Nerve Sheath Sarcoma - Cancer Message Board

bigdogs35 · 07-09-2005, 12:19 PM

Hello my name is Rob, and I am going through a second bout of cancer in 3 years. I am looking for any person that my have been diagnosed with cancer as a result of Neurofibromatosis.

As a result of my last surgery last month, my femural nerve in my leg was removed, and I will have to wear a sports type brace to walk. Can anyone share a similar experience, and what type of limitations have you experienced having this nerve removed? Can you swim, bike?

I am in my mid 30's, married with a new 3 month old baby. If you have neurofibromatosis, and can share a similar cancer related story, please e-mail me at [ please read and follow the posting rules - no emails ] or post a message here.

[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]

hillaryb · 07-10-2005, 06:15 PM

About 13 years ago (I was 15) I was diagnosed with a spindle cell sarcoma in my outer-right thigh, which was later called a nerve-sheath tumor. I had it removed, followed by surgery to remove a very large portion of my thigh. I have no sensation there, but have not had a recurrance. Im sorry if this doesn't help you, but I was just so excited to see someone with a nerve-sheath sarcoma. It is very rare and noone here has ever posted about it.

I did have physical therapy, but most of my problems are some muscle weakness. It hasn't caused noticable problems. I'm sorry to hear about your recurrance. I was told that this type of tumor is very rare, and could not be given any stats on recurrances. Does your cancer involve the entire nerve, or muscle tissue as well?

bigdogs35 · 07-12-2005, 12:53 PM

In actuallity, the tumor was sitting upon the femaral nerve and upon the second surgery it had to be removed. Hence, no official walking ability without a permanant brace. Was your tumor as a result of Neurofibromatosis? Do you know anyone with this condition that has been treated for cancer?

dyana · 07-12-2005, 01:30 PM

in 2003 my 24 year old daughter had a liposarcoma (soft tissue sarcoma) removed from her thigh. in order to get clear margins the surgeon also took the entire front femur muscle. she then had 7 weeks high beam radiation which caused alot of scar tissue and nerve damage. Then in 2004 she had a titanium rod and 3 pins inserted into the femur bone to give it strength because the radiation caused the bone to be porous. she is in pain 24/7 and is on pain meds daily which really don't help at all. did you have to have radiation? the doctor said the radiation is what causes the pain, not the surgeries. i hope and pray for your recovery. i don't think i helped at all but wanted to let you know we feel for you.
dyana

hillaryb · 07-12-2005, 06:25 PM

No, mine wasn't a result of neurofibramatosis. Noone has any clue why I got mine, though research has indicated that soft-tissue tumors may be a result of exposure to certain chemicals or pesticides. Funny, for 4 years I lived on a military base that was known as a chemical dumping ground-they actually closed the soccer field when it rained because the chemicals came up through the ground. I was lucky, I did not have radiation, but I did have 5 years of cat-scans every 3 months. My surgery did cause alot of pain (not as much as dyana's daughter, I'm sure) but you kind of learn to live with it. Sometimes when a low pressure rolls through, it can be painful on my leg-I joke it is a weather predicter.

My scar is 26 inches long, and since my wound didn't heal right (infections caused a very large hole that took months to close) it isn't pretty. Dyana, I am sorry about your daughter. I hope with time her pain improves. Someone once suggested hypnotherapy for pain, I didn't pursue it as my pain is manageable, but maybe you could look into it. Does she do any type of physical therapy?