Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Can’t thank you enough for your support. You are in deed a great human being. Stay blessed n keep supporting people like me. U are absolutely right I need to work upon your suggestions.

And Olga, would you please explain what do you
Mean by saying ,’ (although there are few known cases when they appeared without at the much later time like 10 years after)’??
Thanks

Thanks for your response. As you might remember that my primary tumour was in my left chest wall so yes they did re-scan the primary section site after the operation and it was all clear. They achieved negative margins. Plus didn’t have to remove whole of my major pectoral as previously planned, ins...

**update** hey everyone As you know that I had a major surgery back in February to remove my primary tumour from the chest, so repeated CT Chest was done and the results came back yesterday. The good news is that there is no evidence of pulmonary metastasis.🤞🏻 But I am still dealing with the same is...

Hi Olga

Could you please send me your email address please thanks 🙏🏻

Thanks 🙏🏻 but my SS Wants to do radiation therapy for first. Then surgery to obtain clear margins

I am depressed 😌

Hi Olga, Thanks for the info. Just recapping that in my case my primary tumour was removed from my upper left chest without doing the biopsy by the plastic surgeon without knowing that it’s ASPS. Because they know it was partially resected and that it should have done with more wide margins they dec...

Update ; I had my first meeting with my sarcoma specialist today and he suggested me; 1. I should have MRI (brain) this week 2. Going to see radiational oncologist next week to discuss the radiation therapy ( have been recommended for 6 weeks , 5 days a week week ) 3. Then after a break for 2 months...

Hi Debbie

Thanks for the information. I’ll insist my SS to follow this schedule but at this stage I haven’t been asked to have MRI of brain even. It was initially scheduled and then cancelled. I have to enquire this too.
I’ll update the forum on Monday as well after the SS meeting.

Regards
Sona

Well for the very first time since I have been diagnosed I am going to see my sarcoma specialist on Monday morning to discuss the treatment plan.

Is there any specific questions I should be asking you reckon ?

Thanks

Dear Debbie

Thanks for sharing the link

I ll ask them about pathology report as well, which they haven’t given me yet.

And I ll post it here for sure.

Regards
Sona

Oh thanks Olga I think this is a question which I might be able to ask my sarcoma specialist only. Unfortunately I haven’t got to see him even once. Would you mind telling me the kind of “genes” that should be present in the immunohistochemical analysis? In my next meeting ( which is in near future)...

Hi Olga
this is how it look like the report

Hi I have got no clue whether it was embolized or not? Any my surgeon told me that when he saw the ultrasound pictures the shadows were approximately 26*26*17 mm and he including all other experts thought it was just a neural tumour but when he started the actual surgery he resected 40*23*17 mm this...

Hi everyone, My name is Sona and m from Melbourne. I am 31 yo, living with my wife And 10 months old baby girl. On 30th July 2019, I went to my family doctor for something else, and as soon as doctor any thing else? I suddenly said yeah I have got this lump on my chest ( left upper) for last 2-3 mon...