Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone ,
My son had asps with his abdominal wall which was removed . He has pain in his thigh since last 15 days , cant see a swelling or lump ?
Can asps recur in different location ?

Best Wishes

Hello Anita
It looks like your son was dx’d in 2011? This is what I understand from a prior post this year?


Was that when the abdominal surgery was performed ?

I’d sure ask the doctors about his leg pain .

To answer your question , yes asps can already be at another location , and if the doctor mention that the abdomen surgery of the tumor was NOT with positive margins, then it’s possible for the tumor to regrow in the abdomen . Is there any recurrence in the abdomen area ?

How big was the tumor that was removed from your sons abdomen?

Did the doctors think it was the primary area asps had started ,and have they performed other scans to see if ASPS is else where?

Have they determined it to be Alveolar Soft Part Sarcoma by a pathologist ?

Sincerely
Debbie

Hello Debbie

Yes the tumor was surgically removed with good margins in 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.

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 ?

Thanks for the revert Debbie.
Warm Regards

Hello again Anita

Thank you for the history .
It’s wonderful that your sons lungs haven’t shown increases in the lung images. Has your son been on any treatments for these last 6 years?

PET has been used by some patients but because of the low mitotic levels of ASPS, the scan is not always accurate when looking for ASPS through out the body . It starts small and grows slowly most of the time .

This is what I found on PET

“Positron emission tomography (PET) scans: PET scans usually use a form of radioactive sugar. Body cells take in different amounts of the sugar, depending on how fast they are growing. Cancer cells, which grow quickly, are more likely to take up larger amounts of the sugar than normal cells. You’ll be asked to not drink any sugary liquids for several hours before the test.”


A bone scan should be performed to develope what’s called a baseline scan . It can be used to refer back to throughout your sons life as ASPS is a life long sarcoma to follow . This can be annually performed . The bone scan , as I understand it, will obviously be more specific to bone abdomalities/ activity ie tumors . ASPS is generally in the skeletal areas to begin with then organ areas secondarily ?
Olga will clarify when able .

CT is more detailed with the lungs . However , x-rays give less radiation exposure to the patient...

Also , I would begin with your sons leg and get an MRI , if allowed , to get a detailed picture of the area he is feeling pain .

Our son Josh was dx’d in 2012 at the age of 32 years old.
His primary was in his right upper outer thigh. It felt like a pulled muscle .
Hope this helps
Love
Debbie

Anita, can you please open a new topic post for your son in http://www.cureasps.org/forum/viewforum.php?f=4 Personal stories and updates, starting with the short story re. when Dx etc - just copy/paste what you already told us here . This topic for lung metastases is not the correct one. We can discuss everything there.

Dear Anita, Please read my today's response to you in Mark's topic in the Personal Updates topic. ASPS is a metastatic disease that can, and unfortunately does, metastasize to almost any area of the body which is why it is SO critically important to pro-actively and vigilantly monitor the disease with regular and adequate scans including chest/abdominal/pelvic CT scans every 6 to 12 months, an annual brain MRI, an annual full body bone scan, and a heart echocardiogram. I strongly encourage you to have your son's leg pain evaluated and to schedule all of the scans for him as soon as possible. With shared concern, special caring thoughts, healing wishes, and continued Hope, Bonni Hess

Hello all,

This is an amazing group .

Debbie the info you shared is an eye opener. Doctors here never suggested a bone scan. And I am going to reconsider the muscle pain in my son's thigh .

Bonni read it and am so happy that your daughter is doing good with cediranib. Doctor has not given it a go for my son.

Olga I have pasted the details in the link you shared .

Thankyou so much !
With love and best wishes ,
Anita