Update to let everyone know that we have been home for a little more than a day.
Late yesterday afternoon I had a brief phone conversation with one of William's nurses, on our behalf she discussed William's bone scan with the oncologists here at Sutter. It seems that the oncologists are not convinced that the new finding in William's sinus is cancer (at least not DSRCT). Their reasoning is "DSRCT does not occur in that area". The doctors don't have an explanation of what the new finding is but statistics and medical facts tell them that it is not cancer. So, after hearing this from the nurse and speaking with Randell, we have decided that we want a new diagnoses.
In January a fellow DSRCT patient was re diagnosed with Ewings sarcoma, a cancer that is extremely similar to DSRCT but occurs in the bones. No one knows if his initial diagnoses was wrong or if his cancer changed into Ewings; eitherway, it is something that has me wondering if William has Ewings too.
If William does have Ewings then this would explain the rapid cancer growth in the bones and also the cancer in the sinus.
I am not sure if our current oncology team would be willing to do a re diagnoses, nor am I sure that I would want them too...... Long story short, City of Hope in LA will most likely be our new home hospital. There are still a lot of facts for us to consider, questions to ask and statistics/logistics for us to workout but, there is a strong possibility that William and I will be relocating to LA. I will have more details on Monday afternoons.
Keep on keeping on.
Live Strong in God's promise of healing.
4 comments:
What a turn of events. You've all been on such an emotional roller coaster that clearly, we will continue to pray and take your relocation as God's will for you to take William to Disneyland! :) I highly recommend the Indian Jones ride.
Lois, I would be a bit more suspicious of any oncologist who might make the statement that DSRCT does not occur in this location - there is a definitive way to find out if William has DSRCT or Ewings - but you would need a sample of his tumor. DSRCT has a unique translocation between t(11:22)(p 13; q 12) that involves the EWSR1 and the WT1 genes. If William tests positive for this translocation than he has DSRCT. A sample of his tumor sent to Sharon Weiss, MD (she is the specialist for identifying most soft tissue sarcoma and has written the book that all pathologist follow)
http://pathology.emory.edu/AdminFacultyMember.cfm?Name_seq=423
Love to you,
Patty R
I guess I wasn't very clear after re-reading my comment. DSRCT has been reported to occur in the sinus and in the bones of some patients - which is not to say that William has DSRCT in these locations . . but for a doctor to make the comment that "DSRCT does not occur in this area" . . they are wrong. Ehhhhh! In either case his doctors should know that DSRCT just happens to be one of the sarcoma's that can be definitively diagnosed without GUESSING. There is a DEFINITIVE test for DSRCT.
Patty R
A t (11; 22) (p13; q12) EWS-WT 1 positive desmoplastic small round cell tumor of the maxilla: An unusual case indicating the role of molecular diagnosis in round cell sarcomas
http://www.bioline.org.br/request?jp10055
Post a Comment