LIPOSARCOMA TREATMENT

Hi Ann, Sue & others It is very useful to read your posts and I am reaching out desperately for some guidance. My 79 year old father has just been operated for retroperitoneal liposarcoma 6 weeks ago in Delhi, India. After 15 doctors in 2 months, he was finally diagnosed. The surgery fortunately went well & he is recovering. The tumour had positive margins, they carried out debulking, & there is likley resudual disease in the abdomen. We have been advised local raditaion therapy now for 5 weeks (25 sittings). However, I have been taking several opinions on this & I find that we have very divergent views - one group are saying that local RT will delay local recurrence & others have said that there isnt concluisve evidence yet on RT in liposarcomas. For those of you who have been fortunate to consult leading centres likes Sloan Kettering & Mayo Clinic - what would your advice be? 5 weeks of radiiation is a long time & my father is very keen to turn to his home & I am nervous of going ahead with a treatment which is not strongly backed by evidence. He has also been advised Targeted Therapy - Votrient - although he doesnt seem to have metastasis (yet). What do you think? I am really distressded and anxious - please help! Barua

Hello Barua...I apologize for the delay in response as I am currently undergoing chemo. I went through RT and well I was made aware that they will see if this helps recurences. Unfortunately nearly two years later it is back and a bit more aggressive.  For the most part surgery has been the only way to b rid of them...but how many times can they truly operate...Ill be praying that whichever choice you make is successful. As always I am here for any questions...

Thanks for the prayers and well wishes for my surgery - it means the world to me coming from the Sarcoma community.  With Sarcoma you never know what curve ball(s) you are going to get.

Surgery was 4 1/2 hours (a little longer than expected).   They removed the mass on the Psoas but did not have positive margins.  Pathology report identified it as a "Desmoid Tumor" - another rare condition.  The assumption was that it was going to be high grade de-differentiated liposarcoma like my initial tumor.  Due to scar tissue the surgeon had to remove some small intenstine and colon.  While doing that he found another small liposarcoma tumor (low grade pathology) and removed it completely.

Most likely, I will be having some follow-up therapy of radiation and then possible chemo for the "Desmoid Tumor" that may also be able to help with Sarcoma.  I will need some physical therapy in helping my leg return to full function.  Working on strengthening my immune system.

Best of health,

Greg

Hi Greg,

So glad to hear you are through the surgery and no positive margins. You know now what you are dealing with and can start treatments to get through this. I'll be praying for you Greg. Keep in touch and tell us how you are doing, we care about you! 

In Christ alone, Lynn and Mike  

Hi - I am just wondering if you had any distant metastasis when the doctor agreed to do the surgery. Our surgeon does not want to do the surgery based on the fact that my father has bone mets... even though it is very minor at the moment. Who was the doctor that did your surgery? Looking for someone who will be honest with my family about the outcomes... looking forward to your response

ISLAND BOY - i hope you see this. desperate and need help..

My father was diagnosed with a large liposarcoma in his abdomen almost a year ago and has received chemo and radiation to prep him for surgery. I am wondering if you had any distant metastasis when the doctor from Cancer Treatment of America agreed to do the surgery. And who was the surgeon????

Our surgeon does not want to do the surgery based on the fact that my father has bone mets... even though it is very minor at the moment.

Looking for someone who will be honest with my family about the outcomes... looking forward to your response

Hi 

I hope you are doing well, I need your guide.

My husband (32 years old) has diagnosed with retroperitoneal liposarcoma on November 2015.  It was a 11*8 cm tumor on CT scan. No metastaz to any organ or bone at the time of diagnose. Surgury was done on November 10. The surgon told us thery removed the tumor completely, but becouse of anatomical limitation at that region, they could not remove the tumor as  a ball but they were forced to cut it into segements and remove it completely. After the surgery he went on a period of 33 sitting of radation therapy. rationatherapy was finished on October 19 of 2015. Now I want to know if he need chemotherapy or not? Can Yondelis be taken as a prevention from recurrence?

Thank you.

Good news is that your husbands tumor was on the small side for retroperitoneal - so there are better chances for a complete rescetion.  There was no local invasion of any other organs.  A little unusual to have the radiation as adjunct theraphy.

At this point it is waiting for a recurrance - and what that will be like to move forward.  Sarcoma is incurable with most success coming from a compete rescetion.  

If there is chemo in the future it will depend on the histollogy type.  Follow-up with regular CT scan is standard protocol post surgery.

Best wished for a long remission period!

Greg

I was diagnosed with liposarcoma at Mayo Clinic 3 weeks ago. I have well differentiated and dedifferentiated liposarcoma. Mayo indicated that chemo is only effective on 5% of patients with well diff and on 15% with dedifferentiated. I completed the first of 3 rounds of chemo a week ago. They used ifosfamise and doxorubicin each day for three days. On November 30 a CTwill be done to determine the effectiveness. Regardless of the ct outcome the treatment will be followed with 5 was of radiation, 4 weeks of recovery, then resection surgery. Location of sarcoma is in the abdomin next to spine. Surgery will include removal of left kidney, adrenal gland, spline, and the mass. On this forum it appears that most cases were for abdominal sarcoma locations un less they were another type which involves bone. Has anyone here had no recurrence with abdominal locations? Thank you all

Dear Beachygal:

Which Mayo Clinic are you at?  You need to be working with sarcoma specialist!  Retroperitoneal sarcoma is less common than extremity with complex issuses involving vital organs. I am ahead of you in dealing with this disease - into my 3rd tumor.  On the initial case - SURGERY is the most important form of treatment that will effect your furutre circumstances.

Well differentiated is a low grade mass that mutates into dedifferentiated a high grade more radical fast growing tumor.  Your turmor has both and is progressivly becoming more dedifferentiated which will create more problems.

I initally did 2 rounds of the chemo and then did CT to check for necrosis which there was non and went into surgery.  Radiation to the retropertineal area is not receommended because it will create more scar tissue and make the surgery more difficult.  Get to surgery before more damage is done from the fast growing large tumor that you have that is nonresponsive to chemo.

Make sure your surgery is the FIRST one of the day!  It will be difficult and the surgeon needs to be alert as possible and not tired from other surgeries.  Regardless of CT scan you do not know the real story until in surgery.  See if they can save your kidney - you are going to need this later.  I lost my left kidney in my first surgery because of the size of the mass but there was no invasion.  Surgeon could have worked harder to save it - was a 7 1/2 hour surgery.  Now my 3rd mass is around my remaining kidney - which would have to come out and leave me without any kidneys.

This disease is incurrable you will be monitored with CT scan until a new mass appears and you may have some treatment or srugery again - until the next one.  I am in my 7th year dealing with this.  At this time my new tumor is around the ureter of my right kidney with local invasion.  I have chosen to go on Ibrance oral chemo that may 50% chance stabalize the growth until I finally need to have surgery. Because your mass is so invasive at this time you really need to have it debulked and removed asap.

Best wishes for a complete rescetion and long period of no new growths!  Note this is my personal opinion you should concur with your Oncologist.

GFranco