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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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schwannoma | @schwannoma | 14 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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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)
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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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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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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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Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022
In reply to @kai2022 "Thank you for sharing. I was recently diagnosed with MPNST. My PCP has referred me out..." + (show)
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Thank you for sharing. I was recently diagnosed with MPNST. My PCP has referred me out to a Oncologist. I have an appointment this Thursday and don’t know what to expect. I’m so scared , just to know that this is a rare cancer,

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@kai2022, I can imagine you're scared. What did you learn at your appointment with the oncologist?

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Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022

@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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kai2022 | @kai2022 | Nov 15, 2022
In reply to @ricosoriano "The tumor was located just near the back of my right ear so it was kind..." + (show)
Profile picture for ricosoriano @ricosoriano

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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Thank you for sharing. I was recently diagnosed with MPNST. My PCP has referred me out to a Oncologist. I have an appointment this Thursday and don’t know what to expect. I’m so scared , just to know that this is a rare cancer,

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godsgraceandmercy01 | @godsgraceandmercy01 | Oct 2, 2022

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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godsgraceandmercy01 | @godsgraceandmercy01 | Oct 2, 2022

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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Colleen Young, Connect Director | @colleenyoung | Oct 2, 2022
In reply to @godsgraceandmercy01 "Spindle cell neoplasm peripheral nerve sheath tumor Good evening. I was recently diagnosed with spindle cell..." + (show)
Profile picture for godsgraceandmercy01 @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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