Diagnosed with sarcoma? Let's share

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 Cancer Support Group.

Rhabdomyosarcoma I am 64 and in treatment for past year. Removed from arm and had 30 radiation treatments on arm and 25 on right armpit lymph node. Keytruda every 6 weeks and scan every 3 months. So far so good. Seem to be holding my own.

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@jspr422

Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of 2023. I had a total hysterectomy and no evidence of spread was found in the margins or abdomen. No chemo or radiation needed (for which I am very thankful). Yet because it is a highly recurrent cancer, I'm under surveillance with a CT scan every three months for the next two years, tapering off after that (which creates a huge amount of anxiety).

Question for the group -- for others in surveillance -- what advice have you been given about having surveillance at a high-volume sarcoma center such as the Mayo, MSK, MD Anderson, etc.? I've been told both "you absolutely must be at a sarcoma center" and "as long as the scans remain clear, you don't need to be at a sarcoma center." Curious about the experience of others.

Thank you for sharing!

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I had a synovial sarcoma removed in 2019. No chemo, or radiation, stage one. For two years I went every three months for CT scan. Now I go every 6 months. So far so good. However,
because of the size of my sarcoma I was told that it may return. I go to Anderson-Cooper, I see my oncologist now every six months used to be every three months. I am due for an endoscopy in three weeks. That procedure is done yearly.

I had breast cancer, right breast, 2015, radiation for 6 weeks, 7 days a week.
2023 Colon cancer stage one. removed, no chemo, never any medication. Sound awful, but I feel good.

I wish you the best! Take care.

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Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of 2023. I had a total hysterectomy and no evidence of spread was found in the margins or abdomen. No chemo or radiation needed (for which I am very thankful). Yet because it is a highly recurrent cancer, I'm under surveillance with a CT scan every three months for the next two years, tapering off after that (which creates a huge amount of anxiety).

Question for the group -- for others in surveillance -- what advice have you been given about having surveillance at a high-volume sarcoma center such as the Mayo, MSK, MD Anderson, etc.? I've been told both "you absolutely must be at a sarcoma center" and "as long as the scans remain clear, you don't need to be at a sarcoma center." Curious about the experience of others.

Thank you for sharing!

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@verena

I had a 6 cm Myxosarcoma removed from my right thigh two weeks ago. I had 5 weeks of radiation prior to the surgery and my tumor did not shrink, either. I just made appointments for the first follow up CT and MRI in June. I wish you all the best!

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I hope you are healing nicely. Because my surgeon had to clamp off my femoral artery, I had blood clot issues for a short time. I will keep you in my thoughts and hope your scans bring wonderful news!

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@dhellberg

Hello - I am 60 yr old and was diagnosed with Undifferentiated Pleomorphic Sarcoma of my right posterior thigh. I was stage 3 at the time of discovery and my tumor was large >10cm. I underwent 5 weeks of radiation in hopes of shrinking my tumor before surgery however it did not shrink at all. I underwent surgery in April 2023 and have scans every 90 days. I recently had an MRI last week that shows red bone marrow conversion/reconversion and being I'm a non-smoker and recent bone pain, I have a PET scan scheduled this Wed. I stay positive and grateful every day and stay in faith. I send prayers and well wishes to all sarcoma survivors to. date. God bless - Donna

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I had a 6 cm Myxosarcoma removed from my right thigh two weeks ago. I had 5 weeks of radiation prior to the surgery and my tumor did not shrink, either. I just made appointments for the first follow up CT and MRI in June. I wish you all the best!

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Hello - I am 60 yr old and was diagnosed with Undifferentiated Pleomorphic Sarcoma of my right posterior thigh. I was stage 3 at the time of discovery and my tumor was large >10cm. I underwent 5 weeks of radiation in hopes of shrinking my tumor before surgery however it did not shrink at all. I underwent surgery in April 2023 and have scans every 90 days. I recently had an MRI last week that shows red bone marrow conversion/reconversion and being I'm a non-smoker and recent bone pain, I have a PET scan scheduled this Wed. I stay positive and grateful every day and stay in faith. I send prayers and well wishes to all sarcoma survivors to. date. God bless - Donna

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@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one "looking suspicious", on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells "floating" in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that's in the realm of our new normal now. We're obviously in the early stages of trying to navigate through this "Brave New World", and trying to figure out where/how to find women with my type of cancer.

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I had an aggressive lemon-sized (neuro?) fibrosarcoma of the abdomen in 1990, Stage IV, with very poor prognosis (nil). I was 33y with a toddler, living in upstate NY. The first surgery was not completed due to heavy blood loss. We moved in with my folks in CA, for childcare & proximity to treatment. I had 3 (7-8 day) courses of ifosfamide w/ mesna, then 5wks of radiation, followed by a successful (14 hr) surgery at UCLA. The tumor was a dead husk, and they were able to save all major organs. The sarcoma has not returned.
Best wishes for your chemo. Everyone’s reaction is different, some get the munchies, some can’t hold water down. Stick with the chemo, I think that’s what made the difference in surviving a ‘terminal’ diagnosis.
As for abdominal surgery recovery, it was about 2 yrs before I felt comfortable wearing pants with a waistband that zipped. Vitamin E cream and gentle scar massage has kept the scars smooth.

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@greeneagle

I found a tumor in my left groin in 2009. I asked my physician if he thought maybe my hernia had returned? He said, he did not believe so, and for me to watch it and if it ever hurt or got larger to let him know.
In February of 2010, it had gotten a bit larger but no pain. I was ordered to have a CT scan which showed a bad gallbladder and a shadow that the radiologist was not sure what I had. Two days later had my gallbladder removed and exploratory surgery on the shadowy area. It was discovered I had Liposarcoma. Hospital radiologist said, no cancer but my physician sent my tumor to Mayo Clinic. Results can back, some cancer cells. in 2011, I had another tumor in my left groin area. This time, I went to MD Anderson in Houston to have a 2nd tumor removed. I asked my surgeon if it had any cancer. I was told, "my stars"were aligned as there was not any cancer. In 2017, while playing golf, I felt another tumor in my left groin. It was removed in February of 2019. I was told I should not still be getting more tumors. In 2022, another tumor was spotted by a CT scan. I asked MD Anderson, what do men of 82 do- have the tumor out or wait until later. For some reason, If I do not remove a tumor, I do not get a new tumor; only if is removed. My first tumor removed in 2010 was second stage. I will be 84 this summer and wait to see if the tumor grows large enough to be painful. I return to MD Anderson every October for a CT scan to see how much the tumor grows. Last year it grew the width of a human hair. It is the most common type and very slow growing.

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I am sorry and wish you the best. My synovial sarcoma has not returned, yet. But I am always waiting. I go for CAT scan every six months. I will be 82 in June. So I hope for the best and keep smiling. What else can we do?

I was diagnosed with the stomach cancer in 2019. I feel good, but have no appetite.

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@verena

Although English is not my first language, I was actually referring to the lots of new medical terms I suddenly had to navigate. It felt like I was entering a foreign country. Thanks for helping others find a way.

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I see. Sorry for the misunderstanding. My doctor is very receptive to questions. Is yours?

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@amyb5

I’m so glad everything went well. My experience with them has been very positive. I don’t share your language challenges, but worked there years ago, & used the translators with many patients. My thoughts are with you.❤️

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Although English is not my first language, I was actually referring to the lots of new medical terms I suddenly had to navigate. It felt like I was entering a foreign country. Thanks for helping others find a way.

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