Colleen Young, Connect Director | @colleenyoung | Dec 7, 2022
Hi @amybr, I'm bringing @dbmenger and @zazu into this discussion as they also have experience with spindle cell sarcoma.
I read in another post you made that your husband has had successful chemotherapy to shrink the cancer in the pelvic area and he is now preparing for surgery. How is he doing? How are YOU doing?
He is doing pretty good right now. We are trying to find out more answers about the surgery & are trying to get a 2nd opinion. Have only talked to the surgeon briefly & he said to remove & replace the sacrum. He & I are very nervous about this & don't want to rush into it without talking to others that may have had the same thing or Dr's that might have more experience with this situation. Lots of praying for a Christmas miracle.
He is doing pretty good right now. We are trying to find out more answers about the surgery & are trying to get a 2nd opinion. Have only talked to the surgeon briefly & he said to remove & replace the sacrum. He & I are very nervous about this & don't want to rush into it without talking to others that may have had the same thing or Dr's that might have more experience with this situation. Lots of praying for a Christmas miracle.
Learning more about your situation made me think of members @wsh66 and @me67, who I believe had sarcoma in the pelvic area, possibly involving either the sacrum or sciatic nerve or both. You can read more about @me67's experience here: https://connect.mayoclinic.org/comment/153585/
My husband has had a mass removed from his hand, only to find out 3 days later it is spindle cell sarcoma.
He is currently doing 6 weeks of radiation.
Has anyone else had this?
my tumor was in my leg. it was technically called Myxofibrosarcoma but then have seen it called spindle cell sarcoma in writings.
I had five weeks of radiation ( my tumor was large) then surgery. margins were clear so for now I am on an every three month check up leg and lungs ( have a nodule in my lungs they are watching as this type cancer likes to go to lungs.
I am happy to be cleared at this time , and good to watch it closely.
Good luck with yours !!
That is interesting, my husband also has a nodule in his lung they are watching. They did not clean the margins at the time of surgery because they didn't think it was cancer.
My husband has had a mass removed from his hand, only to find out 3 days later it is spindle cell sarcoma.
He is currently doing 6 weeks of radiation.
Has anyone else had this?
They canceled his 27th treatment on Friday because of an open crack/sore and swelling with questionable coloring. He has three to go. They will evaluate on Monday to see if they have to continue postponing the treatments.
They canceled his 27th treatment on Friday because of an open crack/sore and swelling with questionable coloring. He has three to go. They will evaluate on Monday to see if they have to continue postponing the treatments.
Now, since he has finished his last treatment, they have scheduled the removal of his thyroid. A calcified ridge on the thyroid was found in a PET scan. Testing has shown there is a 50% risk of it being cancer. He is on medication for his thyroid, so it was recommended to have it completely removed.
Does pleomorphic spindle cell sarcoma attach to thyroids?
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Hi @amybr, I'm bringing @dbmenger and @zazu into this discussion as they also have experience with spindle cell sarcoma.
I read in another post you made that your husband has had successful chemotherapy to shrink the cancer in the pelvic area and he is now preparing for surgery. How is he doing? How are YOU doing?
He is doing pretty good right now. We are trying to find out more answers about the surgery & are trying to get a 2nd opinion. Have only talked to the surgeon briefly & he said to remove & replace the sacrum. He & I are very nervous about this & don't want to rush into it without talking to others that may have had the same thing or Dr's that might have more experience with this situation. Lots of praying for a Christmas miracle.
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3 ReactionsIt's a good time for miracles, Amy. 🙂
Learning more about your situation made me think of members @wsh66 and @me67, who I believe had sarcoma in the pelvic area, possibly involving either the sacrum or sciatic nerve or both. You can read more about @me67's experience here: https://connect.mayoclinic.org/comment/153585/
I also wonder if proton beam therapy has been discussed as a potential option for your husband. See this Mayo Clinic Q&A interview with Dr. Safia Ahmed, a radiation oncologist at Mayo:
- Proton beam therapy spares surrounding tissue when treating bone cancer https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/proton-beam-therapy-spares-surrounding-tissue-when-treating-bone-cancer/
My husband has had a mass removed from his hand, only to find out 3 days later it is spindle cell sarcoma.
He is currently doing 6 weeks of radiation.
Has anyone else had this?
my tumor was in my leg. it was technically called Myxofibrosarcoma but then have seen it called spindle cell sarcoma in writings.
I had five weeks of radiation ( my tumor was large) then surgery. margins were clear so for now I am on an every three month check up leg and lungs ( have a nodule in my lungs they are watching as this type cancer likes to go to lungs.
I am happy to be cleared at this time , and good to watch it closely.
Good luck with yours !!
-
Like -
Helpful -
Hug
2 ReactionsThat is interesting, my husband also has a nodule in his lung they are watching. They did not clean the margins at the time of surgery because they didn't think it was cancer.
@abartels, how is your husband's radiation going?
They canceled his 27th treatment on Friday because of an open crack/sore and swelling with questionable coloring. He has three to go. They will evaluate on Monday to see if they have to continue postponing the treatments.
He has finished his last treatment.
Now, since he has finished his last treatment, they have scheduled the removal of his thyroid. A calcified ridge on the thyroid was found in a PET scan. Testing has shown there is a 50% risk of it being cancer. He is on medication for his thyroid, so it was recommended to have it completely removed.
Does pleomorphic spindle cell sarcoma attach to thyroids?