Kat's daughter from Australia - Dx Jul 2013 at 7 yrs old

[Olga]

Statistically they are correct - the lung is the first place of the ASPS metastases in most cases, but there are very rare cases when there are other areas mets are found before or even without ever finding lung mets, like single cases but they do exist. If anything, you now get the clean base line scans for her records. A MRI is an expensive scan. CT scan is not expensive but the concern is to subject her to an additional radiation exposure, MRI is always better if possible.

[Bonni Hess]

Hello again Damian, I know that Annika's oncologists are resistant to scanning other areas of her body since she thankfully does not currently have any (scan visible) lung mets which USUALLY preceed the development/appearance of mets in other areas, but I also know, as Olga has said, that ASPS mets CAN and DO sometimes, albeit rarely, appear in other areas of the body without first being found in the lungs. My 14 and a half years of ASPS experience has proven to me that ASPS is an unpredictable disease and nothing can be just naiively assumed nor nonchalantly taken for granted based on the USUAL nature of this extremely rare and poorly understood disease. I understand that the oncologists may be justifiably concerned about dangerous radiation exposure from CT scans to dear Annika's precious young body, but safer and more accurate abdominal and pelvic MRI's can be done as we have requested and obtained for Brittany to prevent the damage and risks posed by CT scan radiation exposure. Mets need to be found at the smallest most treatable size and before they become symptomatic for the most successful treatment outcome, and vigilant, adequate, and appropriate scanning is the only way to ensure early diagnosis of mets. I have personally observed too many incidents of naiive/ nonchalant/ irresponsible oncologist scanning recommendations in our ASPS patient community which have had tragic results of the eventual diagnosis of mets which have unfortunately grown too large to be safely resected or successfully treated. With this insidious disease, it is always best to be as pro-active as possible and to err on the side of caution. I Hope that Annika enjoys the remainder of her summer vacation, and that she has a very happy, positive, and healthy start to her new school year. With ongoing special caring thoughts, healing wishes for dear Annika, and continued Hope, Bonni

[Kat]

Thanks Olga,
Yes the rare cases are what concerns me..... ASPS is so rare that I don't even think statistics are of much use, the numbers are just too small, all we can say is that "most" cases get lungs mets first....
I don't like the extra radiation, but I may request the abdo CT to check for liver mets etc. I did read of a case where the lung CT caught a liver met on the edge of the scan, thy did have existing lung mets in that case....

Cheers

Damian

[Kat]

Thanks Bonni,
exactly my thoughts re the scans. I might start a dialogue with our onc about scans and mets and slowly and gently nudge him towards being concerned about hidden abdo mets....
The only scan Annika's had of her abdomen was the original PET scan, which I regard as mostly useless as it didn't show her primary! Mets may be different I know, but I expected something!

He was initially very dismissive of a head MRI but I persisted with info on brain mets and he finally did it.

Cheers

Damian

[Olga]

It may be not needed, the separate abdominal CT to check on the liver, they can just increase the lung CT a bit ti include more of a liver and the radiation dose would be less than two of the separate ones combined. Talk to the radiology. And yes, the chest CT is showing the part of the liver in it.

[Bonni Hess]

Hi Damian, It may have been Brittany's case that you read about in which her regularly scheduled chest CT showed a liver met because the chest CT inadvertently included just the top portion of her liver and an observant radiologist spotted and reported the liver met that he saw on the scan. Prior to the finding of the liver met, Brittany was only receiving chest CT scans every six months due to the relative stability of her lung mets. However, since the shocking discovery of the liver met and the harsh realization that this unpredictable disease can develop in other areas of the body even if it appears stable in the lungs, abdominal/pelvic scans have been included in Brittany's regularly scheduled chest CT scan schedule. I personally disagree with Olga that a separate scan is unnecessary since although it may be true that the chest CT could be extended to include the liver, it still would not show other abdominal and pelvic areas which should be followed due to the possibility of ASPS metastasizing to these areas. As I have said, I understand and share the concern about radiation exposure from CT scans which is why I suggested that you request abdominal and pelvic MRI's instead of CT scans. Since Annika thankfully does not currently have any lung mets, the abdominal/ pelvic scan monitoring may only be necessary once a year, but I think that she should at least have a baseline scan done now. It is always better to be safe than sorry that adequate scans were not done. With more special caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni

[Kat]

Thanks Olga and Bonni,
I was hoping they could extend the chest CT down through the abdomen, I'd love a MRI instead, but I think the chance of getting that is remote. I do know a radiographer, I might talk to her about radiation dose from the larger scan, I'd like a baseline scan. I'm sure that you're right about it being Brittany's case.
Thankfully our oncologist is really good, some we have seen are much too blasé about ASPS scanning. Others seem to regard it as untreatable, so why bother scanning! Scary.

Damian

[Bonni Hess]

Dear Damian, You are unfortunately right about (too) many oncologists taking a nonchalant approach to scheduling appropriate and adequate scans for ASPS patients because they consider ASPS to be an untreatable disease and therefore provide only palliative care instead of proactive treatment inexcusably and dangerously postponing/refusing to schedule scans until the patient develops symptoms. I am grateful that Annika's oncologist is more responsive to your concerns and requests, and Hope that she will support your request for a baseline abdominal/pelvic MRI instead of a CT in order to prevent CT scan radiation exposure to those areas. We just wish that we would have known/been told by the oncologists LONG ago that abdominal/pelvic MRI's are a viable scan alternative to abdominal/pelvic CT scans so that we could have requested/insisted on abdominal/pelvic MRI's instead of the CT scans to prevent Brittany from having FAR TOO MANY!! years of concerning CT scan radiation exposure and possible damage to her abdominal and pelvic organs. It was not until I learned through my research that MRI can be successfully used to detect abdominal/pelvic mets that we approached the oncologist to request MRI scans instead of CT's, and our request was thankfully immediately granted. Had we not been pro-active with our concerns about this issue, Brittany would probably still be receiving abdominal/pelvic CT scans instead of MRI's because none of her oncogists ever discussed or offered MRI's as an alternative scan choice until we personally
requested it. Take care Damian and keep the Board updated on the outcome of your scan requests.With special thoughts, healing wishes, caring friendship, and continued Hope, Bonni

[Kat]

Dear Bonni,
Yes it was surprising how the options are not all explained, we have found time and again that we research something, and query the team, and they say, sure, we can do that or will look into it. I'm amazed that all options re scanning and treatment aren't on the table when you visit your oncologist!

I think they're not used to a cancer with no standard treatment. It may be why some are keen to treat it like just another sarcoma, suggesting standard cytotoxic chemo and radiation, which we know wont help.

Damian

[Kat]

G'Day everyone, happy Australia Day!
Just a quick question, does anybody know if ASPS is upregulating PARP? There has been quite a few articles about PARP inhibitors lately.
I fact, do we have a breakdown of what ASPS commonly expresses?

This was interesting:
http://www.nature.com/ncomms/2015/15081 ... s8882.html

Damian

[D.ap]

Damian

Happy Ausi day!

Found an article
Specific to asps in the lung

http://www.diagnosticpathology.org/cont ... 0399-5.pdf

[D.ap]

Also
Martin and I have reported our pathology reports here
I'd like to see what other people have discovered to understand better of the composites of ASPS in different parts of the primary and or metastic locations.

http://www.cureasps.org/forum/viewtopic ... 1052#p8025

[D.ap]

Damian
I'm not to pretend that I know what you are searching for as I am not an expert to say the least.
However I am a mom with hopes of a cure . Yesterday as a matter of a fact for all the friends and family(ies) involved.
Some days it feels like inquireis and research are going s l o w l y , huh?
Here's my hail Mary

http://www.cureasps.org/forum/viewtopic.php?f=2&t=1193

[Kat]

Hi Debbie,
Thanks for that, I'll have a look in a sec.

I'm fairly convinced that cytotoxic chemicals are not the way with ASPS, at least our ones currently.

So I"m after anything that sets ASPS apart from normal cells, so that the difference can be targeted to destroy ASPS cells without massive collateral damage. Also, knowing everything about ASPS cells may allow us to "piggyback" from research in other areas that also express those features.

The metabolic stuff really interests me, more research is pointing out differences in cancer cell mitochondria and cytoplasmic metabolism.

I'll take anything that may let us damage ASPS cells!

Damian

[Kat]

Hi all,
Annika's MRI and CT are clear! We've just been to Sydney Children's Hospital Randwick, all good,the Onc is very happy with her and says she's growing in perfect proportion, she's grown 70mm since Christmas! She's also 11! Where did that go? He wants to see us in January for the usual scans.

Damian