Alveolar soft part sarcoma

Posted by darmenta1122 @darmenta1122, May 22, 2023

Hello everyone, my sister was diagnosed with Alveolar soft part sarcoma, she will be having surgery May 26. 2023. She’s only 21 years old. We are praying for her and giving her lots of support, but it’s been very hard for us to cope with this rare cancer. Has anyone else have beinf diagnosed with ASPS? We need support. Thank you. My Best wishes to everyone that is going through a rough time.

Interested in more discussions like this? Go to the Cancer Support Group.

My prayers to your sister, her surgeon, nurses, & your family. Stand firm in believing that it’s God’s will that she will come out ok. With God’s Blessings.
Pls keep us posted on how she’s doing.

[My husband w/ other complications had surgery in 2018 to remove Liposarcoma and I Thank God he made it.]

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Thank you so much, I appreciate your kind words. Yes God will take care of her. I’m so glad your husband is a survivor. I will keep you updated thank you.

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My heart goes out to you and to your sister, @darmenta1122. I read your post when it was first published and wanted to reach out, but was not sure what I could contribute. I am a therapist who has indefinitely paused my clinical work due to my own cancer, but have recently worked with a now-young adult who was diagnosed with and treated for ASPS about 7 years ago and continues to live with and adjust to this reality. I have not yet reached out to this person to let them know that I am now aware of another young person with their diagnosis, as I have to carefully consider their needs vs. my desire to be helpful to you and your sister. I could see there possibly being, at some point, great value for each in finding each other.

You and your sister remain on my mind, in my thoughts and prayers. I have been hoping you might post again, when energy allows, to let us know how the surgery went, how your sister is faring and how you are faring with holding all of this as her sibling. I would like to imagine that I might be of some support on some level, at some point, while needing to balance my former client's privacy and right to live without this aspect of their experience being brought forward without their initiating it.

I CAN say that my experience, of observation from outside of a body and self experiencing ASPS, is that there may be a very strong yearning to live life as if cancer is NOT constantly knocking at one's door, while at the same time, an experience of being outside of what peers have the luxury of experiencing, due to the risks involved with this diagnosis. I wish your sister and you well.

Sincerely,

Gynosaur

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@gynosaur42 thank you for your reply has moved us all. My family and I really appreciate your good wishes. Surgery went very well and doctor was able to remove the tumor completely from her leg and all the bad cells around it. We are so thankful for him his such a good doctor and person he has been so sweet to my little sister. She will will be having her next appointment June 12 to determine the next step in this critical journey. We been very positive and holding on to God hands. My sister has been very strong idk how she does it, she gave birth in Nov and the reason we found out about her tumor was because the day she gave birth she notice her leg being swollen in abnormal way. At that time we didn’t know what it was nor doctors couldn’t determine what was wrong until an mri/ct scans 5 months later. It’s very sad that she can’t enjoy her motherhood like she should, but we look at the positive side of the circumstances. And if it wasn’t for her little angel she would’ve ignored all the signs for this cancer and who knows what would’ve happened. It’s been hard finding support with people with same diagnosis. It would be very good for them to get to know each other and become support for each other. You will be in my prayers as well for this young person to continue to have faith and hope that one day there will be a cure.

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@darmenta1122

@gynosaur42 thank you for your reply has moved us all. My family and I really appreciate your good wishes. Surgery went very well and doctor was able to remove the tumor completely from her leg and all the bad cells around it. We are so thankful for him his such a good doctor and person he has been so sweet to my little sister. She will will be having her next appointment June 12 to determine the next step in this critical journey. We been very positive and holding on to God hands. My sister has been very strong idk how she does it, she gave birth in Nov and the reason we found out about her tumor was because the day she gave birth she notice her leg being swollen in abnormal way. At that time we didn’t know what it was nor doctors couldn’t determine what was wrong until an mri/ct scans 5 months later. It’s very sad that she can’t enjoy her motherhood like she should, but we look at the positive side of the circumstances. And if it wasn’t for her little angel she would’ve ignored all the signs for this cancer and who knows what would’ve happened. It’s been hard finding support with people with same diagnosis. It would be very good for them to get to know each other and become support for each other. You will be in my prayers as well for this young person to continue to have faith and hope that one day there will be a cure.

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I wanted to let you know that I have also added this discussion to the
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

@darmenta1122, how are YOU doing?

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Hello, My Daughter (28) has a mass removed from her back on May 5th 2023. Tests results came back positive or Alveolar Soft Tissue Sarcoma. She is scheduled for MRI and CT scan on Friday the 16th. I am trying to get her to the Mayo Clinic or MD Anderson. Can you tell me where your sister is being treated and what type of treatment they are doing? We are looking for a specialist in Sarcoma. They said she will need a second surgery to go in and make sure all the bad tissue has been removed as well as tack out good tissue around the infected area.

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@cas2800

Hello, My Daughter (28) has a mass removed from her back on May 5th 2023. Tests results came back positive or Alveolar Soft Tissue Sarcoma. She is scheduled for MRI and CT scan on Friday the 16th. I am trying to get her to the Mayo Clinic or MD Anderson. Can you tell me where your sister is being treated and what type of treatment they are doing? We are looking for a specialist in Sarcoma. They said she will need a second surgery to go in and make sure all the bad tissue has been removed as well as tack out good tissue around the infected area.

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@cas2800 I’m sorry about your daughter, I know this could be overwhelming and stressful, we are from Arizona and tried having her go to Mayo Clinic, but her insurance doesn’t cover it. And to pay out of pocket for consultation and exams it was a lot of money for us. She’s currently being treated at banner health university of Arizona. She had surgery and will be doing radiation to make sure nothing was left behind. She will be having an appointment with her oncologist Tuesday for the next process. Idk if she will be in some type of treatment since she did not have any other tumors in her lungs or pelvis or brain. I wish you all the best luck. Have straight!! This is not a curable but it’s treatable. Keep me updated. I wish I was helpful. I could send you info on her sarcoma surgical doctor if you reside in Tucson Arizona.

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