Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone ,

My son was Dx'd in May 2011 for ASPS . The tumor was with his abdominal wall in the lower part of the rectus . It was surgically removed with good margins in May 2011. It was 4x5x3.5cm. Yes it was pathalogically tested . It had occasional mitosis and Mib labelling index <2% . Resected margins were free of tumor.
We had got PET done before the surgery and after a year . No other part had shown a presence thankfully. He has not been on any treatment since recovering from the surgery .

No recurrence by God 's grace . Previously his abdomen and lungs were being evaluated quarterly and later half yearly. Now they are evaluating his lungs only and on yearly basis.

He has multiple nodules in both his lungfields which are discrete subcentimetric nodules and have reduced in number and size in 2014's CT . And 2015 scan says that one of the nodule is the lingula of left lungfield has mildly reduced in size , other nodules are as before with no significant interval change.

Now he is being evaluated on yearly basis through an X Ray for his lungs only.

Is it the correct approach ?

With prayers to God to Bless us all,
Anita

Hi Anita,
ASPS is known for its ability to metastasize very late. The patient has to be scanned all his life to watch for the mets. The need to watch has to be balanced with the potential damage from the radiation he receives from the scanning. The best scan is MRI - it does not use this damaging radiation, but it can not be used in lungs as they are moving. The PET scan is pretty useless for ASPS as it has a low activity on PET and even bigger mets can be missed.
He needs to have the original resection site scanned by MRI once a year, the lungs by a CT scan once a year (the X-Ray is not reliable especially in a patient with the known lung nodules that could be just temporary stable or slow growing lung mets), plus it would be beneficial for him to have a base line brain and abdominal MRI if you can get it, for the initial staging as the PET scan can not be used for ASPS initial staging at all.

ASPS first site of metastasis is usually lungs, but occasionally in rare cases the first site of metastasis can be brain or locally some close place like abdomen, soft tissue or bone. For the suspicious soft tissue metastasis (some strange lump etc) the initial ultrasound could be done, it is cheap and easy to get and if it raises suspicion then other scans can be done (MRI).
Some people do not get distant metastases at all so do not be scared, just be vigilant.

Hello Olga ,

Thankyou for this valuable information . It will be of great help to me.


Gratitude,
Anita

Dear Anita, I am so sorry for your dear son Ritchie's ASPS diagnosis, but am grateful for his seeming disease stability for the past six years, and am also grateful that you found your way to this Web site and have reached out for information and advice. As I told you in my two other posts to you on other topics on this Board, I am concerned about the lack of appropriate scans that your son"s disease is being monitored with, as well as the pain that he is experiencing in his leg which could be symptomatic of a metastatic tumor and needs to be evaluated as soon as possible. Olga has provided some excellent information and advice which I agree with. Take care, be pro-active and as knowledgeable as possible, and keep in touch as you are able. With special caring thoughts, healing wishes, and continued Hope, Bonni Hess

Good morning (USA) , Anita

How old is your son now?
You mentioned that there appeared to not be a lump on your sons leg? Can you definentaly tell where the pain in coming from?
Here’s a link to MRI verses ultrasound


Imaging Capabilities and Limitations

“Both ultrasound and MRI can be useful in assessing the condition of organs and soft issues such as breasts and blood vessels. However, ultrasound waves do not transmit well through bone or gas. As a result, MRI or another modality is generally recommended when doctors need to get a look at what's happening inside or behind bony structures or air-filled organs such as the lungs or bowel.”

https://info.iowaradiology.com/mri-vs.- ... difference


I hope the following week gets you answers.

Love
Debbie

Thankyou Bonni Hess .
My son is going to be 23 this July Debbie . He was 15 y 10 months at the time of surgery .

Thankyou for the information and link.
Will keep myself informed .

With best wishes and hope for everyone.
Anita