Malignat peripheral nerve sheath tumor, High-grad sacroma

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 said:

Update

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.