Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi! I am new to this site. I was diagnosed October 31, 2014 with surgery on nov. 11, 2014. I had removal of my tumor from my quadricep and resection with radiation. Interesting that I came across this information because I have been struggling with having scans 3X year. I CT scan of the chest is like 100 X-rays. I also have MRI of my quad w/contrast every 4 months. I just feel like all this causes cancer and I have been trying to research enough to be at peace with making a decision to atleast push out to 5 months. My oncologist said the protocol is 4 X year but they cut it back to 3 X year due to all the radiation our bodies are exposed too??

Is there any more current studies on protocol besides 2013?

Thank you for your time and help!

Kristi

Hi there, welcome to the forum.
I assume that the lungs CT are all normal?
I think that after 2 years on the more frequent scans schedule the patient is usually moved to a twice a yea, then once a year CT scans. Lung metastases grow slowly. Even with the known lung metastases we moved Ivan to a once in 5 or 6 months schedule as it is usually enough to detect the growth and to react fast enough - in his case he is only having cryoablations now and they only treat when the size is close to 10 mm.
I will later move your post to the Patients updates.

Thank you Olga. Yes, My CT scans have been clear and the MRI have no new concerns. I am one year out. So your son for the first couple years have them done every 3-4 months? I know it's important to be pro-active but I also don't have to expose my body to more cancer if not necessary.

Thank you for your prompt reply.

K

Dear Kristi,
I am so sorry for your ASPS diagnosis but am grateful that you found your way to this Web site and that you have reached out for information. I am grateful too that you have thankfully had disease stability for the past two years with no metastases to your lungs. I understand your valid concern about radiation exposure from repeated CT scans, but unfortunately chest CT scans are/have been the only adequate way to diagnose lung mets at the smallest most treatable size. X-rays are inadequate to diagnose small mets, but it is my understanding that there are advancements with MRI scans which now allow MRI to be used for chest scans which was previously thought to not be possible due to the movement of the lungs so this is something which you might want to explore and discuss with your doctors. The twice a year scan schedule which Olga has discussed with you is probably appropriate and adequate given your disease stability for the past two years, but it is important for you to have not only regular scheduled chest scans and an MRI of the resected tumor area on your thigh, but also at least twice a year abdominal and pelvic MRI's and a once a year brain MRI and full body bone scan to detect any mets in those areas at the smallest most treatable size rather than wait for them to become symptomatic. In our daughter Brittany's case, about a year and a half after she was diagnosed and had her primary tumor resected in her thigh, all but about 4 of her more than 50 mets in each lung spontaneously and inexplicably disappeared with her having not undergone any treatment except for the resection of the primary and post-op radiation to the resected tumor area. Because of this, we then moved to a six month scan schedule instead of every three months. Unfortunately, within a year her scans revealed that her lung mets had heartbreakingly begun increasing in size and number, and a tumor was seen in her liver because the bottom of the chest CT by chance and inadvertently included the top of the liver, otherwise it would not have been found at the small treatable size which we were then thankfully able to have successfully ablated with RFA. It is very important for you to know and understand that this is an unpredictable disease and even though the disease may appear stable in one area of the body, it may develop and grow in another area so regular vigilant, and thorough scanning is critically important in trying to manage the disease. I Hope that you will continue to actively participate and share on this Forum because shared anecdotal treatment information is truly one of our most powerful treatments in fighting this extremely rare and very challenging disease.
Take care Kristi and keep in touch with the Discussion Board as you are able
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of now 33 year old Brittany diagnosed fourteen and a half years ago at age 19 in July 2001 and currently on a Cediranib Clinical Trial which she has been participating in and thankfully having sustained disease stability for the past six and a half years after undergoing 23+ surgeries/ablations/radiosurgeries for innumerous and widely disseminated mets throughout her body

Kristi wrote:Hi! I am new to this site. I was diagnosed October 31, 2014 with surgery on nov. 11, 2014. I had removal of my tumor from my quadricep and resection with radiation. Interesting that I came across this information because I have been struggling with having scans 3X year. I CT scan of the chest is like 100 X-rays. I also have MRI of my quad w/contrast every 4 months. I just feel like all this causes cancer and I have been trying to research enough to be at peace with making a decision to atleast push out to 5 months. My oncologist said the protocol is 4 X year but they cut it back to 3 X year due to all the radiation our bodies are exposed too??

Is there any more current studies on protocol besides 2013?

Thank you for your time and help!

Kristi

Hello Kristi

My name is Debbie and our son Josh was diagnosed in August of 2012 with a tumor over 6cm long on his right front quad

Bonni and Olga have been a part of and have help to build this wonderful and resourceful, as well as supportive, place for patience and their families to share and find answers on and to contribute to pertaining to this rare ASPS.

My love to you as well with being diagnosed.

When Olga moves you to the personal section I have some questions on the size etc that your tumor was
Until then it's nice to meet you

Love
Debbie

Hi again Kristi

How big was your primary ?
It's sounds as though you are consulting with an oncologist who is definently on it as far as scans are of concern

Did the surgeon feel as though they got positive margins ? Or was the radiation as a result of your doctors added treatment to make sure of treating any possibile remaining ASPS ?
I agree with Olga and Bonni that once a year brain , pelvic and chest as well as a body scan should be performed.
How long do you suspect you had had the tumor ?
Thanks for sharing with us
Love
Debbie
Joshuas story

http://www.cureasps.org/forum/viewtopic.php?f=4&t=750

Yes, he got wide margins. The radiation was what I understood to be a let's BE sure nothing was lurking in the area. Of course it is resistant to che
motherapy which I find a blessing. I have no idea how long it has been there. All I know is I really noticed it and it was hard for any doctor to feel, is after a hard 1/2marathon run and I thought it was just an adhesion knot I needed to work out. He took out the size of a man's fist. The tumor itself was the size of a lime not the limes that are on steroids. lol Margins were clear so he got it all. I do know after I hit second year clear by God's grace he will spread them out. I started a charity that God put on my heart after the Liddy Shriver shut their doors. I was just going to fundraise and send to their organization since they gave 96% to research. If you want to read a little about my story and see the website I had done for sarcoma research I would love for you take a look and share with others to educate and awareness to sarcoma.

Thank you for answering my questions,

My best,
Krist
www.cancercharity4life.com

Kristi

I've scanned through your website and find it very upbeat and inspirational
What a great service you are doing for the local community and the larger sarcoma community.

Keep up the great work !
On a side note my dads family was raised in Moutain Home Arkansas. Beautiful part of the country.
We would "go to town" during the family's reunion .
It always cracked me up when the folks from Fayetteville would refer to the stores up north. The big catalog stores Then came Walmart. SAMs store up north and every where

Love
Debbie

Ps .What is the concensus from the Little Rock cancer community on the lactate discussion and ASPS ?