I was diagnosed with hemangiopericytoma grade 3 (now called solitary fibrous tumor) in 2018. I was pregnant and was told the baby was on my sciatica. 4 weeks after my csection I had surgery/fusion for my lumbar spine, the tumor eroded half my vertebrae and nerve roots. My neuro surgeon did an amazing job and despite the vascularity and complications he was able to remove it all. I did radiation to the area for 6 weeks. I had the tumor genetic profiling done to try and find a chemo match. There were none.
My oncologist I was assigned to through the ER wrote down 3 chemos and told me to pick one. I passed on that! (He was let go shortly after)
I've been getting MRIs every 3 months lumbar, then brain and full spine on rotation. CTs of chest, ab, pelvis annually. I was told my best course of action is catch it early, surgery, then radiation. So frequent scans, and also consistent so they can track rates of growth. Long term follow up.
A sarcoma center is key- not just for the drs being knowledgeable, but the radiologist are also trained to find sarcomas on imaging.
I was diagnosed with hemangiopericytoma grade 3 (now called solitary fibrous tumor) in 2018. I was pregnant and was told the baby was on my sciatica. 4 weeks after my csection I had surgery/fusion for my lumbar spine, the tumor eroded half my vertebrae and nerve roots. My neuro surgeon did an amazing job and despite the vascularity and complications he was able to remove it all. I did radiation to the area for 6 weeks. I had the tumor genetic profiling done to try and find a chemo match. There were none.
My oncologist I was assigned to through the ER wrote down 3 chemos and told me to pick one. I passed on that! (He was let go shortly after)
I've been getting MRIs every 3 months lumbar, then brain and full spine on rotation. CTs of chest, ab, pelvis annually. I was told my best course of action is catch it early, surgery, then radiation. So frequent scans, and also consistent so they can track rates of growth. Long term follow up.
A sarcoma center is key- not just for the drs being knowledgeable, but the radiologist are also trained to find sarcomas on imaging.
@lazylynn24, it is encouraging to hear your story. I can hardly imagine dealing with a cancer diagnosis and treatment with a newborn. Am I understanding correctly that since surgey and 6 weeks radiation in 2018, your treatment has been active surveillance with regular scans? How do you manage scanxiety?
@lazylynn24, it is encouraging to hear your story. I can hardly imagine dealing with a cancer diagnosis and treatment with a newborn. Am I understanding correctly that since surgey and 6 weeks radiation in 2018, your treatment has been active surveillance with regular scans? How do you manage scanxiety?
Correct. Scanxiety is so hard. I do really enjoy art, so I try to start a project the week of scans/appts. My therapist (highly recommend one of those lol) told me to do something with my hands, art, crafts whatever. It gets your brain out of "active" thinking and gives it a chance to relax and recharge.
I clear my schedule, ignore phone calls. I make sure I'm listening to my favorite music and dance around with my kiddos. A good fictional book to take my mind off things.
As a woman, hormones can play a factor for me, during certain times of the month I'm way more anxious and my body is more sensative to pain. So if I can I try to schedule away from those times.
Journaling (and Im not a journaling girl!) But something about getting your thoughts on paper and out of your head can really help.
Correct. Scanxiety is so hard. I do really enjoy art, so I try to start a project the week of scans/appts. My therapist (highly recommend one of those lol) told me to do something with my hands, art, crafts whatever. It gets your brain out of "active" thinking and gives it a chance to relax and recharge.
I clear my schedule, ignore phone calls. I make sure I'm listening to my favorite music and dance around with my kiddos. A good fictional book to take my mind off things.
As a woman, hormones can play a factor for me, during certain times of the month I'm way more anxious and my body is more sensative to pain. So if I can I try to schedule away from those times.
Journaling (and Im not a journaling girl!) But something about getting your thoughts on paper and out of your head can really help.
@lazylynn24, ohhh, I love the idea of starting an art project the week of the scans or appointments! Such a healthy and meditative, dare I say productive, distraction without actual avoidance.
Just found this support group. I have been dealing with SFT since 1995. First one was egg size in my neck and could not diagnose in Canada. Biopsy went to the USA. Had 5 weeks radiation. Followup every year with not one scan till 2016 when I felt lump in breast. Biopsies and sent to USA and it was another SFT. So they did a scan and found 17cm one by liver, 10cm in uterus some in liver and kidney. Tried Sutent for 2 years with no success and it was horrible. Finally a surgeon agreed to try and the removed ine breasr in 2017 and part of liver with the tumor in 2018. I felt great afterwards. Yhen 2021 renal cell carcinoma and radiation. 2022 partial stomach removal for SVT. 2022 also radiation for SVT in kidney. 2023 radiation to 3 liver tumors for SVT. I am currently 55 years old and very active and feel great in between all these surgeries and treatment. Currently liver tumors are 2 cm and growing slowly.
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I was diagnosed with hemangiopericytoma grade 3 (now called solitary fibrous tumor) in 2018. I was pregnant and was told the baby was on my sciatica. 4 weeks after my csection I had surgery/fusion for my lumbar spine, the tumor eroded half my vertebrae and nerve roots. My neuro surgeon did an amazing job and despite the vascularity and complications he was able to remove it all. I did radiation to the area for 6 weeks. I had the tumor genetic profiling done to try and find a chemo match. There were none.
My oncologist I was assigned to through the ER wrote down 3 chemos and told me to pick one. I passed on that! (He was let go shortly after)
I've been getting MRIs every 3 months lumbar, then brain and full spine on rotation. CTs of chest, ab, pelvis annually. I was told my best course of action is catch it early, surgery, then radiation. So frequent scans, and also consistent so they can track rates of growth. Long term follow up.
A sarcoma center is key- not just for the drs being knowledgeable, but the radiologist are also trained to find sarcomas on imaging.
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1 Reaction@lazylynn24, it is encouraging to hear your story. I can hardly imagine dealing with a cancer diagnosis and treatment with a newborn. Am I understanding correctly that since surgey and 6 weeks radiation in 2018, your treatment has been active surveillance with regular scans? How do you manage scanxiety?
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Like -
Helpful -
Hug
1 ReactionCorrect. Scanxiety is so hard. I do really enjoy art, so I try to start a project the week of scans/appts. My therapist (highly recommend one of those lol) told me to do something with my hands, art, crafts whatever. It gets your brain out of "active" thinking and gives it a chance to relax and recharge.
I clear my schedule, ignore phone calls. I make sure I'm listening to my favorite music and dance around with my kiddos. A good fictional book to take my mind off things.
As a woman, hormones can play a factor for me, during certain times of the month I'm way more anxious and my body is more sensative to pain. So if I can I try to schedule away from those times.
Journaling (and Im not a journaling girl!) But something about getting your thoughts on paper and out of your head can really help.
@lazylynn24, ohhh, I love the idea of starting an art project the week of the scans or appointments! Such a healthy and meditative, dare I say productive, distraction without actual avoidance.
Art heals. You might be interested in joining and reanimating this discussion among fellow artists:
- Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
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2 ReactionsJust found this support group. I have been dealing with SFT since 1995. First one was egg size in my neck and could not diagnose in Canada. Biopsy went to the USA. Had 5 weeks radiation. Followup every year with not one scan till 2016 when I felt lump in breast. Biopsies and sent to USA and it was another SFT. So they did a scan and found 17cm one by liver, 10cm in uterus some in liver and kidney. Tried Sutent for 2 years with no success and it was horrible. Finally a surgeon agreed to try and the removed ine breasr in 2017 and part of liver with the tumor in 2018. I felt great afterwards. Yhen 2021 renal cell carcinoma and radiation. 2022 partial stomach removal for SVT. 2022 also radiation for SVT in kidney. 2023 radiation to 3 liver tumors for SVT. I am currently 55 years old and very active and feel great in between all these surgeries and treatment. Currently liver tumors are 2 cm and growing slowly.