@fredkj Sorry for the delay; this one must have slipped through the cracks. I had GIST surgery in August 2021 where they removed an 11 mm tumor from my duodenum. Clear margins and -- so far -- no recurrence. I have CT scans every three months to monitor but no medication or other follow-up has been needed.
You mentioned the GIST support group and, in my opinion, I found it to be a negative experience. A lot of complaining whereas here at Mayo Connect I see (and receive) tons of positive information and terrific support. Again, that's just my two cents.
Hi there,
I’ve been diagnosed with Retroperitoneal Leiomyosarcoma in 2020
I’ve had surgery and removed big tumour including spleen,part of intestines,
and some of lymph nodes.After six months it’s appear to have recurrence and was unresectable. Radiation was next optoin wich seems shrink the tumour.
After 2 years CT scan shows slow progress on radiation site but doesn’t have metastasis on other organs.Surgey is high risc.Is anyone have the same condition and let me know their experience.Is any hemotherapy can help?
Hello All,
I have had GIST for 6 years now.
Diagnosed in 2017 with metastatic disease to my liver. Mets continue to grow.
Primary tumor is in the 2nd portion of of my duodenum and I just keep changing meds to somewhat continue to carry on.
Some days I feel normal other days not as much. My suggestion is to try and find a purpose that inspires passion in yourself and keep on pushing.
Thank you for asking. PET scan was 7 days ago. I am have an appointment with surgeon in about 3 weeks.
I feel kind of lost. The test results are posted to my account, but that does not mean I don’t have lots of questions. I would go somewhere for another opinion, but have no idea how to do that.
As far as I can tell from reading my PET scan, my GIST has not metastasized and may be on my stomach. Doc here said that the PET would show the size, but I can’t find that on the report.
I can imagine you feel a bit lost. Hopefully you'll be celebrating the holidays with family to help pass the time more quickly until you meet with the surgeon.
If you wish to seek a second opinion at Mayo Clinic, you'll find all the info you need to get started here: http://mayocl.in/1mtmR63
Have you started writing down your questions? What will you ask your doc?
Thank you for asking. PET scan was 7 days ago. I am have an appointment with surgeon in about 3 weeks.
I feel kind of lost. The test results are posted to my account, but that does not mean I don’t have lots of questions. I would go somewhere for another opinion, but have no idea how to do that.
As far as I can tell from reading my PET scan, my GIST has not metastasized and may be on my stomach. Doc here said that the PET would show the size, but I can’t find that on the report.
Look into joining the GIST Support International ( gistlistserv)
There is an online support group with a wealth of information and support for patients ,caregivers and families. It has been a lifeline for a dear friend when newly diagnosed Most important is to have a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider.
I have been diagnosed with GIST this week. Fortunately appears to be arising from the abdominal wall rather than an organ. I have little information at this point. It's 14.6 x 12.0 x 16.8 cm upper left quadrant. I'm looking to plug in somewhere for this journey.
Hello @molavica and welcome to Mayo Clinic Connect. I am glad you joined this discussion group and I'm also glad to hear that you are doing better on Imatinib. It sounds as if your surgery to remove the tumor was also successful.
You said that you went to the ER. Was the surgery done after a CT scan or MRI that was done in the ER? What type of symptoms were you having at that time?
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@fredkj Sorry for the delay; this one must have slipped through the cracks. I had GIST surgery in August 2021 where they removed an 11 mm tumor from my duodenum. Clear margins and -- so far -- no recurrence. I have CT scans every three months to monitor but no medication or other follow-up has been needed.
You mentioned the GIST support group and, in my opinion, I found it to be a negative experience. A lot of complaining whereas here at Mayo Connect I see (and receive) tons of positive information and terrific support. Again, that's just my two cents.
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Helpful -
Hug
2 ReactionsHi there,
I’ve been diagnosed with Retroperitoneal Leiomyosarcoma in 2020
I’ve had surgery and removed big tumour including spleen,part of intestines,
and some of lymph nodes.After six months it’s appear to have recurrence and was unresectable. Radiation was next optoin wich seems shrink the tumour.
After 2 years CT scan shows slow progress on radiation site but doesn’t have metastasis on other organs.Surgey is high risc.Is anyone have the same condition and let me know their experience.Is any hemotherapy can help?
Hello All,
I have had GIST for 6 years now.
Diagnosed in 2017 with metastatic disease to my liver. Mets continue to grow.
Primary tumor is in the 2nd portion of of my duodenum and I just keep changing meds to somewhat continue to carry on.
Some days I feel normal other days not as much. My suggestion is to try and find a purpose that inspires passion in yourself and keep on pushing.
-
Like -
Helpful -
Hug
3 ReactionsI can imagine you feel a bit lost. Hopefully you'll be celebrating the holidays with family to help pass the time more quickly until you meet with the surgeon.
If you wish to seek a second opinion at Mayo Clinic, you'll find all the info you need to get started here: http://mayocl.in/1mtmR63
Have you started writing down your questions? What will you ask your doc?
-
Like -
Helpful -
Hug
2 ReactionsThank you for asking. PET scan was 7 days ago. I am have an appointment with surgeon in about 3 weeks.
I feel kind of lost. The test results are posted to my account, but that does not mean I don’t have lots of questions. I would go somewhere for another opinion, but have no idea how to do that.
As far as I can tell from reading my PET scan, my GIST has not metastasized and may be on my stomach. Doc here said that the PET would show the size, but I can’t find that on the report.
Welcome @mizamymac. How did the PET scan go? How are you doing?
https://www.gistsupport.org/gsi-community/join-our-gist-community/
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2 ReactionsHow do I find gistlistserve? I have been newly diagnosed, biopsy confirmed GIST. PET scan next week.
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1 ReactionI have been diagnosed with GIST this week. Fortunately appears to be arising from the abdominal wall rather than an organ. I have little information at this point. It's 14.6 x 12.0 x 16.8 cm upper left quadrant. I'm looking to plug in somewhere for this journey.
Hello @molavica and welcome to Mayo Clinic Connect. I am glad you joined this discussion group and I'm also glad to hear that you are doing better on Imatinib. It sounds as if your surgery to remove the tumor was also successful.
You said that you went to the ER. Was the surgery done after a CT scan or MRI that was done in the ER? What type of symptoms were you having at that time?
-
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Helpful -
Hug
2 Reactions