Thank you very much for your information. I have been terrible through all of
this and I want to know RIGHT NOW whether or not it is going to come back. I
know that is impossible to know and I always freak out right before she goes
back for scans. Plus there is another boy that we have become close friends with
who has Ewings and his has spread to his lungs. He is being treated at St.
Jude's right now. This is such a terrible disease and to have your child
diagnosed really stinks. I take that back, it is terrible for anyone to be
diagnosed with this. The chemotherapy almost killed her and it devestated us
financially. There have been many, many positive experiences that have come out
of this. We have met several wonderful people that we would have never met
otherwise and it has made us appreciate every day. Good luck with your
treatment and know that you will be in our prayers.

Martha Austin

Bernice/Scott Alcott <scottbernice@...> wrote:
Dear Martha,

I'm scott. 40 years old with soft tissue EWS. I have an 8 year old and a 6
year old so I understand the pain and strain of all of this from the
opposite perspective. It's good, normal and appropriate to be scared but
don't be beaten.

This is a harsh disease requiring harsh intervention and there are no
guarantees. But there are good success rates for cure, remarkably good in
recent years since the aggressive usage of chemo, radiation and surgery
together. Believing in total success for your daughter is not foolish hope,
it is solid outcome to expect with good reasons but again, with no
guarantees.

Statistics are everywhere on the web and I will summarize what i've learned
but with a big footnote: all cancer but especially rare cancers like EWS are
individualized things and the statistics don't tell you about how your case
will come out. There are only a few thousand EWS cases and most of those
cases have huge variance in their presentation and details, so it's hard to
extrapolate. Tiny details like the exact position of the tumor and what it
was near may matter.

Overall, some recent studies show that 2/3rds or more of patients that show
no sign of metastasis at diagnosis (as determined by CT and PET scans) have
long term disease or event-free survival considered "cure". This is provided
that the patient goes to a knowledgeable sarcoma team, gets proper surgery
and goes on the multi-modal chemo and radiation therapy. Those statistics
are good. Those statistics include people who have larger than average
tumors, ones in difficult places and it includes people who couldn't have
perfect wide margin surgery by the way. The statistics are even better if
the original tumor was in the extremeties (like for your daughter having it
in the arm) rather than in the pelvis or spine or rib or head/neck---this is
probably because those other places are less visible and detection is later,
tumor size is bigger and clean, and wide margin surgery more difficult.
Tumors on the arm and leg are often detected when small and they are able to
have clean surgery, a real key. Overall, small tumors (less than 5 cm),
tumors in the distal extremities (arms/legs), and tumors that were able to
be excised with wide margin surgery have high local control rates and are
deemed to be curable. If there are metastasis at the time of diagnosis,
distant recurrence rates are unfortunately high. There are more technical
details that effect cure rate that have to do with specific genetics of the
tumor, its cell binding types and the number of mitoses/grade of tumor. But
often these things correlate with other stats (size, location, presence of
metastasis, etc.).

The treatment protocol is harsh and can create collateral damage to
developing cells, heart tissue and bone marrow. Most of these problems are
recoverable and the risks are small and worth the benefit. Extensive
radiation beyond 6000 cgy's has been shown in children to cause the risk of
secondary cancers approaching 20% including leukemia which can show up even
10 years down the road(these treatment related cancers can also be managed
by the way). But most docs know that EWS doesn't need all that and generally
it is treated at the ~5400 cgy level which keeps the elevated risk of 2ndary
cancer in the single digits. Your doctors are using various drugs to
minimize the negative impact of chemo on things like heart tissue and
bladder. As always, your daughter will be monitored with blood tests and
other diagnostics and adjustments will be made throughout to make sure the
curative benefits are balanced maximally with treatment risk.

Keep us all informed. There's a lot of great people and support here.

Best regards,
Scott

From: "marthaaustin1974" <marthaaustin1974@...>
Reply-To: ewingssarcoma@yahoogroups.com
To: ewingssarcoma@yahoogroups.com
Subject: [Ewings Sarcoma] Hello Everyone
Date: Sat, 04 Nov 2006 01:13:48 -0000

My name is Martha Austin and I have an 8 yr. old daughter who had
Ewings in her right arm. Her last chemo was in April and we go back
for more tests in a couple of weeks. I am scared to death. I am so
afraid of a relapse. Does anyone know the statistics of it coming
back? What about long-term effects of the chemo? I am so glad to have
found this website and I wish everyone the best. God Bless.






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