Cure Alveolar Soft Part Sarcoma International (iCureASPS)

ASPS may exist in the patient’s body for a long time before being diagnosed. It can grow large and push aside surrounding tissues long before causing discomfort. Therefore ASPS symptoms may either be a painless swelling or soreness caused by compressed nerves or muscles affecting the range of motion in the affected area.
Please tell us here about early signs that you experienced prior to being diagnosed with ASPS.

this is Amanda Yet again on her moms username....

Was wondering if anyone else with ASPS felt really tired all the time, or legarthy... i remember that playing a big role in my life, and was just wondering if it was just teenage hood before i was diagnosed....

I also was really tired and slept a lot before I was diagnosed. And after too...

i still tend to be tired lots, but i know that has alot to do with having 2 young ones under the age of 3 running around... it worries me sometimes when i get that legarthic tired feeling, but for now i am positive its just motherhood lol.... i can say tho i slept sooo much before the diagnosis! weird, i wonder if everyone was like this

I understand...I also have 2 under 3...they keep you busy don't they? I also noticed that while I was pregnant the cancer seemed affected by my hormones...and I had to use progesterone to keep my pregnancies.

See while i was pregnant i think it was the best i ever felt lol, of course in the later months i had the usual heat burn and back pain.... Actually i have to say my firsdt prtegnancy went alot better than my second, With Michael i was radiant and glowing, Hunter i was tired alot more.... Was just wondering if fatigue was a side effect for this cancer, i see its not mentioned... But I would come home from school and sleep sleep sleep, i was always exhausted....I guess it effects everyone differently.... I definately have fear of ASPS coming back with a vengence... I have 2 tumors very very small, i would like to know now what they are if they are even canerous tumors... I guess there is no way to find out but wait... it kinda sucks, it feels like a time bomb.... Now having children my biggerst fear is to be sick or worse die knowing i wont be able to raise them... I just hate sitting and waiting, everyt ime i go for scans my anxiety level is definately risin....

Hello
I was very sleepy on and off for about a year and in the area in my right calf that the 6cm mass was there was pain and my foot seemed to not move well when i tried to move it up and down. Other then all of this i felt better then i have in years.

Amanda

I felt absolutely nothing. In fact, I felt awesome. Not sure why you would feel anything, unless it's already very advanced.

Hello Ivan,
How large was your tumor? Mine was in my right calf and it did hurt it was 5.76 cm. This is how we found it and many others also sadly only find it when it hurts. So how did you find your tumor if it didnt hurt :/ I work in film so the sleepy times may have been because of that who knows. I am just glad they found it when they did! But, i also felt great

Ivan wrote:I felt absolutely nothing. In fact, I felt awesome. Not sure why you would feel anything, unless it's already very advanced.

Amanda wrote:Hello Ivan,
How large was your tumor? Mine was in my right calf and it did hurt it was 5.76 cm. This is how we found it and many others also sadly only find it when it hurts. So how did you find your tumor if it didnt hurt :/ I work in film so the sleepy times may have been because of that who knows. I am just glad they found it when they did! But, i also felt great

Ivan wrote:I felt absolutely nothing. In fact, I felt awesome. Not sure why you would feel anything, unless it's already very advanced.

Well, it was a few cm by a few cm. In the arm, so it was easily visible. Anything of that size in the thigh would not be visible, of course.

Hello all

This is Debbie, Josh's mom. Josh was tired and also experienced some night sweats. My family had low thyroid but he always tested negative. Along another line of things I noticed was when he was in his late teens early twenties he would react to bug bites..most any bug bites with an mild allergic reaction. He would develope a puss reaction with each bite no matter how it was disenfected.

Did any of you all have that problem?

Sincerely
Debbie

Hi All

In my case I had no symptoms until I had felt pain in my lower back. Might have been cause by extremely long bike rides that I started doing uphill in the period.

First i though it was connected with that but unfortunately not. Size was 3x3cm at the time and remained the same in the following 4 months until I had it removed

no other symptoms as I continued actively to ride a bike, run etc.

About 5 months before finding the tumor my leg felt knotted up and tired after exercise. In January 2008 while beginning workout my leg was cramping hard during workouts and I was very tired. The fatigue had been going on for a while, but I kept pushing through it to get healthy. The cramping was the worst. I ate lots of bananas and drank tons of water but it felt as though there was an impossible amount of lactic acid that I couldn't clear out. Finally, after one large cramping episode the tumor presented itself.

Hi Teresa

My name is Debbie and our son is Josh.
Short cut-
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750

Did you experience night sweat at all?
Did you have any sores that didn't heal and anything like shingles?
Lastly, had you had any injury to the area involved that you know of in your life time?

My main regret about radiation is that I have keloid scarring so the radiation deeply scarred my leg. It was hard to walk normal for a long time. That being said, I have always been grateful it hadn't spread. The cancer led me to get my degree. I graduated April 2014.

IE Keloid scaring

http://www.cureasps.org/forum/viewtopic ... 1147#p8656

7 years is wonderful to hear, with out spread. I am sorry to hear of the keloid and I hope you've made adjustments with the scarring as well.

Thanks in advance and certainly thank you for contributing

Love
Debbie