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Pleomorphic Liposarcoma-anyone else??

kellyradeke's picture
kellyradeke
Posts: 5
Joined: Jul 2004

I am a 36 yr old who was just diagnosed w/ a high grade pleomorphic liposarcoma. It was removed two weeks ago and I had my first oncology appt. I was referred to a specialist in seattle due to how rare of cancer I have. Is there anyone else out there w/ this same type of sarcoma? I have not begun treatment but will start in two weeks. Needless to say Im wicked scared...

Mike99's picture
Mike99
Posts: 12
Joined: Mar 2003

Kelly I am Michael and I have been on this site for a while. I am a two time survivor of Lyposarcoma. Treatment is not easy but it will help If you have any questions you can find me in the Chatroom where you may also bump into my "twin" as i call her pilgrim who is also a Lyposarcoma Survivor. You may also contact me through my webpage if you just go to "personalweb pages" and type in Mike99 in your search box. I am a little late in getting to this post but you may contact me and i will be glad to answer any questions you may have.
God Bless and take care and I look forward to hearing from you.

almo
Posts: 3
Joined: Sep 2004

Just getting ready for wide excision of a liposarcoma tomorrow. I'll check back in to see how things are with you when I get out.

nursetina911
Posts: 1
Joined: Oct 2005

my grandmother was recently diagnosed with pleomorphic sarcoma. Is there a difference? Thanks and good luck to you!!

allemann
Posts: 1
Joined: Feb 2010

Hi kelly, my name is karen. It's feb 2010. I haven't seen any postings from you except the one from july 15,2004. I have just been diagnosed w/ pleomorphic liposarcoma. I'm hoping that you are well and could maybe talk to me.

DeniceH's picture
DeniceH
Posts: 9
Joined: Sep 2009

Hello all,

I had a pleomorphic liposarcoma removed from my thigh a year ago this month. I went through a six week course of radiation. I am grateful to be alive and happy to help out in any way I can to answer questions or just be here to support others with this rare cancer.

AnnaD2
Posts: 1
Joined: Jun 2010

Hi All,
My name is Anna and my father was diagnosed with Pleomorphic Liposarcoma about 5 years ago--the average lifespan for those afflicted with his symptoms. His health was improving and it appeared that radiation, chemo and multiple surgeries on tumors in his leg and lower abdomen/upper thigh were successful. Recently, I've learned one of the tumors has grown back rapidly and the cancer has metastisized (spread) in general. In fact, new tumors around his spinal cord have obstructed his nerves, causing pain in his legs and loss of bowel and bladder control. My father is only 56 years old and had a healthy life until the cancer discovery. He has been fighting the prognosis and attempting to remain positive, but at this point he is just so weak and tired. The doctor's continue to throw medical terms at me and claim there isn't much more to be done--but I don't want to give up hope for him or for me.

Does anyone have any information about what can be done for those in later phases of this disease? How can I, as his daughter, keep him strong and positive. How much do I tell him about his condition if the doctor's are intentionally being vague to prevent him from falling into a depression?

I would greatly appreciate any and all feedback, support, prayers, etc. I will be thinking of all of you afflicted as well.

Thank you,
Anna

bellasbell
Posts: 6
Joined: Feb 2008

Hi Karen
I had pleomorphic sarcoma diagnosed almost 2 yrs ago. I underwent chemo, 60 rounds of radiation and surgery. I am still cancer free! The worst part is they had to take out much of the muscle in my right thigh causing my leg to give out and fall sometimes. The radiation caused alot of scar tissue which is still painful. However...Im cancer free and thats the good part. I hope you are doing well please post info. on how you coming along
Corinne

nevdal
Posts: 1
Joined: Jul 2010

My Dad was recently diagnosed with high-grade pleomorphic liposarcoma in the retroperitoneal area (confirmed with a biopsy and detected in a CT scan). There're 2 big masses, one 9x12x14.5 and 8x9cm in the right lower abdomen/upper pelvis area. The larger mass engulfs the right ilias artery and vein and is also compressing the other arteries and right kidney and also displacing the bowel loops.The diagnosis did come as a surprise to us since Dad is pretty active and hasn't had any major disease.

The local oncologist (we live in Southern California) that we visited offered chemo as the treatment option as he thought both surgery and radiation would be too intrusive and complicated at this stage. We also visited the sarcoma specialists at UCLA, City of Hope and Cedar Sinai to get a second opinion and all concur that surgery was not an option because of the way the blood vessels are engulfed by the tumor and instead recommended a combo of chemo + radiation to get the tumor to a more manageable size. We're getting a second biopsy done to reconfirm the type of sarcoma.

In any case, it looks like we're stuck with getting chemo/radiation in an effort to shrink the tumor. From all the research I was doing online, looks like liposarcoma is not too responsive to chemo. Also found some alternative treatment options like wheatgrass juice and Tibetan medicine. So just wanted to know what different experiences people had with each treatment option and alsowhat to expect in terms of side effects/behavioral changes? Dad is keeping up well so far. Another complication is that he has DVT (blood clot) in his right leg so he can barely walk and is currently on pain medication, blood thinner (warfarin) and laxatives (for the constipation).

ironman008
Posts: 2
Joined: Aug 2010

Nevdal,

I am a 47 year-old healthy male. I was just diagnosed with a retroperitoneal liposarcoma. I was at Memorial Sloan Kettering last week for evaluation. They recommend radiation therapy followed by agressive surgery. I am going for a second opinion at UCLA and City of Hope. Who did you see at these two hospitals?

No one I've spoken with yet has suggested a biopsy to determine the tumor grade and type. Were they able to do that with your father?

Hopefully you'll stay on the discussion boards or email me back.

Thank you.

Michael -

Kelvin_K
Posts: 6
Joined: Jan 2011

I have just now found this site (Jan 2011). At age 40 I was diagnosed with Pleomorphic Liposarcoma in my right knee in 1999. I had a somewhat radical surgery (Limb Salvage Resection) at Vanderbilt University Hospital by Herbert Schwartz(Nashville TN) followed by 35 radiation treatments. Leg looks goofy but works well. I HIGHLY recommend Dr Schwartz, and apparently others do too as I met PLENTY of patients from all over the US during my office visits.

I will be glad to share my experiences to those that it may help.

FYI: Back in the 1999-2000 time frame I got only ONE hit after a Google search on the term "Pleomorphic Liposarcoma" and that was an advertisement for Shark Oil.

DeniceH's picture
DeniceH
Posts: 9
Joined: Sep 2009

Hi Kelvin,

I'm so glad to hear from someone who's been a survivor for so long! I was only able to get one response to my query to Pleomorphic Liposarcoma when I started researching when I was diagnosed in May, 2009 so it hasn't come that much further in being explored. Most likely this is due to the fact that it is such a rare cancer.

Are you still being followed closely by your oncologist? How often do you have to go in for MRI's and CT scans? I go in every 3 months for lung scans and every six months they do lung scan and a scan of the leg where the tumor was removed. So far, so good!

I continue to check this site periodically in case someone new has joined and has questions as there isn't much information out and no support system other than these boards that I've found.

I wish you continued health and forever years of cancer-free-ness!

Santi Jain
Posts: 6
Joined: Feb 2012

Hello there,

My father just had a surgery for a malignant tumor which doctors say is Pleomorphic Liposarcoma. Below is the Biopsy report, I do not know what it is and what I need to do now. I consulted two doctors, and they have two different views. Can you please advise and help.

HISPATHOLOGY ( BIOPSY REPORT )

CLINICAL DETAILS PROVIDED
Right Adrenal Spindle cell tumor

SPECIMEN
Right adrenal mass

GROSS FINDINGS
Received modular mass, weigh 1.6kg measuring 22*14*12cm . External surface is smooth and congested. Cut surface yellowish tissue with areas of hemorrhage. Adrenal gland identified at one pole.

MICROSCOPIC FINDING
Sections studied from various levels show a highly cellular lesion composed of spindle shaped cells with elongated vesicular nuclei, moderate nuclear pleomorphism. Frequent mitotic figures are seen 12-14/10. There are scattered giant cells in a myxoid background. Tumor is well circumscribed. Areas of necrosis are seen.

IMPRESSION
High Grade Sarcoma
Features are suggestive of Pleomorphic Liposarcoma.

Eileen1
Posts: 1
Joined: Apr 2012

Hi DeniceH and Kelvin,

I was diagnosed in September 2010 with a tumour in my upper left thigh. Five weeks of radiation, then the tumour was removed in January 2011. I was recovering well, (although my leg would give out while walking at times) and returned part-time to work in April 2011. At the beginning of May, while driving to work, I experienced a pain in my chest that I thought was due to indigestion. Two days later, found out that I had a collapsed lung, then found out that it happened due to metastases to lung (and liver). One more surgery later, then chemotherapy started July 2011. Three rounds of chemo later and I'm still here, still kicking .... I am grateful that almost 2 years later, with encouragement and setbacks, I am able to see that there are other survivors like myself. Keep looking ahead, keep staying hopeful. I wish all of you continued health and years of cancer-free-ness as well!!

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