Malignant Peripheral Nerve Sheath Tumor

Posted by ricosoriano @ricosoriano, Sep 19 8:06am

The tumor was successfully removed surgically and the biopsy result said that it was MPNST low grade. I just want to ask what will the next step of treatments will look like.

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Welcome, @ricosoriano. So good to hear that surgery was a success and that the malignant peripheral nerve sheath tumor was removed. I'd like to bring in fellow members @sanzbozo @mbe111 @lizbhere @pkindron @julieparton, who also have experience with MPNST had treatments they had or didn't have following surgery.

Rico, were you told that the tumor was removed with clear margins, meaning that the entire tumor and a small margin of healthy tissue that surrounds it was removed? If yes, you might not need further treatment. If they suspect spread or the margins weren't clear, you might discuss chemo or radiation with your team.

How was surgery? What kind of rehabilitation will you require to regain mobility?

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@colleenyoung

Welcome, @ricosoriano. So good to hear that surgery was a success and that the malignant peripheral nerve sheath tumor was removed. I'd like to bring in fellow members @sanzbozo @mbe111 @lizbhere @pkindron @julieparton, who also have experience with MPNST had treatments they had or didn't have following surgery.

Rico, were you told that the tumor was removed with clear margins, meaning that the entire tumor and a small margin of healthy tissue that surrounds it was removed? If yes, you might not need further treatment. If they suspect spread or the margins weren't clear, you might discuss chemo or radiation with your team.

How was surgery? What kind of rehabilitation will you require to regain mobility?

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The tumor was located just near the back of my right ear so it was kind of an easy operation, no necrosis were found and yes a small margin of healthy tissues were removed. Just need to regain my sense of balance as I get dizzy still. I just got the histopathology result and is just waiting for my official talk with my doctor regarding further treatments, just wanting to have other's experience and point of view regarding this, Thank you very much!

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Which nerve behind your ear? What does that nerve control? What caused the tumor?
My tumor was a result of previous radiation applied after surgery for throat cancer. At the time they used photon radiation on me, today they would have used proton radiation and there would not been overspray of radiation; I would still have my ulnar nerve. Difficult to live without it.

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Spindle cell neoplasm peripheral nerve sheath tumor
Good evening. I was recently diagnosed with spindle cell neoplasm peripheral nerve sheath tumor. Has anyone else been diagnosed with this?

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@godsgraceandmercy01

Spindle cell neoplasm peripheral nerve sheath tumor
Good evening. I was recently diagnosed with spindle cell neoplasm peripheral nerve sheath tumor. Has anyone else been diagnosed with this?

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Welcome, @godsgraceandmercy01. It can be so challenging to find others to connect with when you have a rare tumor type like spindle cell neoplasm peripheral nerve sheath tumor. For this reason, I moved your post to this existing discussion:
– Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

I did this so you can connect with @ricosoriano and @mbe111.

As we wait for others to join in, can you share a bit more about you? Is this a recent diagnosis for you? What treatments have you had or are expecting to have?

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Hi, so the PETscan said thymic tumor on 8/31/2022. Lung biopsy was done at NYU Langone in Long Island but pathologist couldn't determine for sure so specimen was sent to Sloan Kettering Hospital. Surgery for a median sternotomy is scheduled for 10/17/2022. My thoracic surgeon said that I may need radiation but he's not sure

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The tumor is located in my thymus. In June of this year I started having chest pains that would wake me up. I also started having drenching night sweats (which I've experienced about a couple years now). But it was the chest pains that caught my attention. Also I have been having a low grade fever, swollen lymph nodes and an earache from June of this year.
I have also been experiencing pain in my hands but especially my left leg, the big toe on my left leg as well as the bottom of my feet.
Not sure if this will help but I'm 48 yrs old

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