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Malignant Peripheral Nerve Sheath Tumor

Posted by ricosoriano @ricosoriano, Sep 19, 2022

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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stellacammarano | @stellacammarano | Dec 6, 2022
In reply to @colleenyoung "@stellacammarano, you mentioned in another discussion that son was diagnosed with peripheral nerve sheath cancer just..." + (show)
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@stellacammarano, you mentioned in another discussion that son was diagnosed with peripheral nerve sheath cancer just a few weeks ago. While he had successful surgery and his CT and MRI scans are clear, you have been getting contradictory information.

Can you explain more about the contradictory information you or your son is getting? What questions do you have?

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Hi there.
His oncologist put forward a treatment plan of 6 weeks of radiation 10 minutes a day 5 days a week... followed by 1 month rest then 3 days of chemo every 3 weeks for 6 rounds. It seemed a lot since his CT and mri were clean. I got a second opinion and this oncologist said only radiation and then a third on oncologist said nothing works for this type of cancer so no further treatment. Its so confusing.

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kelseympnst | @kelseympnst | Dec 6, 2022

Malignant peripheral nerve sheath tumor
I was just told the tumor in my upper spine is cancer. I hope to soon have it removed it’s it is a risky surgery the tumor is 7.7mm by 4.5mm by 2.5mm and wrapped around my vertebral artery and it has pushed my spine significantly. I celebrated my 22nd birthday 6 days ago. I am in severe pain everyday I wait for a call currently for surgery. I am scared. Please connect if you have had this cancer.

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Colleen Young, Connect Director | @colleenyoung | Dec 6, 2022
In reply to @kelseympnst "Malignant peripheral nerve sheath tumor I was just told the tumor in my upper spine is..." + (show)
Profile picture for kelseympnst @kelseympnst

Malignant peripheral nerve sheath tumor
I was just told the tumor in my upper spine is cancer. I hope to soon have it removed it’s it is a risky surgery the tumor is 7.7mm by 4.5mm by 2.5mm and wrapped around my vertebral artery and it has pushed my spine significantly. I celebrated my 22nd birthday 6 days ago. I am in severe pain everyday I wait for a call currently for surgery. I am scared. Please connect if you have had this cancer.

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Hi @kelseympnst, welcome. I moved your post about malignant peripheral nerve sheath tumor (MPNST) to this recent and active discussion:
- Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

I did this so you can read previous posts and connect easily with members like @mbe111 @ricosoriano @godsgraceandmercy01 @kai2022 @stellacammarano @lizbhere @pkindron @julieparton, who also have experience with MPNST.

You may also be interested in connecting with other young adult with cancer in this group:
- Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

Kelsey, I'm sorry to hear that you in constant pain every day. I bet you are scared. This isn't the birthday present you wanted. And it sucks. Are you expected to have surgery soon?

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schwannoma | @schwannoma | 18 hours ago
In reply to @colleenyoung "Welcome, @ricosoriano. So good to hear that surgery was a success and that the malignant peripheral..." + (show)
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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

In 2005 I was diagnosed with a malignant schwannoma of my left thigh, located in the femoral nerve. After it was removed with safe margins, I received strong chemotherapy and radiation therapy. After 20 years, I am experiencing the late effects of radiation therapy, with nerve damage and muscle loss. Is anyone going through the same thing and has any treatment to at least halt the nerve and muscle damage? More recently, as a result of the muscle damage, I am having problems with my knee and a meniscus tear. I need help. Thank you.

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