Cure Alveolar Soft Part Sarcoma International (iCureASPS)

First i have to apologize, my english is not perfect

I was diagnosed with asps about a month ago. I had a sarcoma removed from my thigh, but it hadnt spread enywhere else.

Im from Finland, so this is really rare type of cancer in here, only one or two diagnoses are made in a year. My doctor told my that he can't tell me anything about this cancer becoase there no information. So of course i started looking information in the internet, and i was freaked out. I had no idea that this cancer is this bad kind. Now i feel just completely lost and afraid that it will spread.

Hello Finn
I know it is frightening but you are not alone now Please read here an ask questions and if you wanrt to please ask your docrtor to come read here or if he wants my sarcoma doctors phone number i am sure he will talk to him
Finn, you are not alone and it is a slow growing cancer. Please join the forums and start a post in this area http://www.cureasps.org/forum/viewforum.php?f=4
You are doing very well with your english also Go post where the tumor was and how you are now and how you are feeling an your worries

Finn wrote:First i have to apologize, my english is not perfect

I was diagnosed with asps about a month ago. I had a sarcoma removed from my thigh, but it hadnt spread enywhere else.

Im from Finland, so this is really rare type of cancer in here, only one or two diagnoses are made in a year. My doctor told my that he can't tell me anything about this cancer becoase there no information. So of course i started looking information in the internet, and i was freaked out. I had no idea that this cancer is this bad kind. Now i feel just completely lost and afraid that it will spread.

Finn, hi, this diagnosis is hard to get but apparently there are some people that have localized ASPS and it does not metastasize anywhere else in their body so I would stay hopeful for the best but vigilant - chest CT scans once in a few months (3-4) and the brain MRI once a year and a bone scan once a year would be the right schedule so you would not miss if anything appears and try to deal with it when it is small. Good luck.

Thank you so much for your kind and quick reply! Its so nice to now that im not alone with this and that it is possible that this will not spread. I need to start studying englis cancer vocabulary so that i could understand what people here are talking about, and for me to post more about my tumor.

Yes, please, open a new tread in a Personal Stories and Updates forum for your story and tell us a little more about the location of the primary, how it was found etc. and then you can update the status as you wish to keep us posted.

Finn, welcome to the forums!

ASPS is definitely not the worst cancer you can get because it's quite slow-growing. Today, so many more treatment options are available than just 5-10-20 years ago. It's a whole different story now. I've had it since 2003, and I'm enjoying my life very much even though I've had a lot of surgeries in the meantime. Hope for the best, prepare for the worst - that's how I play this game.

Tell us a little bit about yourself - age, how you found the primary tumor, etc.

Hello everybody!

I just wanted to check in and tell that my lungs and everything are clean clean clean fromm cancer, so it hasn´t spread anywhere ! Hopefully it will continue to be that way

Great! So glad to hear that!

Thank you very much for updating your case. It gives a hope and perspective to the people that are just diagnosed and are looking for the information like you were a year ago, the information sharing is a big thing when dealing with such a rare disease like ASPS.

Dear Finn,
Thank you for sharing this wonderful and encouraging news and the Hope that it brings to all of us in the ASPS Community. It would be very helpful to everyone fighting this challenging disease, and deeply appreciated, if you could share further information as to whether or not you have undergone any type of surgical or systemic treatment for your disease since your diagnosis about a year and a half ago , how often you are having scans, and what types of scans and areas of the body are being scanned ( chest/abdominal/pelvic CT, full bodt bone scan, brain MRI)?
My most positive thoughts and very best wishes are with you for continued stable disease, and I will be anxiously awaiting your next update which will Hopefully bring continued good news. In the meantime, please take care Finn and keep in touch as you are able.
Sharing the joy of your good scan results with great happiness, special caring thoughts, and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed in July 2001

Hello! Yes so the reason why im posting my good news is to give people hope

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So when i was diagnosed with asps in my right leg above knee the cancer or the lump or what to call it (sorry this isnt my native language) was very tight package, kind of like a egg with the shell. So it hadnt spread enywhere.

So the treatment was surgery to cut the whole thing off, the lump I mean. And thats been the only treatment that ive been given.

So they are tracking me for 10 years.
First two years the follow-ups are a bit frequent. I have MRI two times a year. And THX the lung photo thing every two months so thats six times a year.
Then after two years I have MRI only once a year and THX three or four times.

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So thats the plan, and I hope to maintain this healthy and I wish everyone whos been diagnosed to get healthy and happy and everything good ! <3

That's great to hear. So rarely do we see a patient here whose disease was done after primary excision

Thanks for sharing this post because it brings hope for all the others. Best wishes for your future scans!