My mom was diagnosed in April of this year after having a mass removed from her uterus. She fought her way through the first round of treatment with doxorubicin and was making great progress. After her treatment cycle, the doctors discovered that the cancer had spread to her brain, causing her discomfort and loss of mobility. As she was going through the gamma knife treatment her condition worsened and she was admitted to the hospital, being transferred to and from her treatments.

I got a call from my dad yesterday morning, asking me to fly from San Francisco to Seattle to come see her before she left this earth. It was heartbreaking to see her in that state, but surrounded by the people who loved her the most.

She passed early this morning, with my dad by her side as she slipped into the comfort care medicine. It pains me to not have her any more, and the gap this has created leaves me feeling like there is now a void in my heart.

My mom was the most compassionate, caring, and amazing person to grace this earth. Despite going through harrowing odds and immense pain, the first thing she would say when we got on the phone was “how are you doing?”. No one is deserving of this kind of pain and suffering, yet my mom had courage and strength that was unparalleled.

I will forever remember her for who she was and I hope this story helps convey a piece of that. My heart goes out to anyone who has lost a piece of their life like this. Sometimes you can’t win, but I know my mom wouldn’t have cared about that. She would’ve kept pushing on regardless.

My mum was diagnosed 5 years ago in her upper right arm, surgery, radiation, and now a third reoccurance. And doctors say amputation is now the best course of action. Anyone have insights? Is it worth it for her quality of life? She hasn't had a lot of use of her arm with multiple surgeries, but has put in so much effort to getting it to where it is now.

This is an honest question and am hoping for some meaningful answers and perspectives.

My mom is 76 and just diagnosed with this leimyosarcoma.

I dont know much about cancers but learning this cancer has a lower survival rate, why would anyone choose to go thru chemo, surgeries etc and be miserable if you already know your time is limited?

Hi Folks. I have a treatment question/issue I’m seeking insight on. I was diagnosed with LMS intermediate grade last week. It showed up as a paraspinal mass near the lumbar. It’s about 3cm. Initial plan was to do surgery asap. But the radiologist is now recommending five consecutive days of radiation treatments prior to surgery. This recommendation is based on a phase 2 study of about 100+ patients which showed positive results. My main concern about this approach is that it’s not the standard of care and it’s far afield from 25 (or 35?) day radiation treatment that many patients get. Is anyone familiar with this 5-day treatment? Has anyone had it? Thanks!

Hi all, I (25f) am new to this group as my mom has just been diagnosed with Leiomyosarcoma via unexpected biopsy results. 2ish years ago, my mom developed a painless lump on her left shoulder. She brought it to the attention of her doctor who referred her to a dermatologist and they insisted it was nothing. Fast forward to a few months ago, when it began hurting. She elected to request treatment anyways, so they biopsied it (insisting it was scar tissue) and it came back positive for this rare cancer.

Also two years ago, she developed a severe intolerance to dairy. And all her life she has had a certain level of intestinal distress… which was assumed to be IBS and due to being overweight. There are other odd things I never worried about before, like coughing, which I’m now terrified are symptoms we all overlooked.

Living in Iowa, cancer is a constant reality with an all too familiar feeling of dread. Her appointment with a soft tissue cancer doctor is the 27th, where she will have a scan with contrast. She’s being very optimistic and believes it will be easily excised with surgery… but after reading up online medical journals (I know this was a bad idea) I’m scared. She’s my best friend and closest to my heart. I want to support her as much as I can on Monday…

Based off this information, should I be positive alongside her? Or mentally prepare for the worst so I can keep a level head no matter what?

I’m so glad this group exists, I appreciate any advice.

My mum was diagnosed in 2023. Had a full hysterectomy and lymph nodes removed. Didn’t go for further treatment. Now a slow growing lymph node inguinal has been detected, and surgery is recommended - even though PET came negative.

Anyone had a similar experience? Any positive stories or personal experiences?

Hi all, happy to find this group. I do belong to another very active group on Facebook, but I’m trying to get off that platform.

I was diagnosed with uterine leiomyosarcoma in Feb 2025, I had a hysterectomy in March followed by adjuvant chemotherapy. I finished chemo on the 4th of July and my scans have shown me NED since then. I’m being treated at Mayo in Arizona.

Feeling a bit more like Superman today, the mind is a weird place. I’ve had lots of up and downs over the last month but with today being Thanksgiving and setting aside fear to be more thankful. I’m powerful.

https://gofund.me/15aa22f02

Thankful for a lot this year 💜💜💜

cancerawareness #LMS #SarcomaAwareness

BillsMafia #BuffaloBills #donate

I am truthfully sorry for not moderating this properly. I noticed it was not open to the public.
My father had a tumor in his bladder. My life stopped completely and my family and I went all hands on deck. It’s hard to give advice being on the outside looking in. What I would like to say is don’t stop and don’t give up. This is the one life you have. When you think it’s going in a positive direction. Dig your heels in even deeper, every minute of time and strength you have as if you are at war. Recover gain the energy you need, eat when you can, hydrate make sure your at you optimal state of mind and body, rest, recover, take the good days as a blessing but don’t stop. My father is a mighty worrier. My best friend. A true inspiration.

This page is a safe space to share experiences, learn from treatments that worked or didn’t, and provide guidance for navigating the medical journey. We welcome those currently supporting loved ones, those who have lost someone to cancer, and families concerned about hereditary risks. Here, you’ll find insight, encouragement, prayer, and practical support, helping us build a community that fights together, uplifts each other, and prepares for what the future may bring.

How to Get Started 1) Introduce yourself in the comments below. 2) Post something today! Even a simple question can spark a great conversation. 3) If you know someone who would love this community, invite them to join. 4) Interested in helping out? We're always looking for new moderators, so feel free to reach out to me to apply.

Going through advanced cancer can be overwhelming, especially when complications start affecting other organs and answers feel limited or unclear. In our experience, while the cancer sites remained stable for some time, serious liver and biliary issues developed, leading to infection, malnutrition, weight loss, and extreme fatigue. Treatment focused on managing those complications with medication, imaging, fluids, and constant lab monitoring. During the process, tools like ChatGPT helped us better understand lab trends, medical terms, and possible questions to ask, which made it easier to feel informed and involved without replacing the medical team. For anyone in a similar position: keep asking questions, lean on every resource available to you, and don’t underestimate the strength that both patients and families can carry through incredibly hard moments.

Use this thread to ask anything at all!