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.
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?
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.
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?
@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.
I am about to undergo surgery for a GIST (approx 3 x 4 mm) in the deep curvature of my stomach. Have felt very little pain except when I vomited blood once and thats how it was discovered. They found a 1 time ulcer and the GIST. Looking forward to getting to the same place you are now. Thanks for posting.
My partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a tentative date for March 8. My worry about waiting is if it spreads to liver or pancreas. But I am feeling great and working every day.
Connect
Connect
Like
Helpful
Hug
-
Like -
Helpful -
Hug
2 ReactionsWelcome @mizamymac. How did the PET scan go? How are you doing?
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?
-
Like -
Helpful -
Hug
2 ReactionsHello 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 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?
@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.
-
Like -
Helpful -
Hug
2 ReactionsI am about to undergo surgery for a GIST (approx 3 x 4 mm) in the deep curvature of my stomach. Have felt very little pain except when I vomited blood once and thats how it was discovered. They found a 1 time ulcer and the GIST. Looking forward to getting to the same place you are now. Thanks for posting.
Welcome @chayatexas @poula and @martiy.
Martiy, when is your surgery scheduled for?
Poula, do you know what type of chemotherapy you will be getting?
Chayatexas, what is your inspiration that keeps you ground and give purpose?
-
Like -
Helpful -
Hug
2 ReactionsMy partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a tentative date for March 8. My worry about waiting is if it spreads to liver or pancreas. But I am feeling great and working every day.
-
Like -
Helpful -
Hug
2 Reactions