1. < Sarcoma
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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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 1 2:30pm
In reply to @paulaquintana "Hi! Newly diagnosed and scared to death. Noticed two mole like growths in pubic area saw..." + (show)
@paulaquintana

Hi! Newly diagnosed and scared to death. Noticed two mole like growths in pubic area saw derm years ago looked at it with their magnifying glasses said it was nothing. Went on with life, couple years ago had a full body check another derm and said nothing to worry. I’m a bigger girl don’t see the area clearly and thought get it checked again. New derm biopsy said it was scarcima in dermal layer. I have two spots and other smaller one being biopsied next week and another full body check. I’m so scared. Said I should see gyno and I scheduled that but just had ultrasound and last pap was normal. I have been fighting two bouts of diverticulitis in last year. Just don’t know what to think. My white blood cells are normal all CMP, cbc labs normal. I hurt in joints but I have lupus and APS So there is that too. Scared

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@paulaquintana, I can imagine you're scared. Thank goodness your inner voice told you to be diligent and continue to get checked. As you learn more about what you're dealing with, please post an update so I can connect you with other people with a similar diagnosis. All the best with the biopsy this week.

Is it suspected that you have sarcoma in the dermal layer or carcinoma?

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paulaquintana | @paulaquintana | Jun 30 11:51pm

Hi! Newly diagnosed and scared to death. Noticed two mole like growths in pubic area saw derm years ago looked at it with their magnifying glasses said it was nothing. Went on with life, couple years ago had a full body check another derm and said nothing to worry. I’m a bigger girl don’t see the area clearly and thought get it checked again. New derm biopsy said it was scarcima in dermal layer. I have two spots and other smaller one being biopsied next week and another full body check. I’m so scared. Said I should see gyno and I scheduled that but just had ultrasound and last pap was normal. I have been fighting two bouts of diverticulitis in last year. Just don’t know what to think. My white blood cells are normal all CMP, cbc labs normal. I hurt in joints but I have lupus and APS So there is that too. Scared

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1 reply
mcwjr189 | @mcwjr189 | Jun 24 2:20pm

Hi, I was diagnosed with hyper cellular carcinoma in my liver in Sept of 2021. After checking for spread we found nothing else. In Oct the tumor was removed and it was quite large, 3-4 lbs. A biopsy was done following removal and it was determined to be a solitary fibrous tumor. Sarcoma. No further treatment was recommended. After quarterly cat scans it was found in my lower right lung and removed robotically in Oct of 2023. No further treatment but last scan in June showed 4 metastasized nodules in my left upper lung. New treatment is targeted chemo. I know this is rare but wondered if anyone had good results with this method. Thanks, MCWJR189

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1 reply
mhils | @mhils | Jun 22 7:31am
In reply to @colleenyoung "@mhils, yes, there is always hope. I invite you to join the discussion here: - Solitary..." + (show)
@colleenyoung

@mhils, yes, there is always hope. I invite you to join the discussion here:
- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/
- Solitary fibrous brain tumor WHO Grade 3.
https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/
If you would like to find out more about clinical trials available through Mayo Clinic, you can search the database or call to talk with a study coordinator. See more here:
- Find clinical trials https://www.mayo.edu/research/clinical-trials
Contact for cancer-related clinical study questions
Phone: 855-776-0015 (toll-free)

How are you doing on pazopanib? Any side effects?

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Hi, thanks for the invitation to join this support group. Side effects from pazopanib have been minimal since moving to the lowest dose (primarily extreme bouts of diarrhea) three years ago. Radiation treatment side effects have caused neuropathy in my right leg beginning in the toes now up to mid thigh which has caused weakness in the muscles and my balance is off. Consequently I have trouble with stairs, hilly terrain, and walking in general. I am told that exercise is key which is not a problem for me, I am an active person and always enjoyed various forms of exercise on a consistent basis (less intense now for obvious reasons). My PT guy suggested acupuncture, I am on my 7th weekly visit and plan to continue for a while (not covered by insurance unfortunately). It is a slow process and it might not disappear, but I willing to try anything to get back to where I was before the neuropathy set in.

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mhils | @mhils | Jun 22 6:55am
In reply to @richard515 "Hello. I have 6 dedifferentiated chondrosarcoma lesions in my left hip femur and ankle. And another..." + (show)
@richard515

Hello. I have 6 dedifferentiated chondrosarcoma lesions in my left hip femur and ankle. And another in the right humerus. The primary was in my right femur. I lost my femur, knee and 3 quads in surgery. I had me tumour tested for the IDH1 gen ed mutation by FoundaOne. It was positive. I have been on a therapy named Tibsovo for 105 days now. My PET scan 2 weeks ago showed early signs that tumour growth had slowed significantly and that the tumour in my arm had actually reduced a little in size. It is all uncertain but does show promise. It might be worthwhile being checked for the IDH1 mutation. The therapy has enjoyed a lot of success for AML and bile duct cancer. I am happy to provide more information. My name is Richard..

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Richard, thanks for your response. In my post I meant to say I had 30 rounds of radiation in 2005 (not MRIs) as a precaution to prevent recurrence. I was completely blindsided by the Stage 4 metaststasis 15 years later. I was a very healthy, active person and had no idea this thing was growing elsewhere in my body. Follow up MRIs continued for 4 years and stopped there. I thought I was cured. I often wonder if intermittent checkups would have changed where I am now. Anyway, the folks at Dana Farber identified my mutuation early on but I will certainly ask about Tibsovo and whether that is an option for me. It sounds very promising for you which is wonderful! Pazopanib has stopped my cancer dead in its tracks for 3 years now, which is buying me some time for a cure. So I am cautiously optimistic and feel I am in good hands; however, would like to stay informed of other treatments and find support with others who are in similar situations. Up til now I am dealing with this privately among immediate family and a few friends. I’d like to think my glass is half full, living my best life as well as I can. Because of this disease, retirement found me before I found IT, which was another adjustment after 40 years of work work work but the gift of free time is pretty great so far.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 21 11:48am
In reply to @mhils "Hello, I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly..." + (show)
@mhils

Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.

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@mhils, yes, there is always hope. I invite you to join the discussion here:
- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/
- Solitary fibrous brain tumor WHO Grade 3.
https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/
If you would like to find out more about clinical trials available through Mayo Clinic, you can search the database or call to talk with a study coordinator. See more here:
- Find clinical trials https://www.mayo.edu/research/clinical-trials
Contact for cancer-related clinical study questions
Phone: 855-776-0015 (toll-free)

How are you doing on pazopanib? Any side effects?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 21 8:48am
In reply to @happywiredhope1 "pleomorphic sarcoma" + (show)
@happywiredhope1

pleomorphic sarcoma

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@happywiredhope1, I invite you to take part in this related discussion to connect with others with they same type of sarcoma:
- Undifferentiated Pleomorphic Sarcoma
https://connect.mayoclinic.org/discussion/sarcoma-256d3d/
See all Pleomorphic Sarcoma discussions: https://connect.mayoclinic.org/group/sarcoma/?search=pleomorphic%20sarcoma&index=discussions

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jrs2024 | @jrs2024 | Jun 19 10:03am
In reply to @zazu "I’m sorry you have been going through all of this. Stressful and devastating. Certainly a huge..." + (show)
@zazu

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

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Your journey has been most difficult and I can understand all the emotions you mentioned. I have been diagnosed with very rare breast sarcoma and still undergoing other biopsies to check other organs for cancer before treatment. Life gets very complicated with an illness like this. Jrs2024

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rkhss | @rkhss | Jun 18 4:46pm

Unfortunately the biospy came back as Myxofibrosarcoma MFS. Appears to be low grade but have to get a CT scan of chest to see if it has spread. I'm terrified.

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afeller | @afeller | Jun 17 10:15am
In reply to @bendavid "Hi. I am contacting you for a friend who has Angiosarcoma and has just had his..." + (show)
@bendavid

Hi. I am contacting you for a friend who has Angiosarcoma and has just had his lower leg amputated at the Mayo Clinic, Jacksonville. I would like to know about the Sarcoma Cancer Center that you mention. Where is it and do you recommend it?

Thank you,

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Hi! It’s located in Overland Park, KS. The University of Kansas Health Systems Sarcoma Center. I do highly recommend it!

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