KJ from Utah - Dx Aug 2013 at 6 years old

[LParsons]

We have just gotten news on our little KJ's scan schedule. I would really appreciate input and advice as to the direction the oncologist is going with this next scan.
They have scheduled the next scan for November. It will be a CT with contrast and focusing on her chest / lung area. So I think this is the direction Olga and Ivan mentioned. Please let me know if there are any questions you feel we should be asking as we prepare for this next scan.
The oncologist told my daughter that as with most sarcomas, the lungs are important to watch and they intend to do that with this scan.
Also, he said they are concerned there is a balance between scan exposure and monitoring KJ closely.
Please let me know if you have any questions about what was said, and if in your opinion we are on the right track with this next scan.

Thanks in advance.
Lorryn

[Olga]

Lorryn, yes, it is the right scan to have next, based on the result it can be repeated in 6 month. In general our patients also get the following scans for the initial staging:
a brain MRI, abdominal CT and a bone scan - these are repeated once a year if there are no known distant mets to watch for them.

[D.ap]

Lorryn
I believe you mentioned that you've had a PET scan with the first set of scans ?
Do you know what kind of report that gave you all ?
Debbie

[D.ap]

On another note ,I find it helpful to keep a note book of sorts to write down when we have scans performed Then we have something to remind us all when the next scan needs to be done.

[LParsons]

Olga,
I am happy to hear the CT on the chest is a good move.
When you say a Brain MRI and Abdominal CT and a bone scan. Are these three separate scans that she should have done right away?
For instance can the abdomen CT be done at the same time they are doing upcoming CT?
Should they press to have a brain MRI and a bone scan done soon? Or do they try to space these out for exposure concerns?
My daughter is going to ask for copies of all of the reports from her MRI, CT and PET/CT and ask the oncologist about these additional three scans. As well as seeing how much was checked in the process of the scans already done.

Debbie,
The PET/CT was clear. My daughter records her meetings with the oncologist so that she doesn't forget any details. As I listen to that conversation, they were specific that we have a clear scan with not sign of mets. Now I don't know what that covers! I was under the impression that the PET / CT was the best scan to find mets.
I ordered the organizer from Cancer 101. So her mama has been tracking these things and keeping it all together. I read one persons account of having been treated in Utah as a child, and having a recurrence as an adult in another state and it was expensive to access her old records. So based on that information, I am trying to make sure we get copies of everything so we will always have her records readily available.

KJ celebrated her 7th birthday on September 25th. It happened to be grandparents day at her school. I cannot tell you how blessed I feel to have such a strong little person in my life. She has healed from her both surgeries as though they never happened. She is aware we have to watch for these "bumps" as she calls them. A child is so innocent, I am grateful she isn't burdened with fear. Some days I feel on top of the world, days like today I feel very small and lost in the confusion of how to best protect her.

Thanks all,
Lorryn

[Olga]

1. About what scans she had already. The PET/CT is a low sensitivity scan in ASPS setting. ASPS is a relatively slow growing sarcoma and PET scan uses glucose based tracer that flows to the areas with the high glucose metabolism - the mets from the faster growing cancers would attract lots of tracer and they would lit on the scan, but not ASPS. Even known Ivan mets sized a little more than 10 mm would not lit there. So in general I would suspect that anything smaller than 10 mm is likely to be missed by the PET/CT in ASPS. If the tumor is bigger than 20 mm it would probably be found.
The other scans she had were to scan the primary area, not the other body parts.
2. About the staging scans. These are the scans that are usually done as a baseline after the patient was just Dx, to check the body for the possible dissemination and to have the baseline scans to be able to compare in the future. These are all different scans. MRI is not radiation based scan and is not dangerous. CT scan is. CT scan chest and abdomen could probably be done at once but it increases the amount of the radiation she gets at once so I would have it done separately with the good time lag in between like two weeks. Tell your daughter to ask the oncologist about the staging scans specifically so she would understand the general idea behind all the scanning.

[LParsons]

Thank you Olga for such a clear list.
I have forwarded your responses to my daughter and she is sending your responses in an email to Dr. Maese. She will call him Monday and clarify and insist on staging scans as noted.
My daughter is depending on me to help her gather information. I forward everything to her. This us so much to have this information.
Thanks again. I will let you know when her schedule is established and how the meeting with the oncologist goes.

Lorryn

[D.ap]

Lorryn

How was your week?
I found Olga's information extremely helpful. Thank you Olga
I was curious how big your grand daughters tumor was at removal ?
I apologize if I over looked the information
Our grand daughter turned 5 September 17th
Hope this day finds you joy

Ps the home page of this forum has a wealth of information in case you hadn't found it

Debbie

[LParsons]

Debbie,
The tumor was small, less than 2cm. According to her oncologist, "by size it was a grade 1 lesion. But due to the fact it is ASPS this is what makes it a high grade lesion". I heard this on the recording my daughter made of at the consultation.
Monday they will be speaking to the oncologist again with the specific questions about the staging scans.
I have found a lot of helpful information on the main page. Still feeling pretty overwhelmed.
Thanks for your kindness.
Lorryn

[D.ap]

Lorryn and family

Thanks for the information. I realize how painful it is to revisit the details but it helps us all get a better informed picture so we can possible give some better direction to combat this insidious disease together

You girls stay strong for the appointment..I remember ours like it was yesterday. On the other hand it seems like a million years ago. The good news is we are all visualizing and planning and researching so we can have Josh and all involved in this ASPS fight with us for along, long time !

Love
Debbie

[D.ap]

PS Tell the doctor that scans rule the fight!

[Olga]

Just to add to the list of the questions for the oncologist - ask if the Whole-Body MRI might be available for the pediatric patients, it is a newer imaging unit that allows to MRI whole body avoiding the radiation exposure. There are lots of technical problems with it but it seems that there are some advances coming so it might became available or is available at some ped. hospitals.

[D.ap]

Lorryn and Family

Please remember we are all here for everyone involved. The moment may feel so overwhelming ,however ,be assured that there is a light at the end of the tunnel
With sincere well wishes

Debbie, Josh and families

[babbittgirl]

Welcome to the forum....a little late as I have not checked in in some time. I am Brinley's from Montana's mom! Brinley is now 3 and so far we have had all clear scans since the removal of her abdominal tumor in June 2012. If you ever want to speak with us please feel free to contact/ message us! I know how hard it is to try to find any young patients to compare stories or seek information from. When Brinley was diagnosed we were told that they believed her to be the youngest ever diagnosed, making my hours of scouring the internet for a simular story ever so frustrating. But so far -so good! We wish you the very best. Our next scans are in April and we hope for great results!! All the best to you and your precious granddaughter!

Crystal

[Vega343]

Wow, a story I connect with as our 9 year old is recently diagnosed and loves a pedi to keep her in good spirits. Please keep us posted!