Mark from Toronto - Dx 1988 at 18 yo (46 now)

[Bonni Hess]

Dear Anita, Unfortunately and concerningly Mark has not posted or updated the Board for more than three years. Hopefully he was able to obtain treatment to shrink/destroy his lung mets, his disease progression has been stabilized, and he is doing alright, but it is always concerning when people are out of contact for too long given the unpredictable nature of this insidious disease. Regarding your dear son's situation, I am grateful that his multiple lung "nodules" (which unfortunately are most likely ASPS mets) appear to have "reduced in size and number", but based on the unpredictable nature of ASPS, I encourage him to have them more regularly monitored with CT scans twice a year instead of only X-rays once a year, in addition to him having abdominal/pelvic CT scans every six months and an annual brain MRI and full body bone scan. Based on our 16 and a half years of ASPS experience with our dear daughter Brittany's very challenging disease, the lung mets may appear relatively stable, but mets may develop in other areas of the body. Vigilant, appropriate, ongoing, Lifelong scanning is critically important and the doctors and patient CANNOT become complacent due to the unpredictability of this indolent disease as is evidenced by Mark's rare 26 years of disease stability and then the development of new mets and disease progression. With special caring thoughts, healing wishes, and continued Hope, Bonni Hess, mother of now 35 year old Brittany diagnosed at age 19 with Stage 4 ASPS in July 2001