limping?
cc
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
Una
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
cc
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...@att.net (Una) wrote:
Una
>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 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
cc
cc
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.
>
> - Show quoted text -
Una
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.
cc
On Jan 29, 3:57 pm, u...@att.net (Una) wrote:
> 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.
>
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!
> 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.
that it all worked ok and i hope she is doing well now.
>
> 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.
tumor and that all should be well but he has always said there is a
risk of it returning.
> 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.
on it, i have never been told what to look out for myself so this is
very helpfull.
> 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.
>
the surgery and we have delt with him alone since. I do not have
copies of those i will have to request them.
> 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
Hopefully i will be giving good news next time i write. Thanks again
for all your help.
Cc x
Una
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
cc
On Jan 29, 8:17 pm, u...@att.net (Una) wrote:
> 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.
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.
> 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%.
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!
> Surgeons do relatively little surveillance; that is why it helps to
> consult an oncologist. Oncologists are experts at surveillance.
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 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.
>
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
> Una
Una
>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.
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.
>I find it strange that the protocl seems to vary so much, it makes it
>hard to know which to go by!
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.
>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
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.
>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.
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.
>Thanks again x
You are very welcome. I am here to help.
Una
cc
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...@att.net (Una) wrote:
Una
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
cc
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