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.
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.
@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.
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?
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.
@debgayle1, what a remarkable story! I can only imagine the roller coaster of emotions you've been riding for the past 2 years. It sounds like no one was expecting surgery to be a possibility.
In terms of dealing with bowels issues, four months since surgery is not that long (even though I'm sure it seems like it). Have you been told that things will get better with time?
Colleen: Thank you for your reply. My surgery was in Feb 2023, fifteen months ago. Actually I've been told this is not abnormal and can last a lifetime. My last hospitalization for partial blockage was just last month. It's called PRD, or Pelvic Radiation Disease.
I was diagnosed in June 2022 with large stage 3 sarcoma tumor in sacrum. Was originally turned down for surgery because of location and size. Oncologist recommended immediate radiation treatment for palliative care. Went through 28 radiation treatments initially, then went to Northwestern Med for 15 addl. Proton radiation treatments. Finished up in Dec. CT and MRI test results were reconsidered due to amazing destruction of the tumor, and I underwent surgery in Feb 2023 for removal. Successful results with clean margins. CT scan showed 2 nodules in left lung which have not changed any as of Feb 2024. Get CT and MRI every 6 mo. The worse problem I've encountered with the experience is debilitating damage to my gut. Scar tissue and inflammation causes narrowing in my intestines and I've been hospitalized with blockages. I've had diarrhea or constipation ever since the surgery and I guess it'a a small price to pay for survival. I can't travel due to these unpredictable issues and I have to follow a strict diet to avoid other problems. I do miss having a normal life that doesn't tie me to the bathroom.
@debgayle1, what a remarkable story! I can only imagine the roller coaster of emotions you've been riding for the past 2 years. It sounds like no one was expecting surgery to be a possibility.
In terms of dealing with bowels issues, four months since surgery is not that long (even though I'm sure it seems like it). Have you been told that things will get better with time?
I was diagnosed in June 2022 with large stage 3 sarcoma tumor in sacrum. Was originally turned down for surgery because of location and size. Oncologist recommended immediate radiation treatment for palliative care. Went through 28 radiation treatments initially, then went to Northwestern Med for 15 addl. Proton radiation treatments. Finished up in Dec. CT and MRI test results were reconsidered due to amazing destruction of the tumor, and I underwent surgery in Feb 2023 for removal. Successful results with clean margins. CT scan showed 2 nodules in left lung which have not changed any as of Feb 2024. Get CT and MRI every 6 mo. The worse problem I've encountered with the experience is debilitating damage to my gut. Scar tissue and inflammation causes narrowing in my intestines and I've been hospitalized with blockages. I've had diarrhea or constipation ever since the surgery and I guess it'a a small price to pay for survival. I can't travel due to these unpredictable issues and I have to follow a strict diet to avoid other problems. I do miss having a normal life that doesn't tie me to the bathroom.
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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.
@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 ReactionsCorrect. 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, 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?
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
1 ReactionColleen: Thank you for your reply. My surgery was in Feb 2023, fifteen months ago. Actually I've been told this is not abnormal and can last a lifetime. My last hospitalization for partial blockage was just last month. It's called PRD, or Pelvic Radiation Disease.
-
Like -
Helpful -
Hug
1 Reaction@debgayle1, what a remarkable story! I can only imagine the roller coaster of emotions you've been riding for the past 2 years. It sounds like no one was expecting surgery to be a possibility.
In terms of dealing with bowels issues, four months since surgery is not that long (even though I'm sure it seems like it). Have you been told that things will get better with time?
I was diagnosed in June 2022 with large stage 3 sarcoma tumor in sacrum. Was originally turned down for surgery because of location and size. Oncologist recommended immediate radiation treatment for palliative care. Went through 28 radiation treatments initially, then went to Northwestern Med for 15 addl. Proton radiation treatments. Finished up in Dec. CT and MRI test results were reconsidered due to amazing destruction of the tumor, and I underwent surgery in Feb 2023 for removal. Successful results with clean margins. CT scan showed 2 nodules in left lung which have not changed any as of Feb 2024. Get CT and MRI every 6 mo. The worse problem I've encountered with the experience is debilitating damage to my gut. Scar tissue and inflammation causes narrowing in my intestines and I've been hospitalized with blockages. I've had diarrhea or constipation ever since the surgery and I guess it'a a small price to pay for survival. I can't travel due to these unpredictable issues and I have to follow a strict diet to avoid other problems. I do miss having a normal life that doesn't tie me to the bathroom.
Of course! How does that work?
Thank you for sharing. Would you mind if I messaged you directly?