypertrophied normal adipose tissue though differential would include poorly encapsulated lipoma. No suspicious features are identified.”

I’ve heard stories of people not having things detected on an MRI and only through biopsy. I am currently 6 months pregnant so that typically means people like to wait until after I give birth to do any further testing which I’m worried about.

I (30f) have a skull base chondrosarcoma (bone cancer) and getting surgery at the end of the month to try to resect it. I knew that it was around critical structures but the MRI/CT results made it so much real how serious the situation is.

My tumor is about the size of a walnut. However, even though it's not a huge tumor, it is growing into multiple critical areas of my skull because of where it is. It thankfully hasn't grown into my carotid artery but it apparently is right up against it and pushing it to the left some. Part of the tumor was grown into the space by my brain stem. It is also growing towards parts that affect my vision and hearing.

My tumor has been growing for 6+ years but it was only identified this year. It was on multiple MRI/CT over the years but no one noticed (a whole other story lol). Any type of cancer is scary even if it's treatable like mine but I think what freaks me out the most is all the what ifs. What if it kept growing into my carotid or started invading my brain stem. What if I didn't notice some of my symptoms or forgot to mention it at a routine neurology appointment. What if my doctor identified it during an MRI in 2020 when it would be easier to remove. I know it's not always good to focus on the what ifs but it kind of feels like when you narrowly miss an accident or if you hadn't overslept you would've been in an unsafe situation at work or in the community. The feeling that something horrible and life altering almost happened to you.

Sorry for the long post but just needed to vent to people who understand. It's hard to process that having cancer at 30 is my reality. I was diagnosed at 29 and it's a weird feeling to know I have had it since I was at least 23 if not before. I am looking for a therapist but it's hard finding one that has experience working with cancer patients.

My mom (68 year old female) was recently diagnosed with a pleomorphic dermal sarcoma on her scalp. It’s about 3cm diameter wound that she’s has surgically removed. She originally was told it was squamous carcinoma but once removed they found it was pleomorphic dermal sarcoma. She’s had multiple squamous removed over the last few years. She has been referred to a specialist for removal and next steps. She has been told the margins are unclear. She is healthy otherwise and never drank regularly, smoked, etc. Just wondering what I should be prepared for, what the prognosis is and how I can support her.

My dad passed in 2016 with a very aggressive rare form of adenocarcinoma in his small intestine so feeling a bit sensitive about this information but remaining positive. Will she likely need radiation/chemo?

Hello I need cryotherapy in Nashville and so far all I see is Vanderbilt. Please has anyone had a desmoid in Tn?

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 🕊

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.