Undifferentiated Embryonal Sarcoma Liver

LindaDawn

Let's shout!

i feel we need to make some noise.  When I was diagnosed I was told this was soooo rare among adults.  27 cases ever.  But since I have started this thread, there seem to be more then imagined.  Drs. need to comunicate and know.  Please tell your drs.  that it is not as rare as it presents in medical journals.  I am going strong and want you to also.

Kelly Paloma

Hello

Hi everyone.  I am very glad to read all of your posts.  I am 33 years old, currently recovering from my 2nd liver resection in 5 years, and was told on Christmas Eve that I have UES.  My doctor is giving me a month to heal from surgery before starting aggressive chemotherapy.  I am very anxious about the treatment and prognosis, but grateful that it is myself going through this and not one of my children.  Since all of my liver troubles began, I've never had a diagnosis that's "stuck" for very long.  The doctors just haven't seen anything like it, but after looking at the cyst they recently removed, the pathologist is fairly certain that its UES, despite being so rare in adults.  I am encouraged to hear your stories and would welcome any advice you can give.  God bless you all.

LindaDawn

Chin up- that's an order

I know how scary it can be to get this diagnosis.  I too, had two liver resections and very aggressive chemo.  I am well and looking forward. (5 years) I will send up prayers for you that the Drs have the diagnosis and treatment right for you.  One thing that helped me was to bring myself to the treatment, engaging nurses and orderlies in a relationship, bringing things from home with me (I had week long chemo infusions so I was in the hospital alot) dressing in regular clothes each day, and riding the exercise bike they had in the common room.  One day at a time it is true, but try not to waste a precious day worrying.  May this truly be a happy new year for you.

Kelly Paloma

LindaDawn said:

Chin up- that's an order

I know how scary it can be to get this diagnosis.  I too, had two liver resections and very aggressive chemo.  I am well and looking forward. (5 years) I will send up prayers for you that the Drs have the diagnosis and treatment right for you.  One thing that helped me was to bring myself to the treatment, engaging nurses and orderlies in a relationship, bringing things from home with me (I had week long chemo infusions so I was in the hospital alot) dressing in regular clothes each day, and riding the exercise bike they had in the common room.  One day at a time it is true, but try not to waste a precious day worrying.  May this truly be a happy new year for you.

Thank you!

Linda Dawn,

 

Thank you so much for your advice, encouragement, and prayers!  I met with the oncologist today, and it seems I need to learn a little patience!  He wants to take some time to consult with other specialists and do some research, as well as let me fully heal from the resection.  He's not sure if I should have chemo, or possibly, move forward with a transplant.  Talking of a transplant has always scared me most of all, but I am trying to accept that it may not be avoidable.  It will be another month before I meet with the doctor again.  I was frustrated at first to not come away with a concrete plan, but I will try to take this time to recover and enjoy the company of family and friends before worrying about the next step! 

SarahJ86

Kelly Paloma said:

Thank you!

Linda Dawn,

 

Thank you so much for your advice, encouragement, and prayers!  I met with the oncologist today, and it seems I need to learn a little patience!  He wants to take some time to consult with other specialists and do some research, as well as let me fully heal from the resection.  He's not sure if I should have chemo, or possibly, move forward with a transplant.  Talking of a transplant has always scared me most of all, but I am trying to accept that it may not be avoidable.  It will be another month before I meet with the doctor again.  I was frustrated at first to not come away with a concrete plan, but I will try to take this time to recover and enjoy the company of family and friends before worrying about the next step! 

Don't be afraid to get a

Don't be afraid to get a second opinion, even if you have to go to another hospital. I say this because you sound uncomfortable. I've been really comfortable with my doctors, my diagnosis, and my treatment. I think it's important that you be confident and comfortable. I think it helps you heal faster and be stronger. So, if you have doubts, try somewhere else. The best doctor in the world isn't very good if you don't feel safe. That's not to say that I think your doctor is wrong or that you won't come back to them for treatment, just to say "don't feel boxed in; you deserve treatment that's right for you." You might enourage your doctor to reach out to the doctors at Shands in Gainesville, FL, I can say with confidence that they've compiled a lot of info on UES in the past few months.

That being said, the chemo is hard, but you'll get through it. I'm about three months into the Ewing's Sarcoma protocol and about to start my fourth treatment. I can't say it's been a fun time, but they can do amazing things in terms of controlling the nausea and protecting your body from the side effects. My white count does get low mid-cycle, but between the Neulasta shots and my oncologist adjusting the dosages, it's only for a short time.

You'll lose your hair. I recommend shaving it or cutting it really short before it starts to really fall out. Having it come out it your hands is scary. Asking someone to cut it is your choice. I found that I felt more in control making that choice than letting the chemo choose for me.

LindaDawn

I second that

Srah that is very good advice.  You are undergoing the same protocol I went through.  Keep on keeping on:)

Kelly Paloma

SarahJ86 said:

Don't be afraid to get a

Don't be afraid to get a second opinion, even if you have to go to another hospital. I say this because you sound uncomfortable. I've been really comfortable with my doctors, my diagnosis, and my treatment. I think it's important that you be confident and comfortable. I think it helps you heal faster and be stronger. So, if you have doubts, try somewhere else. The best doctor in the world isn't very good if you don't feel safe. That's not to say that I think your doctor is wrong or that you won't come back to them for treatment, just to say "don't feel boxed in; you deserve treatment that's right for you." You might enourage your doctor to reach out to the doctors at Shands in Gainesville, FL, I can say with confidence that they've compiled a lot of info on UES in the past few months.

That being said, the chemo is hard, but you'll get through it. I'm about three months into the Ewing's Sarcoma protocol and about to start my fourth treatment. I can't say it's been a fun time, but they can do amazing things in terms of controlling the nausea and protecting your body from the side effects. My white count does get low mid-cycle, but between the Neulasta shots and my oncologist adjusting the dosages, it's only for a short time.

You'll lose your hair. I recommend shaving it or cutting it really short before it starts to really fall out. Having it come out it your hands is scary. Asking someone to cut it is your choice. I found that I felt more in control making that choice than letting the chemo choose for me.

Thank you!

Sarah,

Thank you so much for your kind words and advice.  I absolutely agree that having a second opinion will give me peace of mind.  I was able to talk to my doctor this week, who has sent my pathology samples away to 2 other institutions to get their opinions.  I also like your recommendation on cutting my hair.  It has always been rather long, but I'm going to take this opportunity to go ahead now and get a very short hair cut.  In fact, I've asked a friend to go with me to make a fun outing out of it. 

I can't tell you how much comfort I've derived from finding these posts.  As I've told family and friends this past week of my diagnosis, I've been able to say, yes, I have something scary, but I know of people going through the same thing and they are doing well!  Thank you for being willing to share!

You are in my thoughts and prayers as you continue your treatment!  Thank you and Take care!

Kelly