what happens when a sacrococcygeal teratoma grows back
cc
and thankfully it was benign. he is 16wks now and after just having
his 1st ultra sound we have been told he needs an mri next wk as they
could see something on the scan. we are hoping it is just scar
tissue, but i have been told very little about what happens if it
reacurres and so was hoping someone might have some information. i
know it can still be malignant even when it wasnt last time, and want
to know the chances of this. also want to knowif its returned once is
it likely to keep happening.
please any info or stories would help.
Una
I know I speak for everyone when I say we are sorry you need us, but this
group is here for you. Even if most of us just lurk. Please understand
that however painful this is for you, it was painful for each of us and we
may not always be able to cope with our memories.
Do you know there is an international protocol for surveillance of infant
teratomas? Your baby should have periodic MRIs and the first one is needed
primarily as a baseline for future MRIs. Your baby also needs periodic
blood tests for alpha fetoprotein (AFP). My baby had MRIs every 6 months
for a few years, and AFP tests every 3 months or more frequently. At one
time, every month.
Most if not all babies will have suspicious looking scar tissue (sometimes
called "post operative changes") on ultrasound and MRI. The repeated MRIs
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. We did that, but then no one was able
to tell us if the AFP value was good or bad, and I finally started doing
my homework. I got a copy of the pathology report for the teratoma and
learned its grade was ambiguous, and possibly not benign. I also got my
baby's first medical records and they included other AFP values. Plotting
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 secondary
type of tumor that grows from a teratoma: endodermal sinus tumor (EST).
The AFP test is to look for EST. So we got a pediatric oncologist with
relevant experience with germ cell tumors, and access to repeated MRIs per
the international protocol, and we watched the baby carefully. Obtaining
the protocol surveillance took months to arrange, as not all ped oncs have
experience with these tumors and not all hospitals will do non-emergency
MRIs on tiny babies. The first post-operative MRI showed changes. The
later MRIs showed no new changes, which was good. Eventually her AFP did
normalize, which was better still.
The best studies of teratomas in babies are by a German group, and many of
their papers are in German. I read German. Using 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. Now at age 3 years, her risk is under 1%. Whew!
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. Radiation and surgery are options; surgery
is preferred unless the site is inaccessible. Teratomas fortunately have
very low malignant potential, so the risk of the teratoma spreading to
other organs is very low. However, a teratoma can develop other kinds of
tumor, and of these the most common is EST. EST 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. Sometimes it is done
the other way: surgery first, then chemotherapy.
The bottom line for you is that probably your baby is just fine but if not
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. Even if there were
"nothing" on the US, an MRI is still called for.
Discovered in time, the outcome usually is excellent. What 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. Do
not let your baby be one of them.
You should be consulting a pediatric oncologist. Do you have one lined up?
If any of the above has raised new questions for you, please don't be shy.
Ask questions!
Hugs,
Una
cc
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?
Una
>We are currently with a ped consultant at bristol childrens hospital
That's Bristol, England?
>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
Your consultant is a surgeon then. Unlikely to be an oncologist as
well. Most oncologists are physicians, not surgeons. A surgeon is
someone who went to medical school, then trained in a surgical
specialty. A physician is someone who went to medical school, then
trained in a medical specialty. Physicians diagnose illness and
prescribe medicines, treatments, and surgeries (or rather, referral
to a surgeon). Surgeons perform surgeries. Some may diagnose but
many do not, that role largely having been taken on by radiologists.
We take our little one to our pediatric surgeon for rectal exams;
the surgeon has an exquisitely sensitive finger plus deeper training
in human anatomy than a physician plus the most experience in feeling
tumors. Our pediatric oncologist and our pediatrician will do a
rectal exam if asked but both are frank that because they do so few
rectal exams they really wouldn't know what to make of it.
Our oncologist interprets the pathology and blood lab reports.
>as far as i know that was the only option open to us!
For newborns with SCTs, surgery comes first, promptly. So far, so
good; you are on track. Now surveillance begins. Most SCT babies
need nothing more than surveillance, and many are not seen by an
oncologist. But, I would want the surveillance to be supervised by
someone who knows all about germ cell tumors! Your consultant may
be such a person, but perhaps not. These tumors are rare enough
that most surgeons have at most only a passing familiarity. Many
have never handled one. While our baby was in hospital before the
operation, every staff surgeon came around to have a feel and gain
experience.
MRIs are much more expensive than US, and much less available. Our
local children's hospital wanted to go with US alone, but the US was
not informative. Our consulting children's hospital has fabulous
US equipment but does not use it for postoperative surveillance of
teratomas; they simply do MRIs. Our baby got an MRI every 6 months
up to age 2. For a time, our team wanted to repeat the MRI at a 3
month interval if the AFP values continued to raise concern, but
fortunately the AFP values improved, so that wasn't necessary. The
2 year MRI and AFP values were so good that we reduced surveillance
to an annual MRI and rectal exam, and AFP every 6 months. This to
change at a moment's notice if any concern emerges. After the next
MRI (soon) if all still looks good, we may end the MRIs and just do
yearly AFP and rectal exam.
Have they told you what to expect with the MRI? They will start an
intravenous line and sedate the baby. The sedation may be a drug
in the IV line, or general anesthesia. General anesthesia involves
passing a tube down the throat into the lungs, and can be pretty
rough on a small baby. During the MRI they are likely to want to
inject a contrast agent via the IV line. This is one way in which
MRI totally surpasses ultrasound. Most tumors will take up contrast
agent very quickly so by scanning, then adding the agent, then
scanning again with the baby in exactly the same position on the
bed, a tumor can be made to literally jump out of the MRI images.
The baby will be on no food for hours before the scheduled time of
the scan, so it is very important to feed the baby right up to the
cutoff time. Adequate calories and fluids is very important. If
the baby is dehydrated when they go to insert the IV line, getting
it in may be very difficult.
Not knowing your baby's AFP values, I would be a little worried by
the monthly (very short) interval of AFPs and rectal exams. Is the
consultant worried and not being frank with you, or just keen to
test so often? I would be interested to see your baby's AFP values.
If you send them, I will send you a chart of your baby's AFPs vs
the "normal" curve from the medical literature. I find the chart
much more useful than tables. All I need is age and AFP value. If
you prefer, you can send birth date and test dates and values, but
please send to me privately.
Best wishes,
Una
Una
>We are currently with a ped consultant at bristol childrens hospital
That's Bristol, England?
>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
Your consultant is a surgeon then. Unlikely to be an oncologist as
well. Most oncologists are physicians, not surgeons. A surgeon is
someone who went to medical school, then trained in a surgical
specialty. A physician is someone who went to medical school, then
trained in a medical specialty. Physicians diagnose illness and
prescribe medicines, treatments, and surgeries (or rather, referral
to a surgeon). Surgeons perform surgeries. Some may diagnose but
many do not, that role largely having been taken on by radiologists.
We take our little one to our pediatric surgeon for rectal exams;
the surgeon has an exquisitely sensitive finger plus deeper training
in human anatomy than a physician plus the most experience in feeling
tumors. Our pediatric oncologist and our pediatrician will do a
rectal exam if asked but both are frank that because they do so few
rectal exams they really wouldn't know what to make of it.
Our oncologist interprets the pathology and blood lab reports.
>as far as i know that was the only option open to us!
For newborns with SCTs, surgery comes first, promptly. So far, so
good; you are on track. Now surveillance begins. Most SCT babies
need nothing more than surveillance. A recent UK study reported
that of 351 babies and children diagnosed initially with mature or
immature teratoma, 5 year event free survival was 92.2% and 85.9%,
respectively, and 5-year overall survival was 99% and 95.1%. An
event was a tumor recurrence, requiring surgery or chemotherapy.
Do you have a copy of the pathology report and surgical report for
your baby's SCT? Those reports allow your baby to be compared to
the study groups, to estimate your baby's initial risk.
cc
i have been trying to reserch on internet all day but nothing is as
helpfull as what you have told me. yes bristol england, and yes he is
a sugeon. i was surprised that he would be the one to do the long term
fallow up, maybe he is trained in other areas aswell - i will ask. i
do not have a copy of the pathology report and do not know all the afp
levels so will request copies from the hospital, and will be very
greatful if you could make a graph for me when i have recieved them.
how should i send them privately? firstly though we have the mri this
friday and i will let u know how that goes, all being well (fingers
crossed) i will be looking in to making sure we have regular MRI's
even if we have to do it privately. Thank you so much for all the
help and i am glad to hear your little girl is doing so well it sounds
like she has a very good mum looking after her.
Una
>Thanks you seem to know so much how did you find all the information?
I am just 3 years ahead of you, on the same road you are traveling now.
I remember being at the place where you are now, and I figure you need
to know now what I needed to know then.
Some of the best sources are cancer.gov and PubMed[1]. PubMed mostly
has abstracts of articles, not complete articles, but a good library
can get you photocopies of the complete articles. I also read medical
and surgical textbooks; my library borrows them for me from other
libraries. I always ask the professionals about sources, and some of
them give me photocopies of their sources.
Cancer.gov no longer says there is a standard protocol for surveillance
of teratomas; it used to say that but I had a very hard time finding
out the source. The source turned out to be a Pediatric Oncology Group
(POG) internal document. Because the document is not intended for use
outside POG, they decided to remove reference to it from that website.
It took me months of asking, but finally I got a copy of it. It gave a
schedule very similar to the German standard followup schedules.[2] Which
of those schedules to follow depends on your baby's specific details;
for my baby, "Nachsorgeplan Teratome Grad 0-3 ohne Microfoci" was the
appropriate schedule.
[1] http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed
[2] http://www.kinderkrebsinfo.de/e1676/e1738/e1756/index_ger.html
Many SCT babies are followed by their surgeons, and that is just fine,
for most of them. After surgery, followup by a surgeon is important.
For some, other expertise is needed and the trick is in the transition.
You're doing a great job getting on top of this.
In our case, we were followed by a local pediatric surgeon (and we were
content with that arrangement) until the AFP tests raised a red flag.
Then that surgeon told us to consult an oncologist. The oncologist (a
hematologist by training who mostly saw children with leukemia) told us
to consult an oncologist with experience in germ cell tumors. We did
that, and the new oncologist said many of her patients have a similar
story.
I have learned to request copies of all test results and reports before
the appointment. Some health care providers don't like that but I prefer
those who do like it. I like to work out my questions in advance of the
appointment, so I can ask them and get answers. I write them down, so I
don't forget. I also get copies of the US and MRI scans on computer disk,
and view them at home. For some people this is not helpful but if you
were able to follow your prenatal scans then you may be able to make out
what your baby's team is concerned about now.
Re how to contact me privately, how are you reading this? On a website,
or by e-mail, or by netnews?
Another thing about the MRI. It is likely to take about 45 minutes in
the scanner, but you should plan to spend all day at the hospital. There
is check in, some paperwork specific to the MRI, then they get the IV
started and sedate the baby, then they scan, take a quick look at the
scan, decide if they want to scan some more. Then comes recovery, which
can take hours before the baby reaches a point where they will let you
go home. Our MRI facility is emphatic that the baby cannot go on public
transit after the scan, so we have to use a private vehicle or a taxi
and usually we get stuck in rush hour traffic unless we hang out at the
hospital a couple hours longer.
Best wishes,
Una
cc
tissue! i got the afp levels so can send them to u i am reading this
on the internet discussion site but also recive ur reply via email.
thank you for all ur help
Una
>so we had the mri not a nice day but thankfully it was just scar
>tissue!
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.
>i got the afp levels so can send them to u i am reading this
>on the internet discussion site but also recive ur reply via email.
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
Una
>i got the afp levels so can send them to u
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