retroperitoneal liposarcoma

armayn said:

6 surgeries in less than 10
MY story is as follows:
I found my first(retropertineal liposarcoma) tumor in the summer of 2002, having the surgery in September of that year. I remember my oncologist saying “Remember Arlene---life begins at forty” 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. Early in 2003 I had a hernia repair at that surgical sight. 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. Another hernia repair at that incision site in August- same year. 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. On the way out- we repair yet another hernia. The first surgical incision was ‘ship to stern’ so to speak, with all following surgeries from centerline to the right side –under my rib cage.
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. Worry about that when the time comes- if even then.
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 plus 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

CaliforniaLesli said:

Liposarcoma
Good Afternoon,

I just came across this website with its various Discussion Boards and found this one on liposarcoma.

I am a GRAND success story and hope I give any and all a great feeling for hope and moving forward. I had an 8 pound retroperitoneal liposarcoma in my admominal cavity. It was of intermediate grade. Was not given much hope prior to surgery....surgery brought on major resection of many organs (removal of the tumor, spleen, 80% of my stomach, duodenum, left adrenal gland, and part of my pancreas.)

Surgery was long - 8 hours intensive and very difficult. My surgeons were aggressive and
cut very large margins around the cancer. Giving me the best chance for survival.

I underwent 3 courses of chemo ---- in the days when it was a 24/7 drip for a week in the chemo ward.

Here is the good news - and the hope I hold out for all -- my surgery was in 1990. This coming July 2010 I will be cancer free for 20 years.

The journey has been hard, long and very challenging -- due to loss of organs and a compromised immune system. But, with a lot of practice and creative thinking, I get by on a daily basis.

My health insurance is high and has caused great hardship. I take 10 prescriptions daily..........but, I live a wonderful, cancer-free and happy life......you make each experience a challenge and climb high until you get there.

If I can help with any questions....................please ask - I will be as honest as you ask your questions.

Good luck...........hang in there. The unknown is frightening....but, the not trying is worse.

daisydc said:

liposarcoma
Hi:
My sister has had retroperitoneal liposarcoma for the past ten years. She was 34 years old at the time of initial diagnosis. Hers started by her left kidney and grew into the abdominal area. The first tumor was over nine pounds by the time the surgeons removed it. She started surgeries here in Syracuse, and we have been to Boston, Buffalo, and Memorial Sloan Kettering for treatments. She has had 17 surgeries/tumors removed over the past ten years. She has had clean margins several times and the cancer initially was well differentiated. Now, the tumor has mutated and is de-differentiated, which is much more dangerous. She has had her speen, kidney, ribs, uterus and colon removed. We tried doxyrubicin, which is a killer of a chemo drug, and it killed the tumors for five weeks, and then killed her heart muscle. We are really at the end stage of this disease. Many people survive and live full lives with this cancer. It is really treatable if it is contained and you have clean margins. We have not been so lucky. We have little hope at this point for Patti. It has been a long hard battle and we are all so exhausted and worn out by cancer. I feel that all of her doctors did excellent jobs, but with the variable nature of this cancer, it is impossible to predict prognosis, survival and outcomes from person to person. My advice is get the best people to help you and keep looking for a cure. It is too late for us, but your case seems treatable. God bless you and your husband.

Snappy712 said:

I just joined this site and saw your post
I was diagnosed with a liposarcoma retroperiteneum when I was 31. I am now 44 and am in full battle against this cancer which has continued to spread. How is you sister? Was she able to get out of the darkness? It's tough, I question it daily, I hope your sister is still here.

Snappy712 said:

I just joined this site and saw your post
I was diagnosed with a liposarcoma retroperiteneum when I was 31. I am now 44 and am in full battle against this cancer which has continued to spread. How is you sister? Was she able to get out of the darkness? It's tough, I question it daily, I hope your sister is still here.

CaliforniaLesli said:

Liposarcoma
Good Afternoon,

I just came across this website with its various Discussion Boards and found this one on liposarcoma.

I am a GRAND success story and hope I give any and all a great feeling for hope and moving forward. I had an 8 pound retroperitoneal liposarcoma in my admominal cavity. It was of intermediate grade. Was not given much hope prior to surgery....surgery brought on major resection of many organs (removal of the tumor, spleen, 80% of my stomach, duodenum, left adrenal gland, and part of my pancreas.)

Surgery was long - 8 hours intensive and very difficult. My surgeons were aggressive and
cut very large margins around the cancer. Giving me the best chance for survival.

I underwent 3 courses of chemo ---- in the days when it was a 24/7 drip for a week in the chemo ward.

Here is the good news - and the hope I hold out for all -- my surgery was in 1990. This coming July 2010 I will be cancer free for 20 years.

The journey has been hard, long and very challenging -- due to loss of organs and a compromised immune system. But, with a lot of practice and creative thinking, I get by on a daily basis.

My health insurance is high and has caused great hardship. I take 10 prescriptions daily..........but, I live a wonderful, cancer-free and happy life......you make each experience a challenge and climb high until you get there.

If I can help with any questions....................please ask - I will be as honest as you ask your questions.

Good luck...........hang in there. The unknown is frightening....but, the not trying is worse.

Hi All,

My mother has just been diagnosed with what is likely retroperitoneal liposarcoma. She is based in Delhi, India and we are looking for best liposarcoma doctors in India. Does anyone know of good liposarcoma doctors in India ?

We are primarily looking at Tata Memorial Hospital for Cancer Reaserach in Mumbai/Bombay, India. But I will be glad to learn about any doctors in India or USA.

Please let me know name or send me amessage. Thanks for your help !

Sinha

asinha said:

Need help with finding a doctor

Hi All,

 

My mother has just been diagnosed with what is likely retroperitoneal liposarcoma. She is based in Delhi, India and we are looking for best liposarcoma doctors in India. Does anyone know of good liposarcoma doctors in India ?

We are primarily looking at Tata Memorial Hospital for Cancer Reaserach in Mumbai/Bombay, India. But I will be glad to learn about any doctors in India or USA.

Please let me know name or send me amessage. Thanks for your help !

 

Sinha

Hello Mr Sinha,

My mother has been detected with same problem which is retroperitoneal liposarcoma. I am going to take more tests done from Dr Anita Borges (well know histopathologist in India). Can you please let me know which Doctors you have consulted so far ? Can you please guide ? I am in Ahmedabad, Gujarat. 

Thank you,

Rakesh

Ninappn said:

Liposarcoma stage 4
Hi there,

My sister who is 32 years old was diagnosed with liposarcoma in 2008, cancer we never heard of before. She underwent surgery in Germany and had the tumor removed ( Lower back close to the spine with a clear margin) followed by chemotherapy. She has had her scan on a quarterly basis. Due to her pregnancy in 2010 she stop the scanning for 9 months. In march 2011, after giving birth, the cancer reoccurred at the same spot, lower back growing very fast and graded as very aggressive. Again, surgery asap. It was a major surgery in hong kong , over 24 hours, involving 5-6 surgeons and 4 others on stand by in the the surgerical room. Her kidney was removed, several vertebraes with replacement, skin on the back, nervstrings which resulted in a low grade disability in her right leg. We were so thrilled when she woke up the next day after the marathon surgery as the doctor told us she will be in a stage of sleepiness for several days. The recovery was such a painful process for my sister, in every aspects. She had to b on her tummy for 2 weeks with no change of position just to avoid any wound infection on her back. After 5-6 weeks they did a MRI scan, the tumor has spread to her liver and the spinal bones, stage 4. Soon after the tumor compressed on the nerves which run through her legs causing both legs to be immobile. She was devasted and simply literally crashed into a black hole, rock bottom. The doc told her that any surgery is of no use therefore he urged her to do the chemotherapy. He wanted her to do the chemo as soon as the wounds on her back r healed but she decided not to do it. She has been far too weak to do the chemo.

2 weeks ago she returned with her 6 months baby and husband to Germany. There has no improvement of any sort whatsoever. She is on painkiller with a low dose of morphine lying in bed all day. A day care nurse and a physiotherapist go to see her at home on a daily basis, but she does not participate in the exercises as the painkiller causes headache, nausea, drowsiness. She has shut off herself, full of pity, suffers from depression, lost her joy in life, is gripped by severe sadness and grief. Friends and family have tried to uplift her spirit, encouraged her and we tried to apply alternative med such as Chinese herbs, body healing, accupressure, yoga to calm her mind, gentle tai chi movements with the arms only, foot reflexology, meditation......by the end of the day she told us she does not believe in anything.

We are beyond despair and grief. She has given up herself but we have not. Please is there someone who has liposacoma on the back close to the spine and has gone through it to give us some hope and support. My sister has not spoken or met anyone who suffers from cancer, particular who has liposacoma. I would love her to speak to someone who has gone through such experience.

I look very much forward to hearing from u. There is always hope and miracle. God bless u.

Regards,

Nina

same spot like your sister,

no more surgery can be done, only on chemo now.

do not know if it works.

howell58 said:

treatment
We have been told surgery is the only recourse to manage this type of cancer. Chemotherapy has no effect on it, and everything I have read on the internet agrees with that. Radiation too, has shown no statistics to prove a change in survival rate. I feel is it almost luck of the draw, and each person has a different outcome. It is unlike other cancers, where you can receive chemo and put it into remission. I love to hear the wonderful stories of people who have lived 10+ years after surgery but the doctors say recurrence is over 50% and can happen on a continuous basis.
Pray every day, every night, and every chance in between.

sloan ketterling is about the best palce to be treated. You guys are lucky to have that option.. most people dont. How did the surgery go for the spot on his lung back in 2010(?)

I too have been told that chemo and radiation are not an option... has not been proven to be effective. I have had 11 surgeries in 14 years with the most recent being jan 27th this yeaar. Always in my abdomen, right side. I am a 54 years old female, found my first tumor when I was 40. Tell me more!