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Undifferentiated Embryonal Sarcoma Liver

LindaDawn
Posts: 25
Joined: Feb 2009

I was diagnosed with Undifferentiated Embryonal Sarcoma of the Liver after a liver operation in November. They thought they were removing a very large cyst. I have since had an additional liver surgery and am slated to begin Chemo soon. Since this cancer is so rare in adults they have decided to use a Ewings protocol for me. I am looking for any information on what to expect. Are there other adults out there that have this cancer or something close?

rhenry3
Posts: 8
Joined: Jul 2009

How are you doing? I know this sounds weird but I was actually glad to find at least one person alive that has been diagnosed with EUS. My son, Ethan, was dx on Feb 6, 2009. He was six years old at the time and after completing 6 rounds of chemo, received a liver transplant on May 29, 2009. What chemotherapy treatment are you being treated with? What is your plan for treatement? Is your tumor resectable?

LindaDawn
Posts: 25
Joined: Feb 2009

I was treated with the regime for Ewings Sarcoma. I have finished treatment three weeks ago. My tumor was resected. I lost two thirds of my liver. My liver is doing fine, as am I. My doctors said that the regime I had was designed for children and they often tolerate chemotherapy better than adults. Please feel free to ask any questions. I feel blessed to be done and would like to help any way I can.

Kay7
Posts: 1
Joined: Aug 2009

I would also like to know how you are doing? I was also diagnosed with this rare form of cancer. I am recovering from surgery and am currently facing chemo.

LindaDawn
Posts: 25
Joined: Feb 2009

I was treated with chemo for 6 months. It was a very aggressive regime. I was admitted to the hospital for two days and then three weeks later for six, that was repeated for 8 cycles. It is chemo designed for Ewings sarcoma. I think the most exciting thing is that I am done. My cat scans so far have been clear and I don't see a dr. again for three months. Please feel free to ask any questions you might have. Did you have the sarcoma on your liver?

rhenry3
Posts: 8
Joined: Jul 2009

My son just finished all chemotherapy and will meet with his oncologist here in Pittsburgh one last time before returning to Oklahoma later this week. His latest CT Scans show no evidence of disease but we will have scans every 3 months for the next 1-3 years. He still has to return to Pittsburgh next summer to have his abdominal muscle closed as they had to remove 40% of the muscle as the tumor had invaded the muscle after his open biopsy compromised the capsule that originally contained the tumor inside the liver. I am still concerned about recurrence as well as post effects of the chemotherapy and anti-rejection medications but for now he seems to be doing great. www.caringbridge.org/visit/ethanhenry3

sloane614
Posts: 5
Joined: Sep 2010

I have to breathe deeply in reading there are others out there who have had this diagnosis and are doing well. My daughter (age 9) was diagnosed with this three weeks ago, had a large tumor removed from her liver (totally gone) and is beginning her treatment protocol. She too is receiving the treatment for Ewings sarcoma, 3 day-5 day chemo rotation every three weeks. They are planning to treat her for 9 months and are tossing around a second look surgery later on to make certain that her liver is still ok. She is doing well, recovered from surgery and has been showing little effect from her first round of chemo. I am optimistic, but it is hard to constantly hear "rare tumor" and "sarcomas are aggressive" . We have a great team and are heading to Philly for a consult on Wed. Please pray for my daughter and let me hear more stories of hope!

LindaDawn
Posts: 25
Joined: Feb 2009

Sloane 614

I hope all is going well with your daughter. I am almost two years from diagnosis with no reoccurance. So far so good. This sarcoma is much more common in children and children handle chemo better than adults. So that is on the plus side for your daughter. Rare does not mean worse. I had to wrap my mind around that. Youe are in my prayers

sloane614
Posts: 5
Joined: Sep 2010

Thanks for your reply. Things continue to go well and I have all the hope in the world that Olivia will remain disease free. I am so glad to hear that you are 2-yrs disease free as well!! I will pray for your continued health and wellness! You are right, rare does not mean worse...the dr at CHOP basically said the same thing. He said there are survivors, you simply dont hear about this cancer so you dont hear the good. Rare is not worse, I too am trying to wrap my head around that. God Bless!

VAMomof3's picture
VAMomof3
Posts: 2
Joined: Dec 2010

My daughter was just diagnosed with this cancer. She had the entire right side of her liver removed. Surgery went well and she'll be starting Chemo next week. The hardest thing so far has been getting more information on this cancer. It is scary and have so many questions on what to expect. I still have not met with the social worker at CHOP and have not yet met another family going through this. Any words of advise would help tremendously.

thank you..

LindaDawn
Posts: 25
Joined: Feb 2009

This is a rare cancer and even rarer in adults. I had 2/3rds of my liver removed and intensive chemo for 6 months. Children handle chemo better and they said if I were young my treatment would have been 9 months to a year. My body could only handle six months. They used the chemo protocol that is ysed for Ewings sarcoma. Here's the good news...I am fine. No reoccurance so far and it has been a year and a half since I finished treatment. Rare does not mean worse. It just meant for me that they would use the big guns because they were not sure what would happen. Please feel free to ask questions. What type of chemo is your daughter getting? I am sending up a prayer for you and her right now.

sloane614
Posts: 5
Joined: Sep 2010

Not sure where you are located, but we consulted with CHOP (philadelphia) for our 9yr old daughter when she was diagnosed with embryonal sarcoma of the liver in September 2010. To date she has taken 10 out of 14 total treatments on the Ewings sarcoma protocol, and did not need radiation since her tumor was resected. Olivia is doing really well - the treatments are progressively harder for her little body to handle but that really only started happening half way through therapy. These kids are amazing fighters !! The doctors are thinking she will be finished with chemo by the beginning of April. If you want to chat, please feel free to contact me. I know how hard this is, and how scary it is to watch your child fight a fight that NO ONE should ever have to endure.
Saying prayers for your family,
Sloane
www.caringbridge.org/visit/oliviaradcliffe

rhenry3
Posts: 8
Joined: Jul 2009

Haven't posted on here in awhile. Just wanted to drop in as I saw that there were a couple of recent dx. Ethan is now 1yr 9mos post transplant and 1 yr 4 mos post chemo and doing very well. I am a little anxious just because this past week marked the 2 year anniversary of his dx and we have scans on the 14th but overall everything is going very well. He just earned his orange belt in Tae Kwon Do and will be competing on the 26th in his first tournament in both sparring and board breaking. He is an amazing kid and he is proof that there is LIFE beyond cancer. He will forever be a transplant patient and will always be on anti-rejection meds; however, this has not stopped him at all. There is still some residual effects from the chemo (neuropathy in his hands and feet, lowered stamina and some muscle issues) but all things considered he is a complete miracle. There is another 14 year old girl from Oklahoma who has spent the last 2 years fighting this cancer and she is finally home from Cincinatti Children's and doing fabulous. Carson Hand just crossed the 5 year mark of being cancer-free and Jason Mlot is well on his way. This cancer is very aggressive but there is HOPE! www.caringbridge.org/visit/ethanhenry3

Ali2011
Posts: 1
Joined: Sep 2011

My son was diagnosed with Embryonal Sarcoma of the liver Nov/2010 in Halifax, Canada at the IWK children's hospital. He was given a 20% chance for survival past one year.
The cancer was on his liver, abdominal wall and on his left lung. After 2 rounds of a combo of Ifosfamide and Doxirubicin, the cancer had shrunk by 40%. He had 2 more rounds and then scans. The cancer had been reduced significantly enough to schedule surgery. He had another round of the chemo combo and then a 9 hr surgery. The surgeon was able to remove all the cancer!! (And 1/2 of my son's liver). My son had another round (6th) of the chemo combo and then another surgery (a 2 hr thorocotomy) to remove the spot on his lower left lung (which the biopsy reported only scar tissue by this time). My son had one last round of chemo at the beginning of May. He had to continue taking an antibiotic until August to prevent lung infection. It is Sept now and he is back in school, we have signed up at the gym together to run and he is feeling and looking amazing. He returns to the IWK for scans in 2 weeks and will continue getting scans every 3 months for the next 2 years.
We are so thankful everyday!

MattCallahan16
Posts: 1
Joined: Apr 2011

Hi. I was diagnosed with Undifferentiated Sarcoma of the Liver eleven years ago, when I was eight. I just want to say to anyone who has a family member going through this or is going through it themselves that it is possible to get through it. After removing half of my liver and a year of chemo. I'm nineteen now and in college, and I'm as healthy as a horse. I don't know if anyone is actually going to read this, but if it helps one person, than it's worth all the stuff I went through. I hope you all have great, long lives.

sloane614
Posts: 5
Joined: Sep 2010

Matt,
So glad to see another survivor doing well, living life and enjoying thier health. My daughter just finished seven months of chemo for this disease and already she is feeling better and GROWING EYEBROWS :) She had just turned 9 when she was diagnosed. It is my prayer for you to continue with college, have much success, and maintain excellent health. ALL of the kids who have been afflicted with this cancer seem to be just extrordinary individuals; destined for greatness...you included!
Thanks for sharing and God Bless,
Sloane Radcliffe

Jwegge
Posts: 2
Joined: Apr 2011

Dear Sloane,
Thank you for reaching out to us. Megan was diagnosed with UES of the liver as well and 50 % of her liver was removed on April 19th. Her tumor was resected however it had ruptured. Her Dr,s here at Children's will be using Ifosfimide, Mesna and Doxorubicin during a 3 day cycle 6 times over a 6 month period. Yesterday her primary Oncologist mentioned a second surgery and also radiation to the site of the tumor. Does this sound like Olivia's treatment? I am very scared and worry that there is more or better out there. I need to know that I am doing the best for her.
Congratulations for the wonderful news you recently received. I pray for that day for us.
I will add Olivia to my prayers for a disease free and wonderful full life!
Jodi Wegge
Jwegge@hotmail.com

noxidrw
Posts: 1
Joined: Apr 2011

A sweet child from my community was recently diagnosed with Embrynol Sarcoma I do not know if that is similar or the same as what you had, but the family is looking for someone who has experienced something similar possibly for hope or guidance. I do not know if you would be willing to contact them at their Caring Bridge site or not, I would appreciate it and I think they would too. I thank God for your success and freedom from cancer.

http://www.caringbridge.org/visit/MeganWegge/journal

Bill

Jwegge
Posts: 2
Joined: Apr 2011

Thank you for posting, and yes your story has lifted my spirits as my 11 year old daughter was just diagnosed with UES She had 50% of her liver removed on April 19th where her very large tumor was resected in full except the bad news was that the tumor had ruptured. Megan will begin a 6 round chemotherapy treatment starting next week.
I am so glad for your recovery and that you are disease free! Best wishes to you always and I will add you to our prayers so that you will always remain disease free!

Lily619
Posts: 1
Joined: Jun 2011

My niece was diagnosed with this disease at the age of 19 and after surgery and treatment went into remission for about a year but died before she turned 21. My family has been affected by many different types of cancer, from breast cancer to colon cancer to palate cancer and then this type. This one is by far, in my opinion, the most agressive and damaging. I hope everyone here has better luck with this type of cancer. Best wishes.

LindaDawn
Posts: 25
Joined: Feb 2009

Lilly,I am so sorry for the loss of your niece.
I am an unusual target for this cancer as I am older. (50 years) I have had two liver surgeries and heavey duty Chemotherapy. That finished up two years ago and i am still here typing away. They do not discuss my condition as in remission, they discuss it as a cure. So far, so good. I have no evidence of the cancer. This cancer is so rare for an adult that all treatments are a bit of a shot in the dark, but I am currently healthy, working two jobs and growing my hair long.
All of you who are dealing with this cancer, myself included, must stay positive and optimistic.

sloane614
Posts: 5
Joined: Sep 2010

Just wanted to put out there that Olivia has finished her treatments, and had two clean scans. She is doing well and is cancer free, praise the Lord! Olivia's body has bounced back well, and she now has lots of hair, gained 35 pounds, and grew 3.5 inches since finishing chemo in April 2011. Aside from reduced stamina, which will come in time, she is a happy, healthy, 5th grader. I plan to post for a long, long time that she is a cancer survivor!
Sloane

jenlat21
Posts: 1
Joined: Dec 2011

My son Chase was 6 years old in Dec 2006 when he was diagnosed with embryonal sarcoma of the liver. He received his treatment at Children's Hospital Minneapolis and his tumor ressection at Mayo. It has been almost 4 years since he has been in remission and is doing amazing!!! He even played junior high football this past fall (something I never imagined he would be able to do)! We are soooo grateful for the great treatment and amazing doctors he has had in the past 5 years. On January 2 2012 we will celebrate 4 years and be looking forward to Jan 2013 when we can officially say he is a CANCER SURVIVOR!!

akiko
Posts: 1
Joined: Feb 2012

Hi Linda,

I believe I have the same one with you had. So glad to know one person cured from this.

I have a question. Did you go through surgery and chemotherapy only? After that, did doctor check your condition by CT scan?

LindaDawn
Posts: 25
Joined: Feb 2009

I had my initial surgery, a liver bisection, before I was diagnosed. I then had to have a second surgery to procure clean margins. I lost 2/3rds of my liver and a volleyball sized tumor. I then had six months of intesive chemo and i have regular ct scans to keep an eye out. So far so good. How are you doing? Feel free to ask whatever you would like. There are few of us out there so we need to help where we can.

LindaDawn
Posts: 25
Joined: Feb 2009

I had my initial surgery, a liver bisection, before I was diagnosed. I then had to have a second surgery to procure clean margins. I lost 2/3rds of my liver and a volleyball sized tumor. I then had six months of intesive chemo and i have regular ct scans to keep an eye out. So far so good. How are you doing? Feel free to ask whatever you would like. There are few of us out there so we need to help where we can.

djredlion
Posts: 1
Joined: May 2012

Linda,
It sounds as if you have the type of cancer with which my mother has been diagnosed. She's in ICU right now and we are prayerfukllky waiting for her to het out of the critical unit alive. I hope that she is one of the few who survives. I've read your posts, along with others, and they give me hope. Untik a few minutes ago, I was going through it. Sorry to ramble. Any information or insight that you or anyone else has is welcome.

LindaDawn
Posts: 25
Joined: Feb 2009

I am sorry it has taken me so long to reply. I have been distracted by some wonderfull life events. My daughters graduation, my son's marriage. I hope your mother is progressing well. Please know that there is hope. I am proof of that. My prayers for you and your family are flying up as I type.

atlantis0857
Posts: 1
Joined: May 2013

Thank you for posting - you give us hope! Best wishes for a long and happy life!

VAMomof3's picture
VAMomof3
Posts: 2
Joined: Dec 2010

Hi Matt, I wanted to say thank you for sharing your story and posting on this site.  My daughter is now 2 years off treatments and is getting ready to go to High School.  She is doing great and Scans still show no signs of any tumors ALL CLEAR!  She like others with UESL had her right side of the liver removed with a 12cm tumor.  6 Months of aggressive in-patient Chemo.  She still has some days she feels a little blue of what she has had to see and experiense at such a young age.  Sometimes she feels guilty for being so healthy, specially when she finds out about another angel taken by Cancer.  I never thought I'd look forward to the teenage years, but she is full of energy.  The journey has made her a great person and life lessons she still teaches me!  I as a mother will always dread the waiting of each scan result and the fears of her cancer returning, that hopeless feeling of not being able to "fix it".  I see you are on your way to college..and this is such a great milestone!  Congratulations, you inspire many!!  I look forward to the day I post in here to celebrate the next milestone in my daughters life. 

THANK YOU!!Laughing

Lorine73's picture
Lorine73
Posts: 1
Joined: Mar 2013

I had  the same exact thing...rarely found in adult with chemo treatment to follow after removal of cyst like object.

embryonal sarcoma

LindaDawn
Posts: 25
Joined: Feb 2009

Lorine73,

 

I am four years out of treatment. How are you doing?  Is this recent for you? I will check back soon.

SarahJ86
Posts: 5
Joined: Aug 2013

I was recently diagnosed with undifferentiated embryonal sarcoma of the liver at 27 after a resection of 82% of my liver and removal of my gallbladder. Fortunately, my tumor was fully encapsulated with clear margins and my liver has grown back. Unfortunately, my oncologist wants to put my on four months of chemotherapy starting next month after my incision is fully healed. It's been a hard six weeks, especially since my first diagnosis was gallstones.

I was wondering if anyone wanted to comment on their tolerance of ifosfamide or doxorubicin. I am particularly concerned about the neurological side effects and cardiotoxicity concerns. I cannot decide if I really want to put myself through it or not, given that my doctor seems to be leaning only slightly towards doing it, given my clear margins and lack of evidence of metastases. Any advice or information anyone could provide would be very helpful.

LindaDawn
Posts: 25
Joined: Feb 2009

I too was misdiagnosed at first, eventually had two liver surgeries and opted for chemo.  I had five different chemo drugs and six months of treatments.  I handled it well-ish.  Fatigue and nausea were my two biggest side effects. Also, because of my low whites (neutropenic I think they call it) I would sometimes be hospitalized to rid myself of an infection. The Docs eventually(after six months) said that is enough.  I am five years out of treatment and do not regret my choice.  They don't know if it really made a difference or not.  I have some long term effects of this aggressive chemo treatment.  I lost height, suffered chemo brain, and loss of some hearing due to antibiotics.   I also have not fully regained my physical activity.  Due to my two surgeries and long convelescence.  My heart is fine, my brain seems to be back on-line and i am thrilled to be attending life events I wasn't sure I would be physically present for.  All that said, the drs. admit they just don't know this cancer well enough.   

My prayers are with you as you make this decision.  Let us know how you progress.

bethy17048's picture
bethy17048
Posts: 2
Joined: Jul 2012

Do you know the exact protocol you were on?

 

LindaDawn
Posts: 25
Joined: Feb 2009

I was on the ewings sarcoma treatment.   It is amazing that I can't remember all the names.  You could have your Dr. call beth Isreal Deaconess in Boston.  The sarcoma dept. they should be able to tell you.  Dr. Severese (sp?) was the one who proposed my treatment.  I know I had doxirubin, isofimide, and three others.  I will check and post if I can.

bethy17048's picture
bethy17048
Posts: 2
Joined: Jul 2012

However i have already done some of the combinations, and my oncologist doesn't want to due them again , my last chemo regimn was taxotere,and gemzar which has shrunk my tumors so they work on this type of cancer and does not make you very sick..

However since my last treatment was in nov. 28,2012 My tumors were "stable". In july I decided with the help of my dr. to go the the national institute of health (NIH) and start doing new trial with the national cancer insitute (nci). As of this point the first trial did not wotk my tumors started to grow again so I am in the process of going back to start another trial.

My hope is to find something that will cure this cancer. I am a 3 time survivor of this embryonal cell sarcoma and currently still fighting for the 4th.. As aways say cancer isn't beating me I WILL beat it. Being finging since nov.1998...

 

 

LindaDawn
Posts: 25
Joined: Feb 2009

I am celebrating another birthday.  the future looks bright.

SarahJ86
Posts: 5
Joined: Aug 2013

Happy Birthday! And thank you for your dedication to responding to posts on the board. I take a great deal of comfort in hearing your story.

NoriO
Posts: 1
Joined: Nov 2013

Happy Birthday, Linda!

 

I was also diagnosed with UES 4 months ago.

As you know there are not much information for this Sarcoma, but your posts has been giving me hope.

Thank you sooo much!  

LindaDawn
Posts: 25
Joined: Feb 2009

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
Posts: 3
Joined: Dec 2013

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
Posts: 25
Joined: Feb 2009

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
Posts: 3
Joined: Dec 2013

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
Posts: 5
Joined: Aug 2013

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.

Kelly Paloma
Posts: 3
Joined: Dec 2013

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

LindaDawn
Posts: 25
Joined: Feb 2009

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

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