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Malignat peripheral nerve sheath tumor, High-grad sacroma

ratbat
Posts: 3
Joined: Dec 2012

Hi, I was just diagnosed with MPNST in Nov 2012. This is a sarcoma. Mine is in the center of my sciatic nerve in the upper part of my right leg behind the femor. I just started radiation treatment for 5 days a week for 5 weeks. My choises were amutate or take out the sciatic nerve. I decided to go with taking out the sciatic nerve. Hope this was the right decision. The doctors told me that amputation would be 100% cancer free in leg(of cource) or 90% cancer free if they take only sciatic nerve out. Both of these option still caried a 50/50 chance that they would reappear. They said I would need to have a CT, MRI, and Pet scan every 3 months for at least 2 years. Been trying to find as much info as possiable but not having much luck. I'm told is very rare and probabley why I can't find much info. If there is anyone out there that could share or direct me to some info that would be much appreicated, internet or good books. I'm worried that during surgry they will find more cancer and would need to amputate my right leg. The size of my tumor is just under 5cm so would not need cemo I was told at this time only radition. After surgry I was told I would need to wear a brace from my knee down to my foot due to drop foot from operation. Could anyone who have had this let me know how things went for them. I'm 56 years old man and feel I have a lot of life left. I don't even feel like I have cancer. Other than problerms with my right leg from this I feel fine. I have only knowen for a month so this is all new to me. My operation is taking place at Mayo in Rochester MN some time in late February or early March of 2013. I feel good about my doctor doing the surgary. Mayo is a great place to be from my understanding with a problems like this. I just wish I knew more about this cancer. Been looking as much on the internet on this and alot of what I see in some of these blogs is it ends up with amputation at some point and time. As much as I hate to think about it I'm also interested in average life span after being diagnosed. My doctors have said nothing about any stages or any length of life span. Its scary to think about it but somewhat have this need to know what an averege life span is once you know. Hope you can read this and I get some replys. Been looking for what seems like forever. Thank you for taking the time to read my post. Please tell me where I can find more info. Thank You.

natmcg
Posts: 113
Joined: Jun 2012

I do not know about your type of cancer but I have seen similar headings posted here. You need to scroll to the bottom of this page then go to page 2 or 3. Try emailing or sending personal message(PM) through this forum to people who you think may be able to help you, I found when I was researching my cancer(which is also rear) that the people have often moved on or use Facebook and don't check these posts anymore ,but if contacted they are only to happy to share their experience. Good luck.
Best wishes for a safe festive season.
Nat mcg

kylescheersmom
Posts: 4
Joined: Jan 2011

My son had an 11cm class III MPNST removed in September, 2010 - it was on the nerve leading to his left leg, and they thought he would lose the use of his leg and bladder, but within a couple of weeks he was fine.  He had chemo and radiation - treatment ended May, 2011.  He is fine now, walks well, and only has a few side effects from radiation and chemo.  He is 22 now.

I had a very difficult time finding information on this cancer, so I will let you know what I know.  Do you have NF (Neurofibromatosis)?  50% of MPNSTs are plexiform neurofibromas that turned malignant.  My son has NF.  MPNST can also be caused by radiation (cancer patients with other cancers can get MPNST as a secondary cancer 7 or more years after their radiation).  My son had scoliosis surgery 7 years before his MPNST was diagnosed - they had been doing x-rays on him for years before the surgery, focusing on the area his tumor was found.

You are the 8th person I have "met" with MPNST since my son was diagnosed - this is a rare cancer.  Only four are alive today.  You and another woman I "met" have recently been diagnosed.  A 16-year-old girl in Maine had MPNST in her calf.  She had surgery, radiation and chemo, but it recurred again in 2011, so she had her leg amputated.  Her prognosis is very good because she had it amptated.  Did you know that the movie 50/50 is about Will Riser, who had MPNST?  He is still alive.  My son is still alive - so that makes 5 out of 9.

Why are they waiting so long to remove this tumor?  They had my son's tumor removed within a week of diagnosis, and only waited that long to get the right surgeon.  This is a nasty cancer that likes to spread - usually to the lungs.  From what I have read, survival rates are better for those who do not have NF, and for those who have a tumor <5cm, and for those whose tumor is in an extremity and have amputation.  For large ones, like my son's, or ones near the spine, the life expectancy is 23-28 months.  The best cancer centers for sarcomas, I hear, are MD Anderson in Houston, and UCLA.

Most of my research has been on the internet.  I do searches for MPNST weekly to see what new has come up.  I also have found a foundation, fightsarcoma.org, that has helped me with research.  This cancer likes to come back, so I want to be ready with knowledge of the latest when it does.

I wish you the best.

lcb1966
Posts: 4
Joined: Feb 2011

At 42, my husband started having symptoms in January 2010.  His tumor was not found until October 2010. I don't know how they could have missed the massive 35cm x 11cm x 17cm tumor sitting between his pelvic bones for that long.  His first symptom was getting up on a Saturday morning and not being able to urinate.  I drove him to the emergency room where he was cath'ed and sent to our local urologist.  They focused on it being an enlarged prostate for 10 months. He continued to get worse until they finally ran more tests and diagnosed the tumor.  We new it was malignant sarcoma, but two biopsies could not tell us the specific type.  He started radiation in December 2010, for 5 weeks as well.  His surgery to remove the tumor was not until March 15, 2011.  I saw someone ask you why they were waiting so long to do the surgery.  I asked that so many times with my husband too.  From what I understand, they wait until about 6 weeks after treatment ends before they do the surgery for you to get the full effects of the radiation.  You are very blessed to have been diagnosed so quickly before the tumor grew any larger.  We chose Emory Universtiy Hospital in Atlanta, Ga because it was the closest to where we live.  My husband's tumor had grown so large it caused alot of damage.  They removed his bladder, prostate and he also has two ostomies, colostomy and urostomy.  There is weakness in both legs but the foot drop is only on the right side.  He was confined to a wheelchair for several months but not anymore.  We are convinsed that he went through alot of this because of the delayed diagnosis.  But Praise the Lord, he made it through it all!!  He had MRI's of the chest, abdomin and pelvic areas every 3-6 months after surgery and was clear for awhile.  In May 2012 he had another tumor show up in the right hip muscle.  There was no treatment this time, just surgery in July 2012 to remove a baseball sized tumor.  This is when they told us it was MPNST. An MRI three months after this surgery showed 3 more small tumors in the same hip area.  He just finished another round of radiation.  He will go back to the dr on February 11, 2013 for tests to see if the treatment helped and what to do next. 

How are you doing with your radiation?  You must have just recently finished your treatment.  My husband had loss of appetite and lots of fatige.  Also, I wanted to tell youn that he has tried two braces for the foot drop.  Both are very uncomfortable.  So I'm curious to know what type of brace you have.  Has anyone mentioned the Walk-Aide?  It's a neat little devise that you wear just under your knee with electrodes that shock the nerves to cause your foot to lift up.  My husband tried it, but the nerves were too damaged to even be shocked into moving at the time. Go to their website and read about it, walkaide.com.  The company sent a representative to my husband's physical therapy office.  It's worth a try.  It was covered by our insurance. 

I will keep you and your family in my thoughts and prayers as you get ready for surgery.  And will be checking back for updates.  If you have questions, please ask. 

ratbat
Posts: 3
Joined: Dec 2012

Hi everybody and thank you for all your reply’s.  Well here is the update.  I had the surgery to remove my tumor in my sciatic nerve.  They ended up taking more out in order to get a clean margin.  They said that radiation killed about 90% of the cancer and they removed the rest or all of it in surgery.  They took out 10 inches of my sciatic nerve in my right leg.  Due to this I lost all the muscle in my right leg except above the knee in front.  I now need to wear a brace from below the knee and all the way to my toes.  I have know feeling anymore in my right foot from ankle down.  I’m doing ok with this but somewhat depressed with how I am know.  I know there are a lot of people who are worst off then me and should be glade I can walk.  But this is about all I can do with a cane.  I used to be a very active man.  There is a lot of unfinished work I needed to do on our house.  We planned on selling it and moving into a smaller house for retirement.  I’m not a rich man so about the only way to afford this is doing it myself.   I have a lot of phantom pain in my foot.  This drives me crazy sometimes.  It can be very strong pain at times.  I was in the hospital for 6 days.  The operation only took about an hour but the recovery room took 4 hours.  They had a hard time regulating my pain.  I was in so much pain that I was hoping I would die.  They woke me up after surgery in the recovery room just enough to be a wake to feel this pain.  I’m glad this part is over.  I was in a full leg cast after surgery for 3 weeks for the drop foot.  I went back and that is when they took the cast off and also made a cast of my lower leg so to make the brace.  It’s very uncomfortable but I am alive and glad for that.  I just had my first MRI and CT scan and it showed no sign of cancer.  This was good news.  I go every 4 months for these scans.  Well I felt that I should know how I’m doing.  Sorry it took so long but after surgery I ended up getting busy with Dr. vists, physical therapy and occupational therapy once I had my brace on.  It’s a new way of life now and will take awhile to get used to this.  I figure a good year before I’m finally back to a normal or some type of new normal.  I want to thank you all for your comments.  I will try and check back hear more often.  I hope this finds everybody healthy.  I will keep you all in my thoughts and prayers.  Thank you.

dawoudi
Posts: 2
Joined: May 2013
I hope this email finds you in the best of health!
 
First of all I would like to introduced myself my name is David from Philippines i got your email address in  one mail actually my mom last week had operation in her left leg and after that they make the biopsy and the result is Malignant Spindle Tumor i just want to asked your advice what is the better solution we can do for this please is there possibility to solve this problem and make it free in cancer.
 
waiting for your advice
thank you 
David   
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