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retroperitoneal liposarcoma

howell58
Posts: 12
Joined: Apr 2009

My husband is now 47 and was diagnosed 2 yrs ago with what they call "retroperitoneal liposarcoma". At first they thought it was kidney cancer, so they operated quickly, and removed the tumor and the kidney.
It took pathology 3 weeks to figure out what kind of cancer it was because we were told they were "baffled." We got refered to Sloan Kettering in NY because they said this is a rare type of cancer.
Turns out, after having CT scans at Sloan, they left behind an unclear margin and there was still cancer left in my husbands body. Found a small spot on the lung and had that removed, now 2 yrs later he is scheduled for surgery on the 16th of Nov. to try and get this leftover bit out of his abdomen.
The surgeon says it recurs on avg. every 2-3 yrs., and if that holds true, I guess that it better than the alternative.
I am so concerned about the surgery itself, and if it they will get it all this time.
It has just started to grow so that is why the surgery is being done now.
If anyone has a similar story, or more info on this disease, please let me know.

daisydc
Posts: 1
Joined: Nov 2009

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.

abdu.patel
Posts: 1
Joined: Aug 2012

I just want to know if what will be better treatment for my uncle as he is just 37 years old and married have 4 kids.. he complained that he had severe back pain and after the test we have found out that he have cancer.

The report says as follow.

Clinical Information:

Severe low back pain, CT ---} Huge retroperitoneal lymph node with cervical lymphadenopathy

Nature of Specimen:

Left Cervical lymph node

Gross Description:

Received in formalin labelled " Left Cervical lymph node " , it consists of a lymph node mesuring 1 cm. Trisected and submitted in to in on cassette.

Microscopic Examination:

Secition from lymph node show loss of normal architecture with replacement by a nodular infiltrate of atypical lymphoid cells with centro blasts that are more than 15/HPF. Diffuse areas form an appreciable percentage of the tumor area. There is positive staining of the follicular cells by the pan b- markers CD20, CD19 and CD79a and most of the tumor cells show bcl-2 over expression.

Diagnosis:

Let cervical lymph node biopsy: NHL B - cell type, consistent with follicular lymphoma (FL) grade 3 with diffuse areas.

Diagnostic Codes:

T-C4200 ( CERVICAL LYMPH NODE, NOS) P1-03100 (BIOSPY,NOS), M-95913 (NON-HODGKIN'S LYMPHOMA,NOS)

CaliforniaLesli
Posts: 4
Joined: Nov 2009

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.

Deisy
Posts: 2
Joined: Feb 2010

Hi,

my husband had a retroperitoneal liposarcoma 6 month ago - it was completed resected and his left kidney was removed too, but the doctors told us that everything should be ok and he didn't need anything else - no radiotherapy or chemo.
Now, in his first control exams we discovered that he has a recurrence at the same place. One doctor told us there's nothing to be done and we should just try to use chemo to "see if it's possible" to control it and just accept that!! I can't accept that, no like this! There's no other problems in his other organs... Tomorrow we have an appointment to his surgeon to discuss the possibility of a new surgery. We just need hope...
you story made feel better and with more hope. Thanks!!

bananas
Posts: 1
Joined: Feb 2010

In December 2007 I was diagnosed with same thing, Operated January 2008 removed basket ball sized tumor and left kidney. Recurrence six month later in August. surgeons did not want to operate yet there is no other viable treatment. I persisted and they operated November 4, 2008. Small recurrence in May 2009 removed in office. I would not give up on surgical approach. If I had listened to them, I would be dead today. Even if you did chemo which there is no medical evidence to suggest that this would work, tumor would have to be surgically removed eventually anyway. Only other option is entering a clinical trial but wouldn't do that until you have exhausted surgical approach because to be eligible for any trial, you cannot have had anyother chemical treatment. the longer you put off drug theraphy the higher the likelihood that advances may be discovered From all my research surgical removal is still the best and only effective treatment for this disease. I wrote a book about my experience called I Don't Buy Green Bananas which is available at amazon.com. the other down side to chemo and radiation is that they come with their own problems and can cause more damage than good.

Will pray for wisdom and guidance for you and your husband - and his doctors.

laker67
Posts: 1
Joined: Feb 2013

My husband is 63 and just had a 20 pound liposarcoma, his left kidney, a third of his colon, and an adrenal gland removed in October.  The CT indicates a smaller mass now forming in the anterior part of his abdomen.  They want to watch it and do another scan in 3 months.  It has already grown from 2.8 cm to 4.4 cm since December.  While I don't like the thought of chemo, I'm not crazy about wait and see either.  His original presumption was negative margins on a pleomorphic sarcoma.  The lab indicated positive margins on a well-differentiated.

 

Please update your treatment.

howell58
Posts: 12
Joined: Apr 2009

Well, after a 4-month scan doctors found a small spot on my husband's lung. He is scheduled for surgery this Friday. Lung doctor feels optimistic, but I am always so skeptical. I feel like every time we go to the doctor we get unexpected news. My husband also had a pet scan on Friday, which has never been requested before, which has me a nervous wreck. So afraid of finding other spots that didn't show on the CT. On pins and needles waiting for the phone to ring. I read many, many, scary stories, and do not find much in the way of positive ones, with this type of cancer.

howell58
Posts: 12
Joined: Apr 2009

Your story is certainly inspiring. Where did you have your surgery?
My husband is treated at Sloan Kettering in New York. Doctors there and everything I have researched on the internet says that chemo has no effect on this type of cancer. Why did your doctors give you chemo?
My husband is having surgery again this Friday. Found a small spot on his lung. Metastisis is never a good sign.

sagheer
Posts: 2
Joined: Dec 2010

pl let me know case history i have removed my first well differentiated liposarcoma in mid lower abdomen extending into pelvic measuring 14 cm /7.9/12cm on 26 05 2010 again on 01 nov 2010 my ct can has noted my fatty mass measures like 5cm /5cm in retroperitoneal liposarcoma with the left psoas muscle below the level of inferior pole of left kidney i like to clear this thing that at the time of my first surgery on 26 05 2010 this was like 2.5/2.5 cm which was not noted at the time of first surgery this mass has grown over the interval period & removed on 2nd surgery on 13 11 2010 with measured like 5cm /5 cm my histopathology report is liposarcoma showing dedifferentiaton (see note) the retro peritoneal tumor has a predominantly spiindle celll morphoology howerer a number of s-100 positive tumer cell are still present . similar cell are also seen in specimens 1&2 overall the findings are consistent with a liposarcoma which has undergone de _differentiation i like to know what is my next treatment with my 2 surgery in six months what to do next.....pl give me a gide line.... about my case i am living in pakistan let me now the cost of treatment & what you will do next in my case thnx sagheer khan

leapinliz77
Posts: 6
Joined: Jan 2011

I had a retroperitoneal liposarcoma, attached to my right lower quadrant rectus muscle, removed on 1/14/11. Tumor size was 10 x 10 x 9 cm, weight of tumor was just under 2 lbs. It is a dedifferentiated cancer, grade 3 (high grade). This was not attached to any vital organs except for a small attachment to my small intestine and they removed that portion of the small intestine. I had two consultations and chose to go with removing the tumor first and then radiation. I have been told that I had clear margins; however, one margin was very close so I start to undergo radiation therapy today. I would love to keep in touch and share my journey. Any advice would be greatly appreciated.

Bless you and I wish you continued good health and another 20 years!!!

Liz

gracie422
Posts: 1
Joined: Mar 2011

Hi,

What an incredible story. You have such an inspiring, positive outlook. I do not have any experience with any kind of cancer, so I am reaching out for my brother who was just diagnosed with Liposarcoma. He is 30 years old and the doctors are saying that it has not spread. He has a huge tumor on his neck the size of a softball. They are going to operate in the next few weeks. We have the same dad but different mothers. His mother died of stomach cancer, his grandma died of ovarion, and his aunt of brain cancer. I hear that it is very optimistic that it has not spread. When do we find out what stage he's in? What are your own thoughts on his scenario based on your experience? What support can I offer him?

greenmountains
Posts: 1
Joined: May 2012

Thank you so much for your inspiring story. It is so helpful to hear them now and then. I am writing for my husband who (at 67) was diagnosed with a retroperitoneal liposarcoma in November. He had radiation prior to what was to be surgery, but then they decided against it when they found it had spread to his lungs and adreanal. My question is did you have then, or after any spread of the cancer? It seemed like they were afraid of the surgery because it was going to be quite extensive, but then yours sounds even more extensive.
I am so glad that you are enjoying life.
I wish you all the best.

fosterchild7
Posts: 1
Joined: Nov 2012

Thank you for such an up lifting story!

bmscan's picture
bmscan
Posts: 36
Joined: Apr 2007

I am 56 and have had seven tumors over the past 11 years and still doing fine. They should be doing radiation to kill the possible margin left over. Please read my story -> click on my name (on the left BMSCAN)and it will take you to "10 Years, 7 Tumors, And New Technology… Beating the Odds!"

It is NOT a negative story!

If you would like more info, let me know.

Deisy
Posts: 2
Joined: Feb 2010

Hi everyone,

thanks a lot for your messages!
My husband is now doing radiation, it'll be 25 sessions and after that they'll remove the tumor. We hope that can shrink it, because drs. said that there's a possibility that they have to remove his spleen and part of pancreas - not because the tumor has spread to them, they are free, and at least we know - far from the tumor, but as a recurrence prevention. (!!)
We are thinking about to see other drs. to have other opinions. He's doing his treatment in the best cancer center in Sao Paulo, Brazil - a worldwide reference, but as it's a rare cancer we have to be sure... My husband has only 48 years old!
Drs. said that after surgery is almost sure he'll do chemio... this makes me feel really worried.
We are worried, afraid and stressed... but your stories make me have more hope.
I'll look for the book... all kind of help and information are important at this point.
Thank you so much for the information... it's very important for us.

howell58
Posts: 12
Joined: Apr 2009

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.

Msl27
Posts: 1
Joined: Feb 2011

Im the loving son of a liposarcoma survivor and I would love to here a little more about your story fill you in about my fundraiser my sisters and I started and connect you with my mom.

Bests!
Matt

deborah16
Posts: 3
Joined: Jan 2011

I had the liposarcoma cancer. I had radiation for 25 sessions and then surgery where they removed a ten pound tumour and various organs. This was in November, 2010 and I'm still recovering from the surgery. I pray it doesn't come back but the only ones I've read about it does. I would love to hear from you to keep my spirits up. I'm 54 years old.

Thank you and hope to hear from you.

Deb

tobgah
Posts: 6
Joined: Mar 2011

Hi Deb,
I too had my lipossarcoma surgery on Nov.2009. The surgeon removed the tumor along with some muscles and shave down the transverse bone on my spine ( L3/L4/L5) plus the tip part of my pelvic bone was removed. I had 25 sessions of radiation prior to surgery.

Since January 2010 to current, I have had my follow up CT scans every 3 months to monitor my progress. So far, thank God, there is no recurrence of the tumour. Each time I go for my CT Scan, I pray and try really hard to maintain positive feelings. I am still healing from my surgery as muscles were removed so I have a bit of mobility issues, but at least I can still move around and daily I count my blessings, my gratitude and God's grace.
Stay positive and if you can practice Laugh Yoga, it is good for us to keep stress free and somehow maintain a sense of humour as part of our spiritual healing. I will keep you in my prayers as well. All the best!
Georgie

leapinliz77
Posts: 6
Joined: Jan 2011

I had a retroperitoneal liposarcoma, attached to my right lower quadrant rectus muscle, removed on 1/14/11. Tumor size was 10 x 10 x 9 cm, weight was just under 2 lbs. This was not attached to any vital organs except for a small attachment to my small intestine and they removed that portion of the small intestine. I have been told that I had clear margins; however, one margin was very close so I start to undergo radiation therapy today. I would love to keep in touch and share my journey. If I may, can you fill me in on what you experienced during your radiation treatments. I work as a medical transcriptionist and want desparately to go back to work as I am bored out of my mind but I am afraid to go back and find out that I won't be able to work. Then I have to begin the whole disability game again. Any advice? Bless you and I wish you the best.

Liz

leapinliz77
Posts: 6
Joined: Jan 2011

I am 58 years old and I had a retroperitoneal liposarcoma, attached to my right lower quadrant rectus muscle, removed on 1/14/11. Tumor size was 10 x 10 x 9 cm, weight of tumor was just under 2 lbs. It is a dedifferentiated cancer, grade 3 (high grade). This was not attached to any vital organs except for a small attachment to my small intestine and they removed that portion of the small intestine. I had two consultations and chose to go with removing the tumor first and then radiation. I have been told that I had clear margins; however, one margin was very close so I start to undergo radiation therapy today. I would love to keep in touch and share my journey. Any advice would be greatly appreciated.

Bless you and I wish you continued good luck that it doesn't come back!!!

Liz

tobgah
Posts: 6
Joined: Mar 2011

Hi Liz,
I wish you continue good luck and health. We need to keep our faith strong and try to maintain a positive outlook always. As for my journey, I continue to pray, keep a strong faith, focus on things that gives me high spirit, maintain a sense of humour and above all just believe that God will continue to watch over us. Just make sure to eat healthy, organic foods and try to avoid sugar as much as you can. I myself avoid sugar, chicken and red meats. I switch my food intake towards more fruits and vegetables, grains, nuts, fish and olive oil. What ever Dr. Oz is saying about proper nutritional foods, I try to follow it regularly. Also, if you can, you might want to read up on "alkaline water", it is very informative.
God bless and keep up that fighting spirit and laugh from your belly to benefit from getting as much oxygen. I try to maintain a good sense of humour no matter what. As for me, I trust God's plan for me no matter what for he knows me better than I know myself.
Sending you positive energy and lots of happy thoughts in between. Take care, be brave and stay positive ... meditate!

kimpetty
Posts: 1
Joined: Jul 2011

My story is as follows: I was diagnosed in March 2008 with retropertineal liposarcoma after many different tests. My first surgery was in March 2008 where a 20 pound tumor and my left kidney were removed. It turned out great compared to the prognosis going in, which was bleak. The tumor came out as one huge mass and they thought they had gotten it all with clean margins. My next scan was clear but the next one was not. I had my next surgery in April 2009 where 3 golfball sized tumors were removed from my psoas muscle area. Great news but then the pathology came back that there were still cancer cells around the area. My doctor does not want to use chemo or radiation due to the location of my cancer. I look at that as great news and tell everyone that I have "good cancer". I have seen how sick those two treatments can make people and I feel blessed not to have to go that route. I thought I was sailing along very well until my 1 year checkup and bam, another one the size of the first had appeared. So, in August 2010, I had it removed along with about 8 inches of my colon. Currently, I am due my one year checkup on 8/11. We are doing physical exams and I have not had a CT since last July....trying to keep so much radiation out of my body. I have reduced as much stress in my life as possible and stay as active as I possibly can around the house...cut my yard, play softball, walk daily....etc. I am 47 years old and just will not let this thing beat me. I know it is very difficult to remain strong and positive at all times, but the more you can not worry about it and live life, the more peace you can find in the blessing cancer has to offer. It took me awhile to get the blessing part, but if you can accept it as that and trust and believe in your higher power and all the love that surrounds you, the daily living with it becomes easier.

I hope this helps someone or at least causes you to think and ask more questions. I am just a simple person that tries to live life, love, laugh and enjoy what you like for as long as you are given. At least you know what cards you have in your hand...

armayn
Posts: 9
Joined: Apr 2008

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

Ninappn
Posts: 13
Joined: Aug 2011

Hello to everyone on this page,

I have read ur stories and glad to hear that my sister is not alone with this unknown cancer. The last entry is from Armayn , July 2011. How have u all and ur loved ones been?

I posted my sister s story , liposarcoma stage 4, in august 2011 but have no idea where I can locate it and therefore cannot check if anyone has replied. Find it difficult to navigate the website. Do I look up the specific cancer type , sarcoma, and go to the topic " liposarcoma stage 4" ????? I did it but cannot find my posting. Gosh, so frustrating cause my sister is running out if time, she has given up, suffers from severe depression and so grip with sadness and cannot move both her legs......I would love her to talk to other liposarcoma patients/ survivors to give her some hope, a glimpse of faith and light at the end of the tunnel. If she has to die soon at least with peace. She is 32 and has a 6 months old baby.

Please help!

Nina

Ninappn
Posts: 13
Joined: Aug 2011

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

Snappy712
Posts: 1
Joined: Jul 2012

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.

armayn
Posts: 9
Joined: Apr 2008

Willing to share my story, how are you doing?

armayn
Posts: 9
Joined: Apr 2008

Willing to share my story, how are you doing?

armayn
Posts: 9
Joined: Apr 2008

Willing to share my story, how are you doing?

armayn
Posts: 9
Joined: Apr 2008

Willing to share my story, how are you doing?

Angelfyr9
Posts: 1
Joined: Oct 2012

My father was diagnosed in 1989. He had a 10 pound tumor removed from his abdomen at that time, it was encapsulated, and they "got it all".

1991, it came back and there was another surgery, radiation and chemo. During that surgery they nicked his vena cava and he lost 40 pints of blood. He was weaker during that recovery than others. He was in remission for... about 12 years before it came back.

My timeline is screwed up at the moment, but there were approximately six surgeries between 2003'ish and 2009'ish. The last was 2009/2010 and his surgeon said the tumor was too involved with his intestines, his vena cava and a large muscle that runs along back there. She "cleaned out" the tumors, which had begun becoming necrotic from the inside out. She reduced the tumor mass by about half, but said no further surgery could be done.

Late 2010 Dad "sprung a leak". His sidewall had become so weak, and there was so much pressure, that his body released it. I believe it was within 12-16 weeks after the last surgery. He started having trouble with edema in his lower half, and had great success with a contraption called the FlexiTouch. He lost some function in his right leg due to the tumor pressing on that nerve/muscle (I believe it was the sowa muscle?). That was toward the end.

The end was quick, relatively. He was 71, just missed his 72nd birthday in June. Two weeks before he passed, his body created it's own colostomy. The wound wizards (and they truly are!) set him up with a custom bag, and we brought him home. He was in hospice care, but went in and out a couple times at the end. The first time was rectal bleeding, the second time was the bag. He lasted six days after that. Either he went septic or bled out, I prefer to think the second. He was fortunate enough to stay at home, and his care giver and I worked as a team once he couldn't help anymore.

There were other incidents peppered in through the years... mysterious blood loss, pulmonary embolism (2011), serious blockage, constant digestive problems, etc.

I think the reason he kept bouncing back from the surgeries so well is that he was a ballroom dancer. He danced with Arthur Murray until he went as far as he could go without going professional and then just did it for fun. He retired early and re-discovered his passion for scuba diving until travel became too uncomfortable. He had a house in the mountains that his parents bought when he was a teen. He loved going out there to rest and relax, and did until last year. Keep dancing, keep active, and keep positive... it will help. His hospice doctor would come by the house just to chat... he said Dad had the most positive spirit and outlook he had witnessed. Love your people, keep your chin up, and cherish each moment.

Peace

asinha
Posts: 2
Joined: Jun 2013

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

nowhisnurse
Posts: 1
Joined: Feb 2014

My boyfriend was diagnoised with a retropertineal liposarcoma on 11/2013 he had a 12+inch tumor removed from his pelvic area on newyears eve, he is 30years old. They had to remove his bladder, rectom, and prostate in order to remove the tumor and were able to get negative margins. They have graded hin with a T2b sarcoma. This makes his almost a stage 3. It has not spread and his limfnodes were clean of cancer. He now has a colostomy bag, urine bag, and of corse a whole new life having his prostate completly removed. Our daughter is turning 2 in june, and for this reason he is staying strong in hopes to warxh his daughter grow. Sarcoma is very scary, and since he is still recovering from this major surgery , he will be starting radiation therapy next week to do 6 weeks aimed at the sergical bed to try and prevent a reaccurance. Unfortunatly his tumor had ruptured in his stomach a few days before sergery so he has a very high chance of this demond returning. I am his nurse, his backbone, his rock... threw this journey he has chosen to do little reading,  I believe because he is scared. I'm obsessed with finding hope, survivor stories, new advances in medacine. ANYTHING to grasp hold to. We are young, only been together 4 years, have a brand new daughter I need my man to survive many years of this horrible cancer. Reading all these stories of  multi sergerys makes me feel hopeful and scared! He's very strong and can't imagne cancer taking his life, I would love to speak to anyone with any advice, insight, anything!! We are in the chicago area, I believe he has one of the best sergons in this area witch gives me great hope. The dr don't give you prognosis past 5 years, hearing stories of people older then him, whove endured years of sergery and 10-20 years of survival gives me hope. We will continue fighting this battle because life is precious and we will not let the cancer win.

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