gmane.culture.support.teratoma

Re: limping?

cc — 2011-02-11T18:06:00

Yes I am still worrying about it but it is getting better so just need
to keep an eye on it!
Thanks again for all your help hopefully I will not need it again!
But I am happy to try and help anyone who may need it xx

On Feb 6, 4:38 pm, u...< at >att.net (Una) wrote:

Re: limping?

Una — 2011-02-06T16:38:05

That is great news about the MRI, also good news that the limping seems to
be resolving.  Your little boy's limping is still cause for concern, though,
isn't it?  You are a good mother, not to simply deny your fear and pretend
there is no cause for concern.

Una

Re: limping?

cc — 2011-02-06T14:33:28

Hi I just thought I would give you an update on my son,
he had his MRI on Friday but by time we took him for it his limp had
started to get
better so we had started to feel that it was not a recurrence but
obviously wanted to be on the safe side and still have MRI.
On first looks apparently the MRI looks all clear so thankfully looks
like he has had us worried over nothing!
He is still limping a bit but much better now I will keep an eye on it
as don't have a clue what has caused it but luckily he seems to be ok.
Thanks again for all your help I am actually clad it happened as it
made me do my homework on teratomas and I now understand them much
better.

cc x

On Jan 29, 10:08 pm, u...< at >att.net (Una) wrote:

Re: limping?

Una — 2011-01-29T22:08:21

Yes, long periods of wait and see are very stressful.  And yes, I will
do all I can just as fast as I can.  So will you.  This group is here
for people like us.



There is no world research group, and all existing protocols are based on
data collected in certain subsets of patients worldwide:  United States,
United Kingdom, Germany, Italy...  However, the protocols are not very
different from each other.  In my daughter's case, it was very much up in
the air whether the best approach should be aggressive chemotherapy and
surgery, or wait and see.  Wait and see involved a very long and thorough
MRI of both pelvis and abdomen (basically a double MRI), a very thorough
physical examination, AFP tests weekly then monthly, and close monitoring
by me of her diapers.  At the slightest sign of constipation I tended to
have an emotional firestorm.  Any change for the worse and we would have
started on the chemotherapy route.



Before now you never needed to know.  We all start out ignorant about so
much.  When I was pregnant I thought surgery would end or nearly end the
travail.  Only later did I grasp what the AFP testing and followup scans
were for.



Please call the radiology department and discuss this with their scheduling
nurse.  MRI can be done on a sick child;  it just involves higher risks.
You're better off waiting, unless his limping progresses or any new signs
develop.  Remember that for the MRI they'll want an empty stomach etc., so
to get a same day scan you will need to have an idea in advance what time
the scan would occur.


You are very welcome.  I am here to help.

Una

Re: limping?

cc — 2011-01-29T21:36:19


On Jan 29, 8:17 pm, u...< at >att.net (Una) wrote:

That must have been so hard just having to wait and see if it
develeoped into anything else!  I really hope that things stay as they
are for you, but she obviously has a mum that is going to make sure if
anything does start changing it will be sorted asap and in the best
way possible.

I find it strange that the protocl seems to vary so much, it makes it
hard to know which to go by!  Thankgod you are such low risk compared
to before now.  What a tough little girl you must have!

To be honest i really dont know much about doctors we only ever see
the surgeon and i have never thought to question that untill now, when
the surgery was done there were many other doctors introduced to us
but things where so stressed at the time i really didnt take in who
they were.  Hopefull i will not need this information but at least now
i am so much more aware of who should be involved and who to talk to
about what!

You said in last message about there being lots of cancelations due to
coughs and colds - my son have a very bad cough at the moment so that
will mean he will not be able to have mri yet anyway, so i will wait
till our appointment tuesday and if he is better by then try and get
the mri moved to the same day.

Thanks again x

Re: limping?

Una — 2011-01-29T20:17:36

My daughter seems to be 100%, but AFP does not shoot up like that for no
reason.  The most likely explanation is that she does have some residual
teratoma among the "postoperative changes" visible in her scans, and
briefly the teratoma was growing endodermal sinus tumor.  Pure teratoma
has a relatively low risk of malignancy so as long as there is no rapid
growth and mass effect, presence of some teratoma will not be an emergency
situation.

She is a cancer survivor, and will require at least a low level of tumor
surveillance for the rest of her ife.

There are various protocols for estimating risk of recurrence based on
surgery and pathology findings.  By one protocol, my daughter's initial
risk of recurrence was about 50%.  When her AFP surged so did the risk
estimate, to nearly 100%.  Now we are down to nearly 0%.

Surgeons do relatively little surveillance;  that is why it helps to
consult an oncologist.  Oncologists are experts at surveillance.

You may also want to consider consulting a pediatric neurologist.  A
neurologist may be able to pinpoint where in your son's body the problem
is.  Some SCTs involve the spinal cord.  Try to consult a neurologist
before the MRI, to help focus attention of the radiology team on where
to look and what to look for.  That will determine technical details
of the scans:  which equipment they use, which angles they scan at, etc.

Una

Re: limping?

cc — 2011-01-29T16:55:29


On Jan 29, 3:57 pm, u...< at >att.net (Una) wrote:
Yeah i am hoping and praying that he has fallen over without me
knowing or that maybe its a build up of scar tissue - unfortunatly my
mothers instrict is telling me other wise but i pray that i am wrong!


That must have been an awful year for you all, i am so pleased for you
that it all worked ok and i hope she is doing well now.


I will make a note of that and ask to have that done thankyou.

Our surgeon did tell us that he thought he had removed the entire
tumor and that all should be well but he has always said there is a
risk of it returning.

At the moment both seem to be working as normal but i will keep an eye
on it, i have never been told what to look out for myself so this is
very helpfull.
We only ever see one man he is a consultant pediatric surgeon, he did
the surgery and we have delt with him alone since.  I do not have
copies of those i will have to request them.

Thanks so much i will get reading!

Hopefully i will be giving good news next time i write.  Thanks again
for all your help.

Cc x

Re: limping?

Una — 2011-01-29T15:57:26

CC,

First let me say I am so sorry this is happening.  At this point there
is no confirmed recurrent tumor but the limping is a very scary sign.

My daughter had a surge in her AFP tumor marker.  AFP is a marker for
a second, highly lethal kind of tumor that often occurs in teratomas:
endodermal sinus tumor.  However, MRIs showed no clear evidence of a
recurrent mass, so there was nothing at that point for the surgeons to
do.  Under the German protocol for teratoma management, we would have
started aggressive (and toxic) chemotherapy.  However, the American
pediatric oncology study group for teratomas and related tumors favors
wait-and-see, and that is what we decided to do.  It was a very tense
year, but eventually the AFP did go down.  

Your son's AFP being essentially normal means that if his limping is
due to a tumor, it is a pure teratoma, not an endodermal sinus tumor
or mixture.  He should probably have a blood test for human chorionic
gonadotropin (βhCG), a marker for the second most common other tumor
type found in teratomas:  choriocarcinoma.

The treatment of choice for recurrent pure teratoma is surgery without
chemotherapy.

I have read most of the medical literature on SCTs and teratomas more
generally.  The recurrence rate is generally low but it varies with
certain details of the tumor type and surgery.  The pediatric surgery
literature often states that teratomas are benign and once removed 
that is the end of the matter.  That is usually true, but not always.
Pediatric oncologists tell me that nearly every child they see for a
recurrent teratoma had a surgeon who assured the family all was well.
I know some of these families myself.  I hope yours is not among them.

In your shoes I would talk to the surgeon again and explain that the
limping is getting worse quickly.  Also talk directly to the radiology
department.  They always hold slots for emergency scans, and also they
have a protocol for filling last minute cancellations.  Last minute
cancellations are common with MRIs, because children with coughs and
colds should not be given anesthesia.  The radiologists can even swap
your son's slot with another patient, to scan your son earlier.

You also must closely monitor your son's bowel and bladder function.
A mass in the pelvis can cause obstruction of either, and obstruction
rapidly can become a medical emergency.

Do you have copies of your son's surgery and pathology reports?  You'll
need those.  Do you have an oncologist on your team, who has experience
with solid tumors?  You need one.

Below are a few links to abstracts of papers in the medical literature.
Without reading your son's surgery and pathology reports, I cannot pick
the most relevant papers, but these should cover the bases.  Do you
have a local library that does Interlibrary Loan (ILL)?  The library
can get you copies of the papers for free, likely as PDF to you via
e-mail.  Waiting time can be as little as a few hours, or a day or two.

Hugs,

Una

http://www.ncbi.nlm.nih.gov/pubmed/20599258
Gynecol Oncol. 2010 Oct;119(1):48-52.
Is adjuvant chemotherapy indicated in stage I pure immature ovarian
teratoma (IT)? A multicentre Italian trial in ovarian cancer (MITO-9).

http://www.ncbi.nlm.nih.gov/pubmed/17333214
Pediatr Surg Int.  2007 Apr;23(4):315-22. Epub 2007 Feb 28.
Mature and immature teratomas: results of the first paediatric Italian study.

Re: limping?

cc — 2011-01-29T10:09:53

Hello, i just wandered if you had any advice about reoccurences that
you could tell me.  My sons is still limping and it is getting worse.
We finally have an mri book but not till next friday, our surgeon was
away when i rang and i could only speak to his secretary who was a
lovely lady but didnt really know anything about his condition.
Firstly i was told just to stick to our orginal appointment and only
have the ultra sound but i said that i really wanted an mri.   It
wasnt till our surgeon came back to work yesterday that he said yes we
would need one and by that time next friday was the soonest we could
get an appointment.  We are still going for the ultra sound tuesday so
may find something out then, but it all feels like a long wait!  I
cant find any information on the computer about it,im not really sure
what i want to hear but just want to be ahead of the game!
what is your child storie? if you dont mind telling me? did they have
a  reoccurence then?  you seem the know so much about sct's do you
know of any where i can read up about reoccurences? everything i find
is about a first tumor!  Sorry to ask so much and i dont want to take
up your time but anything you can tell me would be helpfull.
On Jan 22, 8:15 pm, cc <clcorn...< at >uwclub.net> wrote:

Re: limping?

cc — 2011-01-22T20:15:56

Thank you so much, i will contact our surgeon asap.

On Jan 22, 8:03 pm, u...< at >att.net (Una) wrote:

Re: limping?

Una — 2011-01-22T20:03:09

His limping raises the index of suspicion sky high.  Push for an MRI
right now.  Ultrasound will not show a solid tumor unless it is so large
that it displaces hollow organs.  Ultrasound will show a cystic tumor
but not all tumors are cystic.

At various times the internal part of my daughter's SCT was invisible
on ultrasound.  On MRI the tumor was very apparent.

Una

Re: limping?

cc — 2011-01-22T17:02:24

We have a appointment on the 1st of feb for his normal 3 monthly check
up, that is when they do afp, rectal exam and ultra sound.  He had all
of these 3 months ago from that date he has not had a mri since he was
6 months as they only do them at our doctors when something else seems
wrong. His last afp results were 4 so they were still going down. We
live a 3 hour drive from his hospital so dont know how quickly we will
be able to see them but i could ring local doctors to have the bloods
done if you think we should not wait till the 1st?  Thanks for getting
back to me so quickly, you are always so helpfull.

On Jan 22, 2:45 pm, u...< at >att.net (Una) wrote:

Re: limping?

Una — 2011-01-22T14:45:10

Call today.  Is his doctor a pediatrician?  Do you have a surgeon
involved in his surveilance?  When was his last rectal exam?  We do
not have our pediatrician do rectal exams because she does very few
of them and her finger is not educated.  Our surgeon does many and
moreover her finger *knows* what the inside of a child's body should
feel like, and what a different kinds of tumor feel like, so we go
to her for that.

When was his last blood test for AFP?

When was his last MRI?

I know today is a Saturday but call anyway.  Start planning all that
you must do to investigate this ASAP.  You may be able to get the 
AFP blood draw done today.  Hope for the best but plan for the worst.
I am very sorry this is happening to you.

Una

limping?

cc — 2011-01-22T08:38:22

hi again, i only ever seem to come on here when i have a question -
sorry about that!
my little boy is not 19months and in the last week or two he has
started limping, none of us saw him fall over and he is not in any
pain, the limp seems like it is coming from his back as he is limping
with both legs and sort of swaying from side to side when he walks.
does anyone know if this means anything? should i call his doctor
about it? thanks in advance x

Re: afp rise

Una Smith — 2010-05-27T17:57:21

Hi cc!

Depending what "slightly" means, it can be a sign of trouble or nothing
at all.  Before we get into all the possible scary explanations for the
new test results, would you like to post or e-mail the dates and numbers
from your baby's AFP tests after September 2009?  I still have the data
you provided in October when we did this last.  I will send you another
graph.

Una

afp rise

cc — 2010-05-27T15:01:30

Hi i have just been told that the blood test recently taken from my
little one have risen slightly.  Does anyone know if there is anything
else that causes this or is it likely to mean the sct is returning. We
are going for an ultra sound but not till next week so just wanted
some info.

Wondering how MS is doing

Una — 2009-11-07T00:04:54

It is many months since we last heard from MS, pregnant and dealing
with some hard choices concerning an ovarian tumor.  MS, if you are
reading this, I would love to know how you are doing.

Una

Re: SCT babies and sleeping

cc — 2009-10-25T15:41:33

my baby is the same, he wasput on his front to sleep in hospital and
now will sleep no other way i try not to worry the rules are always
changing on this subject anyway.
this site has been really helpfull im so clad i came agross it, i just
hope you saying its been quiet mean all babies are well.

On Oct 25, 2:32 pm, Pologirl <polog...< at >att.net> wrote:

SCT babies and sleeping

Pologirl — 2009-10-25T14:32:21

It is good to see some activity on this group.

The Children's Hospital of Philadelphia has a new "recruiting" page
with a success story about a 7-pound SCT baby with a 3-pound, mostly
external teratoma (10 pounds in all).  One of the issues for this baby
was the medical recommendation that all babies be put down to sleep
only on their back, to reduce the risk of sudden infant death syndrome
(SIDS).  This baby cried and screamed and did not sleep unless the
parents held her.

We struggled with a similar problem.  My SCT baby would sleep well
only on her stomach, before the surgery, after the surgery, and even
now, 3 years later.  It is just how she sleeps best.  While she was in
the neonatal intensive care unit (NICU) the nurses allowed her to
sleep on her stomach as long as she was hooked up to all the
monitors.  Later, they allowed sleeping on her side, well propped.  We
were supposed to keep her off her stomach but within days of coming
home she was able to roll from her side onto her stomach.  We also did
a lot of reading about SIDS and infant sleep in general, and concluded
that poor sleep raised greater health risks than the risk of SIDS.  We
settled on using a very firm mattress and putting a thick sheep fleece
under the bottom sheet.  My SCT baby liked to be face down on the edge
of the fleece, with her head on the mattress.

Pehaps this will be helpful to other SCT babies and their families.

Pologirl

Re: what happens when a sacrococcygeal teratoma grows back

Una — 2009-10-24T22:46:47

cc wrote:

I received CC's data and sent back a PDF graph of the data compared
to normal high and low alpha-fetoprotein in babies, from the best
reference data worldwide.

CC's SCT baby has normal AFP values.  Even the first value, from a
sample taken before surgery, is normal.  That is wonderful.  That is
strong evidence that the SCT was not secreting AFP, in other words
that at the time of surgery the SCT did not include elements of
endodermal sinus tumor.

Congratulations, CC.

Una

Re: what happens when a sacrococcygeal teratoma grows back

Una — 2009-10-21T14:32:41

cc wrote:

Excellent.  You may want a future MRI to be sure.  The most sensitive
test is a repeat MRI so the radiologist can compare "then" and "now";
any differences jump out of the pictures.  How much you want a future
MRI depends in part on the AFP levels and if there is any red flag in
a future physical exam.



Okay, just e-mail them in a reply to this e-mail copy.  Double check
your headers so your e-mail goes to me and not to the list.  You may
have to cut-and-paste my e-mail address to get it from my post into
your reply.

Una