Long-term survivors (for Ruth)
Una
anyway, for reference.
Una
http://www.isb.nhs.uk/isbsearch/non-isb-standards/standards-db/getdetail/297/view
National Registry of Childhood Tumours (NRCT)
Name:
National Registry of Childhood Tumours (NRCT)
Type:
Register
Status:
Ongoing
Countries:
* England
* Scotland
* Wales
URL:
http://www.ccrg.ox.ac.uk/
Description:
Cancer in children <15 in Great Britian 1962. Data includes dates, ages of diagnosis/death; tumour site/type, whether entered by trial, geographical area at birth and diagnosis associated congenital/genetic disease; summary of treatment, subsequent cancer
Comments:
NRCT also collects information on a long-term survival from cancer based on a cohort dating back to the 1920s. In order to be included, a patient must have survived for a least 3 years after diagnosis. However, this cohort is not population based and is not nationally representative. Contact: Charles Stiller Registry Director Childhood Cancer Research Group 57 Woodstock Road Oxford OX2 6HJ Email: charles...@ccrg.ox.ac.uk
Applications:
* Cancer Services
* Registers/Registries
Date entered:
12/07/2002
cc <clco...@uwclub.net> wrote:
>
>Thank you thats really helpfull,
>We are currently with a ped consultant at bristol childrens hospital
>im afraid i dont know much about doctors abd so not sure if he is an
>oncologist i will have to ask. The consultant also did the surgery and
>as far as i know that was the only option open to us! We have not been
>told that regular MRI'S are needed, so far we see the consultant once
>a month for bloods to check the AFP and for a rectal examination
>(finger inserted into the bottom). We are also then booked in for
>ultra sound 3 monthly, but the MRI was only suggested when the ultra
>sound showed something. How often should i be expecting them to give
>MRI scans?
>
>On Oct 10, 9:32=A0pm, u...@att.net (Una) wrote:
>> Hello CC,
>>
>> I know I speak for everyone when I say we are sorry you need us, but this
>> group is here for you. =A0Even if most of us just lurk. =A0Please underst=
>and
>> that however painful this is for you, it was painful for each of us and w=
>e
>> may not always be able to cope with our memories.
>>
>> Do you know there is an international protocol for surveillance of infant
>> teratomas? =A0Your baby should have periodic MRIs and the first one is ne=
>eded
>> primarily as a baseline for future MRIs. =A0Your baby also needs periodic
>> blood tests for alpha fetoprotein (AFP). =A0My baby had MRIs every 6 mont=
>hs
>> for a few years, and AFP tests every 3 months or more frequently. =A0At o=
>ne
>> time, every month.
>>
>> Most if not all babies will have suspicious looking scar tissue (sometime=
>s
>> called "post operative changes") on ultrasound and MRI. =A0The repeated M=
>RIs
>> are to look for new changes that happen after healing is mostly complete.
>>
>> Our surgeons told us our baby's teratoma was benign and sent us home with
>> instructions to get the AFP tested. =A0We did that, but then no one was a=
>ble
>> to tell us if the AFP value was good or bad, and I finally started doing
>> my homework. =A0I got a copy of the pathology report for the teratoma and
>> learned its grade was ambiguous, and possibly not benign. =A0I also got m=
>y
>> baby's first medical records and they included other AFP values. =A0Plott=
>ing
>> the values on a chart made for this purpose, we got a curve that strongly
>> suggested our baby was having a recurrence, with the most common secondar=
>y
>> type of tumor that grows from a teratoma: =A0endodermal sinus tumor (EST)=
>.
>> The AFP test is to look for EST. =A0So we got a pediatric oncologist with
>> relevant experience with germ cell tumors, and access to repeated MRIs pe=
>r
>> the international protocol, and we watched the baby carefully. =A0Obtaini=
>ng
>> the protocol surveillance took months to arrange, as not all ped oncs hav=
>e
>> experience with these tumors and not all hospitals will do non-emergency
>> MRIs on tiny babies. =A0The first post-operative MRI showed changes. =A0T=
>he
>> later MRIs showed no new changes, which was good. =A0Eventually her AFP d=
>id
>> normalize, which was better still.
>>
>> The best studies of teratomas in babies are by a German group, and many o=
>f
>> their papers are in German. =A0I read German. =A0Using their numbers, my =
>baby's
>> risk of a recurrence at age 6 months was over 50%, given her AFP and MRI
>> results at that time. =A0Now at age 3 years, her risk is under 1%. =A0Whe=
>w!
>>
>> If your baby does have a recurrence, then it matters very much what kind.
>> An incompletely removed teratoma can keep growing, and teratomas are not
>> sensitive to chemotherapy. =A0Radiation and surgery are options; =A0surge=
>ry
>> is preferred unless the site is inaccessible. =A0Teratomas fortunately ha=
>ve
>> very low malignant potential, so the risk of the teratoma spreading to
>> other organs is very low. =A0However, a teratoma can develop other kinds =
>of
>> tumor, and of these the most common is EST. =A0EST has an extremely high
>> malignant potential (bad), but it is sensitive to chemotherapy (good).
>> Teratoma plus EST sometimes is treated by chemotherapy to knock down the
>> EST followed by surgery to cut out the teratoma. =A0Sometimes it is done
>> the other way: =A0surgery first, then chemotherapy.
>>
>> The bottom line for you is that probably your baby is just fine but if no=
>t
>> then you'll want to know it in good time, so that there will be plenty of
>> time to plan and execute the best possible treatment. =A0Even if there we=
>re
>> "nothing" on the US, an MRI is still called for.
>>
>> Discovered in time, the outcome usually is excellent. =A0What just breaks
>> my heart, and our oncologist's heart too, is the number of babies sent
>> home by surgeons with comforting assurances that the tumor was benign
>> and/or completely removed, surveillance not needed, and years later the
>> child turns up in a pediatric cancer clinic with late stage cancer. =A0Do
>> not let your baby be one of them.
>>
>> You should be consulting a pediatric oncologist. =A0Do you have one lined=
> up?
>>
>> If any of the above has raised new questions for you, please don't be shy=
>.
>> Ask questions!
>>
>> Hugs,
>>
>> =A0 =A0 =A0 =A0 Una
--
Una