High Grade - Malignant Peripheral Nerve Sheath Tumor - Left Arm

JadeFrancis58 Member Posts: 2

Hello :-)

I noticed a small painful area on the top of my arm around two weeks before Christmas and by middle of January it was the size of a large grape.

I was referred to a Neuro & Plastic Surgeon who quickly wanted to remove the lump. 

They believed it to be a Schwannoma which could be removed easily and likely to be benign. 

Unfortunately this wasn't the case and they diagnosed it to be a Malignant Peripheral Nerve Sheath Tumor.

It is a High Grade Sarcoma, which is why it grew so quickly and aggressively.

I have already had one operation to have tumor removed on 3rd March and they managed to remove 95% which is what they perfromed the biospsey on.

I am due back in on Friday 15th March to remove a large section of my arm surrounding the nerve in which the tumor occurred removing the nerve, muscle, tissue and skin and replace with an area taken from my thigh. 

Following this I will require 6 weeks of radiotherapy, I will loose the use of my arm until they are able to perform a tendon transplant later on in the year. 

I would like to know if anyone else has had the same experiance and how you dealt with the treatment and also what life is like after sarcoma. 

I understand it is a very rare form of cancer and I hope I can find someone who shares similar treatments.

Many thanks,

Jade :-) xX