Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

I’ve just received a phone call from the oncologist advising that there is nothing to worry about but the brain mri scan is showing a “fleck” on one of the slides. It isn’t showing on the many others of the same place. The team (radiologists and oncologists) have carefully reviewed and discussed and are not concerned as the fleck is showing on only one and not others of the same place.

They are calling it an artefact which can be caused by the computer or a vessel. Either way none of them felt the need to scan again except one neurosurgeon. They are going to rescan in September but wondered if this is something you have heard of?

The oncologist stressed we shouldn’t worry but obviously we are.

[Olga]

What is the size of this object?

[Disco76lover]

In the oncologists words she wouldn’t give a size as the whole team of oncologists and radiologists are sure it’s an artifact and assured me not to worry. She was a little annoyed as one person said to do a scan hence causing unnecessary worry. I am trying to take comfort from the fact the “artifact” wasn’t on other shots of the same area in different angles but we will have to see. They are going to scan next month.

However, I will worry until it is confirmed by another mri. 😭

[D.ap]

Hi Melanie ,
One month I feel will not be too long to wait.
However the team needs to be forthwith in the size of the imagined abnormality.
And I personally feel that it needs to be followed after that soon , not on a yearly scan sched, as Ellie is entering an upsurge of hormonal influx . It’s not been etched in stone that ASPS is hormonally connected , however some hormone activities are immune suppressive and I feel that those circumstances lend themselves to progression for our loved ones.
Hang in there as I’m sorry this is understandably stressful for you .💞
Love ,

[Ivan]

In the oncologists words she wouldn’t give a size as the whole team of oncologists and radiologists are sure it’s an artifact and assured me not to worry. She was a little annoyed as one person said to do a scan hence causing unnecessary worry. I am trying to take comfort from the fact the “artifact” wasn’t on other shots of the same area in different angles but we will have to see. They are going to scan next month.

However, I will worry until it is confirmed by another mri. 😭

Yearly brain MRI is not frequent enough, while lung CT every 4 months is too frequent. I'd change the schedule on that.

[Disco76lover]

Thanks both. I’ll discuss with the team 👌

[Ivan]

Thanks both. I’ll discuss with the team 👌

Lung mets tend to grow slower than brain mets, and are just less immediately dangerous. A 1 cm brain MRI could cause an aneurysm. A 1 cm lung met is not immediately dangerous and easily treatable via cryoablation.

I would say at most 6 months between brain MRI's and at least 6 months between chest CT's unless the disease is very active or some treatment is being undertaken.

[Disco76lover]

Thanks Ivan.

Treatment seems to have come on a bit in the 5 years since Ellie was diagnosed but do you think there is ever going to be an end to this cancer? 🙄😢🙏

[Disco76lover]

Good news!! The suspected abstract on the yearly brain mri was just that. An abstract!! Phew. 🙏😊

[D.ap]

Great news, Melanie !!
Thanks for the update .💞

[Disco76lover]

My daughter has just had her 4 monthly lung ct scan and things look stable. So much so, the oncologist is moving her scans from 4 monthly to 6 monthly. This is due to prolonged stability / reduction. Less radiation will be good too!

History:
*Primary in calf muscle, removed Sept 2016 approx 3cm with clear margins.
*Brain / bones clear
*Lung mets discovered Dec 2016
*Cediranib started May 2017
*Ongoing stable disease with shrinkage in some mets. Largest met under 1cm
*yearly brain mri

[Olga]

It looks reasonable. Always ask to compare not only to the previous scan but with the larger interval to notice the growth easier.

[Disco76lover]

Ellie has just had ct scan of her lungs. I am pleased to report all stable with no growth, no reductions and no new mets. These scans have moved to 6 monthly so the next one is in October.

Ellie has also put on weight which is great.

She had some breathing difficulties a couple of months ago which went as quick as it came. A hospital check with xray showed everything was normal and I do wonder if it was related to the Covid vaccine which she had a week or two before the difficulties. The oncologist did mention it could be but there is no concern and we will never know. She said it could be her immune system responding to the vaccine. The ct scan has definitely put any concerns out of our heads and the cediranib is doing what it should! 😀🙏❤️

History:
*Primary in calf muscle, removed Sept 2016 approx 3cm with clear margins.
*Brain / bones clear
*Lung mets discovered Dec 2016 in both lungs.
*Cediranib started May 2017 which is taken daily.
*Ongoing stable disease with shrinkage in some mets. Largest met under 1cm
*yearly brain mri
*6 monthly lung ct scans

[D.ap]

Hi Melanie
How exciting to hear of the success of cediranib!
Ellie and the family must be ecstatic with the success.
Thank you for letting us know how Ellie is doing .
Sending celebratory hugs your way !

Love ,

[Disco76lover]

Thanks Debbie ❤️