Peripheral Nerve Sheath Tumors

PeterTN said:

I was just diagnosed with MPNST as well
I was just diagnosed with MPNST. Surgeon at a regional hospital removed what he at first was thinking would be a benign enlarged lymph node in my groin. The Vanderbilt Cancer Center pathologists have identified as MPNST.

I'm curious to know if anyone had second opinion pathology reports performed, or investigated second opinions on treatment plans.

Also, the surgical oncologist that I met with at Vanderbilt biopsied a place on my heel. It came back as melanoma, so I'm fighting two cancers right now.

Dave, I'm particularly interested in how your treatments are going, since it looks like your course of diagnosis/treatment is about 4-6 weeks ahead of mine. I have surgery scheduled on Oct 21 to take out wide margins. What follows is not yet determined. I have PET scans and MRIs scheduled for tomorrow Oct 9 to see if any spread beyond primary tumor sites.

Any good sources of info on MPNST appreciated. I just turned 50, live on a farm in the country, and have a wonderful wife and two daughters age 7 and 11. I've been running 5k's for the last few years and managing to be fairly competitive in my age group, so looking forward to getting back to that as soon as possible.

kansashotmomma said:

My mom was diagnosed 15yrs
My mom was diagnosed 15yrs ago with a mpnst after several relapses it has finally moved into her lymph nodes and is being cared for by hospice. Many rounds of chemo and radiation and she has lived much longer than they ever expected her to. Now I am suffering with the same type of tumor. Also on my sciatic nerve. Good luck and god bless

Diddle08 said:

peripheral nerve sheath
My dad 43 of age was just got diagnosis with malignant peripheral nerve sheath tumor, in is lower left arm! They removed the tumor Feb 10 that they said was not cancer. it came back a month later! He said he wasnt going back! he was gonna deal with it! well about a month 1/2 ago...He stated to fell numbness is him fingers. So he finally when back to the Drs..well she didnt like how it grew back and how much bigger its was this time so she sent him to Washington Cancer center...Well The took it out it wasnt just 1 it was 3 this time..& the one was growin into is muscle. So they had to take some of his muscle out & some fatty tissue..Well they sent that off and it was Cancer(malignant peripheral nerve sheath tumor) The dr said that there was NO way that the first time the other dr took it out that it wasn't cancer!! He just had another surgery 3/11/11 to take more out more muscle, fatty tissue and i don't know what else, they removed A LOT more this time! there was no tumor this time they just wanted to try to take some stuff out to get rid of the cells..Well they sent what they took out and it came back there was no cancer in that! so now he just had another surgery 3/16/11 to do a skin graph bc where they took that stuff out of his arm its basically a whole in his arm! So he is still in the hospital now they got to make sure that they skin graph takes! Then when he heals from thos surgeries he will start radiation, 5days a week. I do not know how long..So i am praying it doesn't come back..she said they will monitor him very closely to make sure it DOSE NOT go to his lungs! then after 2years if it hasn't come back they will expand is visits.. they said as long as it don't come back within 5years he should be okay! i hope it goes away and NEVER comes back..I am 21years of age..My dad has 4 kids me, my 2 sisters 17& 14 and my bother 10..i am the oldest of us 4!And he has to grand baby's my son and daughter under 2 years of age! i have been taking this really bad about my dad! they said this is a very aggressive cancer! i will keep every one in my prayers! & hope everyone who has this cancer(& other cancers) gets threw this! we are all trying to be strong for my dad! & keep his faith up!

kansashotmomma said:

My mom was diagnosed 15yrs
My mom was diagnosed 15yrs ago with a mpnst after several relapses it has finally moved into her lymph nodes and is being cared for by hospice. Many rounds of chemo and radiation and she has lived much longer than they ever expected her to. Now I am suffering with the same type of tumor. Also on my sciatic nerve. Good luck and god bless

ipshita said:

I've been having some really
I've been having some really bad pains in my right fore arm since late january this year (2011). AIso I felt a small lump in my right forearm. then I went to my GP (general practitioner). After Ultrasound, CT scan, MRI surgeons decided to bring me under knife. My first surgery was on the 11th April, 2011. Right after the Easter holiday, I hear on my next appointment (29th of April) with the surgeon, that my tumour is a malignant one. I have malignant nerve sheath tumour!! it's also called Neurofibrosarcoma. I was scheduled for my next surgery within 2 days of time. this time they took out my whole ulnar nerve and some muscles too. Now i'm recovering from my surgical wounds and starting my Radio therapy from next week (1st of June,2011). the radio therapy wil be going on for 5 weeks, daily for 15 mins, monday-friday.After that I'll be starting Chemo for 5 months! due to which i was told, I'm gonna lose all my hair and everything. it could effect my fertility as well. Being only 23, and having this rare type of nasty cancer, it all seems really difficult to me. Sometimes I just can't accept that all of this is really happening to me. The poor prognosis is really scary!! so yes, positive stories from people with same condition would be really encouraging.

My husband was diagnosed with the same cancer in 2011.  The tumor showed up on the underside of his left arm, near the hand.  He was treated immediately at UPenn, by the very doctor who spearheaded the new treatment option of massive radiation to shrink the tumor, before surgicallly removing it.  CAT Scans showed 2 granulomas in his lungs, and a spot on his knee.  Neither of these were biopsied and I don't know why, in hindsight.  He underwent a total of 5 surgeries: the one to remove the tumor took 10 hours.  Other surgeries were cosmetic, to repair his arm with skin grafts from his thigh.  The massive radiation he recieved caused a systemic fungal infection, which no doctor ever addressed.  He was told to return for more tests every 6 months, on his lungs and his knee, and he did this for the first year and a half but then decided not to undergo any more as his fungal infection was out of control and all of his attempts to build his immune system back would be destroyed by more radiation from x-rays.

My husband (his name was Chuck), spent thousands of hours researching fungal infections, and changed everything in his diet and intake of any and everything, to combat the infection.

Over the winter of 2013 he started experiencing back pain, which he thought was a pinched nerve, as he had a very bad back, and a cough, which he thought came from the die off of the fungal infection.  The pain worsened, as did his cough, throughout February and in March of this year I took him to the ER, where they ran a CAT Scan and found a massive tumor in his left lung, with a smaller one in his right lung that had collapsed the bottom 1/3 of the lung.  He was hospitalized and more tests run.  On our own, we found large tumors in both legs, his groin and his pelvis and treatment was no longer an optiion, so we called hospice.

He died 3 weeks later, his body riddled with cancer.  It was a complete nightmare and I'm devastated by his death, as he was the love of my life.

Yes, we chose not to continue the 6 month check-ups, but, as we were told by the doctor who recently diagnosed him, it would have been chasing tumors.  These doctors were astonished that the granulomas weren't biopsied initially.  Had the cancer been diagnosed upon its' return, we would have been fully involved in the nightmare round of chemo/radiation/surgery until there was nothing left to do, and he died anyways.

Instead, we continued our lives as soon as the surgeries were done.  We were told that if the cancer showed up again it would be in his lungs, and they were right (which makes me question yet again why they didn't biopsy the granulomas.  They said they could be scars from pneumonia or bronchitis, neither of which Chuck had ever had, but apparently that didn't raise a flag).  And we were told that there was a 98% chance that he was cancer free and it wouldn't return.

We'd sold our home and most of our belongings before his cancer happened, and went on the road, traveling the country, calling ourselves Happily Homeless.  We stayed put for his surgeries when the inital cancer showed up, and were all the way across country when it reappeared.  Chuck was dead within 3 weeks but we documented every horrible, beautiful, moment of his illness and death and shared it with our family and friends across the country. 

I don't know why they didn't biopsy his lungs.