Retroperitoneal Sarcoma. My Dad Has It. Pls Help. I Don't Know Where To Start.

Hi,

I don't know what to do to help my dad. I think he has retroperitoneal sarcoma, intra-abdominal sarcoma. I don't know where to start or if that's even exactly what he has. That's what a family friend's son (who's a surgical resident) said to look up/google.

I saw a sample scan of his abdomen area, he has a very large mass growing in there. According to his CT scan report, it's 17CM X 12 X15 IN DIAMETER. It's huge. His organs on the right side of his abdomen are displaced. You can't even see them in some of the CT scans, they are blocked by the growth.

I have no idea what to do, he just told us (my sister and brother and I) a few days ago that he had something growing inside. NONE of us knew it was this big. So I've been trying to read a little online tonight, but I don't know if it's because I'm tired, it's not making much sense to me.

I don't know what other tests he should do. He has the CT scan, Doesn't want to do a biopsy because he's afraid of the mass rupturing. What does he need to do? Can someone please help me? I am shaking right now.

 I'm trying to help my parents as much as I can with research and what not because their English is not the greatest. They immigrated here long ago, but still it takes awhile to read stuff like this. Thanks for any advice/direction you can give me. I really really appreciate it.

 

 

I sent you a response on the private board, but since I am new to this site, I am not sure if you received that response. My husband has RS and is being treated in Miami at the Sylvester Cancer Center. There are few doctors who are familiar with this disease, so you have to research it. Where are you located? It is possible to removed the tumor unless it is involved with a vital organ. Five years ago, my husband had a large sarcoma removed. It came back last year, but is inoperable because it has grown around his renal artery and he only has one kidney. His surgery was last Feb. and he has done very well. He has been treated with a chemo (pill form) that is sometimes helpful in keeping down the size of the tumor, or even shrinking it. This addresses a "quality of life" issue. I hope you can find a cancer center where there is a sarcoma specialist. If i can give you any help, let me know. Good luck.

Go find an opinion from a surgical oncologist at an NCI designated Comprehensive Cancer Center.  That would be my general advice.  Google "NCI Cancer Center" and you will find the closest one to you.  There will be surgical oncologists at virtually all of these.  

In some cases, if they do additional tests, it may be beyond surgery. In that case a medical oncologist or, in some cases, a radiation oncologist, who specializes in sarcomas would be helpful.  Sarcomas are rare, so the main thing is to find a center that specializes in it.  Most of the time, you will find the best resources at an NCI Cancer Center.

Regards and best wishes,

Dr V

www.gyncancerdoctor.com  

Thank you, we are located near UCLA so that is where my dad has gone to have it removed. Not by a surgical oncologist though, they had to remove one of his kidneys with the tumor, which was about the size of a football. I'll be looking at those NCI cancer centers and hopefully he'll be in a condition to go visit them soon. THANK YOU!!

Hi Jal701,

Thank you for responding. I don't remember if I replied already or not, but thank you for telling me about your husband. I hope he beats the RS again! The fact that he did five years ago and is still going strong now is amazing. It gives me hope.  

My father had surgery last Friday, and they took out his kidney as well. He was moving so fast to get the tumor out that I couldn't keep up with him in researching this and what not. We are located near UCLA so I hope to see what sort of treatments they can help him with. Thank you so much.  

 

I presume you got my private message. I am hoping for a speedy recovery for your Dad. Keep us posted. They aren't probably going to do anything for several weeks, but here's to an uncomplicated recovery.

Great to hear that.  UCLA is actually one of those centers.  The Jonsson Comprehensive Cancer Center is NCI accredited.  You should be in good shape as far as being in the right place. 

 www.gyncancerdoctor.com

Dr S 

 

On 1/17/2008 laivly wrote:

Hi,

I don't know what to do to help my dad. I think he has retroperitoneal sarcoma, intra-abdominal sarcoma. I don't know where to start or if that's even exactly what he has. That's what a family friend's son (who's a surgical resident) said to look up/google.

I saw a sample scan of his abdomen area, he has a very large mass growing in there. According to his CT scan report, it's 17CM X 12 X15 IN DIAMETER. It's huge. His organs on the right side of his abdomen are displaced. You can't even see them in some of the CT scans, they are blocked by the growth.

I have no idea what to do, he just told us (my sister and brother and I) a few days ago that he had something growing inside. NONE of us knew it was this big. So I've been trying to read a little online tonight, but I don't know if it's because I'm tired, it's not making much sense to me.

I don't know what other tests he should do. He has the CT scan, Doesn't want to do a biopsy because he's afraid of the mass rupturing. What does he need to do? Can someone please help me? I am shaking right now.

 I'm trying to help my parents as much as I can with research and what not because their English is not the greatest. They immigrated here long ago, but still it takes awhile to read stuff like this. Thanks for any advice/direction you can give me. I really really appreciate it.

 

 

In 1971 I was diagnosed with a fibrosarcoma, which is soft tissue sarcoma.  I also had a very large mass in my abdomen estimated to be the size of a deflated football.  It was inoperable and I went to M.D. Anderson Cancer Center in Houston, TX.  They gave me chemotherapy and I was blessed with a full recovery from that cancer.  It never reocurred. I have a very unusual genetic disorder called Gardner Syndrome (FAP).  In 2005 I had rectal cancer and now have an ileostomy.  You can look up MDACC on the Internet (mdanderson.com)  Good luck and let me know if you have any questions.  Gerry