retroperitneal liposarcoma

sakire1118

my wife who had problems going to the bathroom felt something hard on the right side of her abdomen, and it was wd liposarcoma, they removed a huge tumor and just about the 5 year mark, she felt it again, and it was not as big this time, and another surgery with no follow up treatment, then after 7 and a half year later, it showed up again in the same area and that was last september, after the surgery there was no follow up treatment again, and she was clean in june of this year. but again beginning of september she felt a hard spot on the opposite side of the original tumor side. and a new ct scan showed a golf ball size tumor on her left side and 2 small ones on the original side which was the right side of the abdomen.
And the surgeon told us that these may be dd grade tumors now that they are coming alot faster and even that they are all resectable she should have chemotherapy before surgery.
I have been reading about this type of cancer for quite a long time, and chemo is not really very effective with this tumor.
If anybody out there have an experiance with chemo and how effective it is or any other ways to deal with it before or after the surgery to reduce reoccurence , please let me know
before we go to see the oncology specialist. She is getting her treatment at John hopkins and operated by Michael Chotie who has a great reputation as an oncology surgeon.
Also does anybody have any idea who maybe a good medical oncology person at John Hopkins.
Please respond to me at TWA1230@MSN.COM

sandy1962

Me Too
I was just told (5 days ago)I had leiomyosarcoma. I am terrified. I cannot answer any of your questions but would like to know what your wives initial diagonsis was (what stage). I had a 16cm tumer removed during a hysterectomy (low grade). My first appointment with the oncologist is 2 days away and I would like to have as much information as I can. Thanks

dediff

I was diagnosed July 2008 with dedifferentiated liposarcoma of the retroperitoneum. My first surgery was in August 2008 which removed large tumor left lower abdomen along with left psoas muscle. Radiation followed and I was told I was in remission. Second tumor and second surgery done October 2009. Tumor this time was next to my stomach. Third set of tumors showed up in March on my spleen. Surgeon told me I needed chemo before he would consider another major abdominal surgery. First oncologist told me he would treat aggressively with doxyrubicin but it wouldn't really do any good and the side effects would make me sick. Found a clinical trial in Santa Monica which combined doxy with trial drug Threshold. After 6 cycles of taking both drugs I had all the doxy allowed and I've been on Threshold only past 2 months. This regimen has kept tumors stable but not shrinking. Quality of life is good. Next option is Yondelis also in clinical trial at Sarcoma Center in Santa Monica but I haven't come to that bridge yet.
I'd also like to hear from anyone who has had experience with this type of tumor and chemo/clinical trials.

deborah16

liposarcoma of the retroperioneal
Hi, I found a tumour on the left side of my stomach, it was removed weighing ten pounds. They also removed various other organs. The first course of treatment for me was radiation. I live in Ontario and went to radiation in Toronto. I was told chemo was ineffective for this type of cancer. The radiation was basically to kill any cells around the tumour that might have been infected. They removed my left kidney, spleen, part of the liver, pancreas, colon, adrenal glands and lymph nodes. I am still recovering from the surgery. If you have any questions or I can you, send me a line, Take care, my email is deborah.watson@hotmail.ca

IronLion

deborah16 said:

liposarcoma of the retroperioneal
Hi, I found a tumour on the left side of my stomach, it was removed weighing ten pounds. They also removed various other organs. The first course of treatment for me was radiation. I live in Ontario and went to radiation in Toronto. I was told chemo was ineffective for this type of cancer. The radiation was basically to kill any cells around the tumour that might have been infected. They removed my left kidney, spleen, part of the liver, pancreas, colon, adrenal glands and lymph nodes. I am still recovering from the surgery. If you have any questions or I can you, send me a line, Take care, my email is deborah.watson@hotmail.ca

Hi, my husband was diagnosed with RPL last september, had a huge mass removed (about 32cms) together with his right kidney; doctor said they couldn't take it all out, only about 90%, meaning margins were not clear. After the surgery he was on radiation for 6 weeks.

Yesterday, almost exactly 6 months from the day of surgery, doctors told us the mass is back in the same area but they are not eager to perform another surgery this soon, so they are suggesting chemo this time.

It's all so confusing, my husband recovered so well after such a major surgery, he gained all his weight back and handled the radiation smoothly, it's hard to believe that this battle only seems to be getting started.

How does chemo work? does it help to control the tumors? we were always aware of the possibility of recurrence for RPL (just not this soon). But at this point the only choice is to keep fighting, whatever it takes.

Please, I'd appreciate any tips on how to make his chemo treatment as comfortable as possible. Can he still work?, should he?, or is he going to be bed ridden for months?

We keep praying, for us and for all of you.

deborah16

IronLion said:

Hi, my husband was diagnosed with RPL last september, had a huge mass removed (about 32cms) together with his right kidney; doctor said they couldn't take it all out, only about 90%, meaning margins were not clear. After the surgery he was on radiation for 6 weeks.

Yesterday, almost exactly 6 months from the day of surgery, doctors told us the mass is back in the same area but they are not eager to perform another surgery this soon, so they are suggesting chemo this time.

It's all so confusing, my husband recovered so well after such a major surgery, he gained all his weight back and handled the radiation smoothly, it's hard to believe that this battle only seems to be getting started.

How does chemo work? does it help to control the tumors? we were always aware of the possibility of recurrence for RPL (just not this soon). But at this point the only choice is to keep fighting, whatever it takes.

Please, I'd appreciate any tips on how to make his chemo treatment as comfortable as possible. Can he still work?, should he?, or is he going to be bed ridden for months?

We keep praying, for us and for all of you.

RPL
Hi, I'm so sorry to hear about this. I too had RPL, I had the radiation first and then they removed the tumour, left kidney, spleen, some colon, some pancreas, some glands and nodes. I'm still in a lot of pain and burning sensation. I was told there would be no chemo as it was ineffective. I am from Canada so perhaps they have different information here on this type of cancer. I have my six months check up next month. My surgery was November, 2010. It seems like this cancer does have a recurrence but keep praying, stay strong and don't let it get the best of you. My thoughts are with you. If you have any questions, feel free to write me at deborah.watson@hotmail.ca I have some questions too, about how long the pain lasts, I thought I would be clear by now. Take care, Deborah

magmom02

dediff said:

I was diagnosed July 2008 with dedifferentiated liposarcoma of the retroperitoneum. My first surgery was in August 2008 which removed large tumor left lower abdomen along with left psoas muscle. Radiation followed and I was told I was in remission. Second tumor and second surgery done October 2009. Tumor this time was next to my stomach. Third set of tumors showed up in March on my spleen. Surgeon told me I needed chemo before he would consider another major abdominal surgery. First oncologist told me he would treat aggressively with doxyrubicin but it wouldn't really do any good and the side effects would make me sick. Found a clinical trial in Santa Monica which combined doxy with trial drug Threshold. After 6 cycles of taking both drugs I had all the doxy allowed and I've been on Threshold only past 2 months. This regimen has kept tumors stable but not shrinking. Quality of life is good. Next option is Yondelis also in clinical trial at Sarcoma Center in Santa Monica but I haven't come to that bridge yet.
I'd also like to hear from anyone who has had experience with this type of tumor and chemo/clinical trials.

treatment options and hospital ?'s
Hi! My very dear friend was diagnosed Friday with Stage 3 Liposarcoma in the retroperitoneal area. It is myxoid and Round cell. It is 8x8x12 in size and high grade. She is trying to figure out where she should go. She is going to Dana Farber on monday and sent info to several others....any thoughts or ideas about treatment, hospitals, etc would be so greatly appreciated!

jos

deborah16 said:

RPL
Hi, I'm so sorry to hear about this. I too had RPL, I had the radiation first and then they removed the tumour, left kidney, spleen, some colon, some pancreas, some glands and nodes. I'm still in a lot of pain and burning sensation. I was told there would be no chemo as it was ineffective. I am from Canada so perhaps they have different information here on this type of cancer. I have my six months check up next month. My surgery was November, 2010. It seems like this cancer does have a recurrence but keep praying, stay strong and don't let it get the best of you. My thoughts are with you. If you have any questions, feel free to write me at deborah.watson@hotmail.ca I have some questions too, about how long the pain lasts, I thought I would be clear by now. Take care, Deborah

New
Hi I have just found this site and have been interested in reading about the experiences and treatment of others who have been affected by retroperitoneal liposarcoma. I was diagnosed in Feb this year and was opperated a week later. They removed a 4.4kg tumor and my left kidney. I am still recovering from the surgery.I am interested to know how long others have taken to recover? I realise everyone is different and size of tumor, what parts have been removed, age etc. impact reovery but it would be good to chat to others who have been through something similar. I have also been challenged by my families response to my diagnosis is that common for others too?

armayn

jos said:

New
Hi I have just found this site and have been interested in reading about the experiences and treatment of others who have been affected by retroperitoneal liposarcoma. I was diagnosed in Feb this year and was opperated a week later. They removed a 4.4kg tumor and my left kidney. I am still recovering from the surgery.I am interested to know how long others have taken to recover? I realise everyone is different and size of tumor, what parts have been removed, age etc. impact reovery but it would be good to chat to others who have been through something similar. I have also been challenged by my families response to my diagnosis is that common for others too?

I found my first tumor in the summer of 2002, having the surgery in September of that year. I remember my oncologist saying “remember Arlene- life begins at fourty”’ Easy for him to say right! The tumor was eight and a half pounds, about the size of a football. Radiation was done on the operating table to what was believed to be the tumor bed, appendix was removed. Next tumor was found via ct-scan in June of 2005, surgery to follow in July. Tumor did not come back on the tumor bed, so radiation -on - table again. April of 2006 brought my third surgery at which point they decided radiation was not effective as tumor came back at the site of radiation. This time they took gallbladder and right adrenal gland as they had been scrapped for cells at each surgery and were in a weakened state. July of 2008 brought my fourth occurrence. This time they took my right kidney as well, scrapped too many times and in a weakened state, overworking the left kidney. March of 2010, my fifth at which time they had to leave the tumor on my vena cava, as the lines were not well enough defined to attempt removal without possibly doing more harm than good, with my most recent surgery being in May of this year(2011). They were able to get the tumor off the vena cava as well as one that had grown into my psoas muscle; the muscle is in the same area and is the muscle that makes it possible to lift your leg, climb stairs etc.
So, to shorten up this story, this is probably the last time they will/can do surgery. We are after a quality of life thing now. We will ct-scan once /year and watch it.
At the onset of this whole surgery, they told me that the life expectancy/mortality rate with this type of cancer is fifteen years. With nine years in- I cannot fathom that I only have about six years left of my life.
The **** of it all is that I feel great. I rebound after surgery well each time. Usually just a little weak and lacking energy for a couple of weeks, but other than that……….
We just have to stay positive and try to keep a good attitude, even though sometimes it isn’t that easy.
I am always willing to share my story with anyone. Email armaynchristensen@hotmail.com

Charmin2011

deborah16 said:

RPL
Hi, I'm so sorry to hear about this. I too had RPL, I had the radiation first and then they removed the tumour, left kidney, spleen, some colon, some pancreas, some glands and nodes. I'm still in a lot of pain and burning sensation. I was told there would be no chemo as it was ineffective. I am from Canada so perhaps they have different information here on this type of cancer. I have my six months check up next month. My surgery was November, 2010. It seems like this cancer does have a recurrence but keep praying, stay strong and don't let it get the best of you. My thoughts are with you. If you have any questions, feel free to write me at deborah.watson@hotmail.ca I have some questions too, about how long the pain lasts, I thought I would be clear by now. Take care, Deborah

RPL in Canada too
Hello Deborah, I just signed up to this network and it is the first time in 8 years that I have been able to hear about others experience with this cancer.
My husband was diagnosed in 2003 after they thought he had a bladder infection, only to find that he had retriperitenal dedifferentiated liposcarma stage IV. They removed a tumor the size of a volleyball from his abdomen and told us they were not able to get it all, the margins were not clear. We were told this would recurr but no idea as to when. 9 months later it recurred again, but a few tumours this time - chemo and radiation were both done on him and surgery performed a few months later. The tumors were on the appendix, the main artery to the right leg and on the ureter. He had 3 major surgeries done back to back, and unfortunately lost some use of his leg because during one surgery upon removal of the tumor they lost the blood supply to his leg. Subsequently he was having ct scans every month for about 6 months, then every 3 months, then every 6 months. The cancer stayed quiet for a couple of years, however it did recur last year another major surgery and the margins left behind again were not clear. 1 year later, we have been told it looks as thought it is back, we are heading down to see the surgeon in few weeks. It has been 8 years now, and at first he was only given about 3-6 months to live.