retroperitoneal liposarcoma
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.
Comments
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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.0 -
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.0 -
From a Liposarcoma Survivor
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.0 -
Hi,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.
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!!0 -
In December 2007 I wasDeisy said: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!!
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.0 -
Treatmentbmscan said:From a Liposarcoma Survivor
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.
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.0 -
update on conditionCaliforniaLesli 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.
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.0 -
treatmentDeisy said:Treatment
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.
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.1 -
SuccessCaliforniaLesli 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.
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.0 -
helpCaliforniaLesli 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.
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 khan0 -
Hibmscan said:From a Liposarcoma Survivor
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.
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!
Matt0 -
like to hear from youMsl27 said:Hi
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
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.
Deb0 -
Hi Deb,deborah16 said:like to hear from you
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
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!
Georgie0 -
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.deborah16 said:like to hear from you
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
Liz0 -
I had a retroperitonealCaliforniaLesli 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.
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!!!
Liz0 -
I am 58 years old and I haddeborah16 said:like to hear from you
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
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!!!
Liz0 -
R.S.leapinliz77 said:I am 58 years old and I had
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
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!0 -
My BrotherCaliforniaLesli 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,
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?0 -
3 surgeries in less than 3 yearsleapinliz77 said:I am 58 years old and I had
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
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...0 -
6 surgeries in less than 10kimpetty said:3 surgeries in less than 3 years
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...
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.com0
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