Neurofibrosarcoma - Long Term Survival

mumsmiracle

Hope and Faith - SARCOMA ... a diagnosis that has many long names and a wide range of prognosis and outcomes.  It's a very scary place to be ... fear and the uncertainty of it all.  When our daughter was diagnosed with Neurfibrosarcoma at the age of 21 in 1998, we thought the worst having been given straight up answers .... like, "it's very rare, we don't know too much about this, this cancer is aggressive and highly malignant.  We were devastated. 

Our daughter dropped a box on her shoulder 3 months prior, and as a result a tumour started protruding from her collar bone and the top of her shoulder.  It was an instant diagnosis that it was cancer once we got to the hospital after 3 months of anti-inflammatory medications.  Everything happened very fast after that.  The doctor that did the surgery happened to know about neurofibrosarcoma.  From the time of diagnosis through testing, MRI's (many), CT's (many) healing and treatment and 5 years in clinical trial follow-up.  This was a high grade tumour considered to be aggressive and highly malignant. 

Her positive outlook and nature, helped us her parents a great deal!  One key point in learning about Sarcoma's is that the most desirable outcome is to obtain WIDE MARGIN re-section around the whole tumour, that is key.   The tumour removed, they said was size of a grapefruit or soft ball and they were able to obtain wide margin resection, and said that they did not feel that chemotherapy would be effective, although the tumour was highly malignant it had not metastized to any organs ... that it was sitting on the lung but not attached.  The tumour was in her brachial plexus .... they removed minor pectorial muscle, 1st rib with wide margin resection.  They decided her treatment would be 10 weeks of radiation.  It was painful, but Shawna remained hopeful, high spirited with others, and helped out while many hours of waiting at the hospital with the elderly who had no one to help them find their way around from one place to another in the hospital.  We commend Shawna's surgeon who did the best possible surgery that could have been done ... many surgeon's, teams of doctor's and oncologists were completely impressed with the surgeon's work on Shawna.

Since then their have been periods of foot drop, bell's palsy, carpel tunnel, and electric shock waves in arm and hand, but all of these things have been overcome.  It has been 18 years cancer free and Shawna is 39 and has 2 children.  We thank the good Lord!  We did win the Lottery.

God Bless all of you, Hope and Faith, find strength in someone or something ... pray and stay positive ... Key, wide resection. radiation.

 Mumsmiracle!