Diagnosed with sarcoma? Let's share

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

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.

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.

@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?

@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/

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

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.

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

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,

When I noticed the lump in my upper arm in early 2023 I contacted my primary care doctor, who ordered an ultrasound. Those results were inconclusive, and I was eventually sent to a general surgeon for a biopsy. I opted for an incision biopsy in September, as I had had tumors in my breast in 2020 and did not want to go through waiting for needle biopsy results again (those tumors were benign). The pathology of the tumor removed from my arm was diagnosed as dedifferentiated liposarcoma. I am fortunate to live near a city with a Sarcoma Cancer Center, and was referred there for follow-up tests. They changed the diagnosis to be stage 2, grade 2 pleomorphic liposarcoma and performed a second surgery to ensure all of the tumor had been removed and to take the proper margins. No chemo or radiation was ordered, because the tumor had already been removed prior to me arriving at the Sarcoma Center. I am now in the monitoring phase, and for the next 2 years I will have chest, abdomen and pelvis CT scans every 3 months and an MRI of my right upper arm every 6 months. I live my personal life in quarters, now, which is odd and a little funny, given the fact that I am an accountant and live my professional life in quarters as well. First quarter (Q1) 2024 CT scans were clear, and so were Q2. I just had the first 6 month MRI and am waiting on those test results.

Every time my appointments come up I get so anxious. I try to tell myself it will be okay, that I am fortunate to have acted on finding the lump quickly so it was caught early and the odds are in my favor. It doesn't stop the little voice in the back of my head from asking "Is this the time when I find out it has come back?". Its very nerve racking! One one hand, I have been motivated to live my life in the moment and to stop waiting to do things I have always wanted or always loved to do, but didn't do. Coming so close to touching a possible terminal illness has a way of making a person take their head out of the sand and open their eyes to really see the world. On the other hand, however, is the feeling of being blind-sided knowing that a rare and aggressive cancer could be growing somewhere in my body and I don't know it. I don't feel it. It could be there just hiding and waiting for the opportunity to grow and invade other areas of my body. The lump in my arm was completely painless. In fact, I almost didn't get it checked out! I wish I didn't hold my breath until the test results come back clear and then I can breathe again. I imagine the possibilities if the cancer has returned. How advanced will it be? What will be the treatment plan? How sick will I get? How much time do I have? It all comes down to time in the end. A life measured in quarters; 3 months of living for the moment then a few days worrying and obsessing until test results are in, then 3 more months until the next time. I noticed with this round of tests that I have stopped dreaming of the future beyond 6 months out. I don't know when that happened, I didn't decide to stop dreaming.

I also struggle with anger, and this is where I may lose some of your empathy and compassion, but I do need to say what I am about to say. I am angry because I am fat. Morbidly obese, but I guess now they call it Obesity level III. I have struggled with my weight for more than half my life and had even had some success when I found the lump in my arm. I had been trying so hard, and had lost 45 lbs! It is not lost on me that I may not have found the lump at all had I not lost the weight, but the fact that its liposarcoma just galls me! My first question was "Did my weight give me cancer?". I have found no link between body weight and the causes liposarcoma, even if the "lipo" could mean "Fat or adipose", but it doesn't stop me from wondering. Did I do this to myself? And if I didn't, if obesity has nothing to do with it, then that just sucks! I want something or someone to blame! I want a source for this, some way to tell myself, "Oh yeah, that is what made this happen." Doctors have been telling me for 20 years that I will die from an illness stemming from my weight problems, and I still might, but it is hard for me to wrap my head around my cancer not manifesting out of obesity and, yes, it pisses me off to know that it probably doesn't relate at all. Now, when I am more motivated than ever to change to a healthy lifestyle, it sometimes feels like a mute point. I am still doing it, though, still committed to losing weight and getting healthy, but I ask myself if it is worth it? For the next 3 months, or for Q3, it is! Until I get to the point that nothing more can be done to fight my cancer I will continue to fight the devil that I know, Obesity, and prepare for the possible fight with the devil I don't know, Pleomorphic Liposarcoma.