Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Interested in more discussions like this? Go to the Sarcoma Support Group.

leroy23 | @leroy23 | May 3, 2023

Who can help me connect with someone specifically who has had HIV for over 10 years and now has kaposis-sarcoma?

cc44 | @cc44 | May 6, 2023

In reply to @leroy23 "Who can help me connect with someone specifically who has had HIV for over 10 years..." + (show)

Hi Leroy,

I am a sarcoma survivor and peer counselor. A peer patient of mine has had HIV for a long time and also Kaposi's sarcoma. For patient confidentiality, I would have to clear providing his contact information with the peer program as well as the patient. Let me know if this is something you would like me to pursue and I would be happy to try.

cc44 | @cc44 | May 6, 2023

In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)

Hi Sonny,

I experienced the same diagnosis in 2019. Stage 3 UPS almost 10 cm. It was surgically removed and I went through chemo and radiation treatments. A small recurrence in 2021, clear since.
Seek out the best doctors and hospital you can. I went to UCSF. Follow their advice, be your own advocate - seek out information, get 2nd opinions, keep yourself busy, and enjoy each day.
Blessings to you!

zazu | @zazu | May 7, 2023

In reply to @posi9 "I have radiation induced Angiosarcoma of the breast. Surgery in 2019 and 2021. In March of..." + (show)

I’m sorry you have been going through all of this. Stressful and devastating. Certainly a huge punch in the gut. I urge you to reach out to your local cancer center for emotional support and counseling. Here’s my story:
I had radiation for a low grade hormone positive BC in 1999. In 2017 I found a lump under my arm and it was spindle cell pleomorphic sarcoma. 2 surgeries to remove 2 ribs and get wide margins. Extremely painful recovery with questionable lung nodules. Then one year later they found another breast tumor in the exact spot where the radiation boost was delivered. Triple negative BC this time, bilateral mastectomy and chemotherapy. Possibly radiation induced but nobody has declared that. I had an emotional breakdown after the mastectomy surgery, no block given and woke up feeling like they had taken a burning hot machete and sliced off my breasts. It was a very traumatic experience and I still have flashbacks. You have been through some very traumatic experiences so you may want to consider some counseling to help cope with that. I’m 5 years out and still go for emotional therapy. It has helped me get out of my own anxiety and fear. It’s not easy and PTSD did a real thing. Please reach out to me when you need to talk, cry, swear, whatever it takes

Colleen Young, Connect Director | @colleenyoung | May 8, 2023

In reply to @acg1979 "Hello everyone! I’ve been trying to find a Sarcoma support group for years! So thank you..." + (show)

@acg1979

Hello everyone! I’ve been trying to find a Sarcoma support group for years! So thank you @colleenyoung ! I was diagnosed with Low-Grade Endometrial Stromal Sarcoma following a Myomectomy in which the 15cm tumor had been manually morcellated in November 2019. In an attempt to coverup what the surgeon had done, they clinically staged me as 1B prior to the hysterectomy a month later, by which point my entire Uterus was tumor. 100% myometrial invasion. Standard protocol would be to Surgically Stage, yet this corrupt hospital network (the obgyn, pathology, oncology, records, “patient advocacy” office… all united to ensure that my own health information was kept from me) told me I was still 1B. It took me MONTHS to piece it all together. The day I did was the most terrifying day of my life, I’d say. To have this rare, aggressive cancer and feel more afraid of the doctors than I was of the cancer. I thought if they could be that devoid of ethics and morals AND seemingly VERY determined to hide their dirty laundry aka Me, my life was in danger from both the cancer AND physicians. I felt so violated, so dehumanized. We specifically agreed to do the surgery, abdominally, because of how important it was to remove it “en bloc”. He was supposed to remove the uterus if he couldn’t get it out in one piece. I was 40 and had never pined for children. Then, once I am unconscious, he decides that saving the uterus should be more important to me. Possibly, he figured I didn’t know my own mind. Possibly, I was a science experiment. Possibly, he’s a Sociopath. But what is scarier than what his motivations might’ve been, was, how quickly the cover-up began. That very day they knew. I now receive treatment at a cancer center about 2 hours away. I am working on the fear and distrust I have of Hospitals and physicians, but I feel forever changed by that experience. Other doctors, even at my new cancer center, would stick up for him, and say that because Sarcomas are so rare, slicing it into thin pieces with a scalpel was a mistake that any doctor could’ve made. These doctors had never met the man, who understand the concept of ‘Informed Consent’, I’d hope, would say this to me, compounding my trauma by making defensive comments for the man (and Hospital Network) who, as far as I was concerned, had violated my unconscious body as well as many Medical Codes of Ethics. It made no sense. It was terrifying to think that doctors across cities and states that have never even met, would unite against a patient. Has anyone else here had a Uterine Sarcoma morcellated? How were you treated/communicated with? Honesty and acknowledgement should be THE ONLY way Hospitals address Medical mistakes. I’d be a different person today if my humanity had been acknowledged…
So far, treatment-wise, I have had 3 surgeries, take Anastrozole 1mg daily, and get CT scans w/contrast every 3 months.

Jump to this post

Hi Amber, welcome! You may wish to connect with Darrin in this discussion:
- Endometrial stromal sarcoma (ESS): What treatment did you get? https://connect.mayoclinic.org/discussion/ess-cancer/

karynk | @karynk | May 9, 2023

Hello. My name is Karen. have had leiomyosarcoma since 2020. I had a 8 1/2 hr surgery which I also lost the right kidney because the mass was wrapped around my kidney . 2021 It cam back in my lungs and liver. The liver I had an ablation and then I had chemo from Oct to Feb 22.
Now it is 2023 and it is back in my lungs. I will be having radiation this month to stop the nodules. AND Also I was diagnosed with breast cancer stage one. I will have a partial mastectomy and radiation in June. Staying positive and praying for a MIRCLE.

posi9 | @posi9 | May 9, 2023

In reply to @sherirp "Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to..." + (show)

My case was very similar. Private. Message me if you want to chat.

karynk | @karynk | May 10, 2023

In reply to @posi9 "My case was very similar. Private. Message me if you want to chat." + (show)

I really don’t have any help for you. My breast cancer is not from the Leiomyosarcoma which is rare and uncurable cancer I’m at a stage 4 but treatable. Although it has returned to my lung radiation is being set up as we speak.
I also have stage one breast cancer and they are removing lymph nodes from under the left arm. So do you get lymphedema when they remove the lymph nodes? Do you get much swelling from it? Or pain?

cortina33 | @cortina33 | May 11, 2023

In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)

I was diagnosed with Leiomyosarcoma 2020. I have had a hysterectomy and they also removed both ovaries. Due to the spillage during surgery I also required the removal of the omentum. But it still continues to spread like wildfire. I had a right lung resection with pleurodesis on December 2022 due to my cancer spreading to my right upper lung. I have been treated with gemzar and taxotere with minimal success. They have also put me through immunotherapy drugs that threw me into autoimmune hepatitis and I had to stop taking Votrient and ipilimumad. I have had a HIPEC surgery with small bowel resectioning and tumor debulkin twice the first one in June 2022 and second one in February 2023 . I just finished my last chemotherapy round of doxorubicin. I am scheduled for a PET scan on May 30, 2023 at Stanford. My tumor specimens were sent to Natera for genetic testing and sequencing to find a better medical approach. I am hoping they find a way to extend my life with better treatments. I am not sure if I will be put on a maintenance drug at his point. I am only 47 years old and I was told by my ONGYN that I was too young for cancer and no CT was needed when I asked for one prior to surgery. I was concerned it could be cancer but she did not listen she kept telling me that it was a fibroid. Even though I was vaginal bleeding since December 2019 and needed 2 blood transfusions in less than 3 weeks she still insisted they were just fibroids and that I should not worry of it being cancer because I was young . I guess now I just have to keep fighting nothing else I can do but live with the consequences.