What’s New in Liposarcoma?

By David Levine,

Thursday, June 18, 2015

Close-up of medical oncologist Mark Dickson attending a presentation.
Summary

In this Q&A, medical oncologist Mark Dickson discusses how people with liposarcoma are cared for at Memorial Sloan Kettering, what’s new in diagnosis and treatment, and the research he and his colleagues are conducting to improve patients’ treatment options.

Highlights
  • Liposarcoma is a rare cancer of the fat tissue.
  • MSK doctors have a lot of experience diagnosing and treating it.
  • They are conducting several clinical trials of new treatments.
  • Genomic testing is now making personalized treatment possible.

Liposarcomas are tumors that arise in the body’s fat tissue. They are relatively rare, affecting only about 2,000 people each year in the United States. But it’s not an unusual disease at Memorial Sloan Kettering: Our doctors and researchers specialize in this and about 50 other types of soft tissue sarcoma.

Mark Dickson is a medical oncologist who specializes in liposarcoma as well as other sarcomas of the soft tissue and bone and Kaposi sarcoma. In a recent interview, Dr. Dickson discussed the challenges of treating liposarcoma and the research he is doing to improve the lives of people living with the disease by finding treatments that are more effective and less toxic.

How are liposarcomas detected and diagnosed?

Symptoms vary depending on the location of the tumor.  For patient with a tumor in the abdomen, a common symptom is weight gain. A patient can gain ten to 20 pounds because some tumors can be very large [between 30 and 50 centimeters in diameter]. Patients who have tumors on their thighs or arms usually notice them right away. But a tumor in the abdomen might not be diagnosed as quickly since people often think their bellies have grown bigger due to normal weight gain. 

Doctors use imaging tests, typically MRIs, to determine how far the disease has spread and to aid in assessing the stage of the tumor. The next step is a biopsy. Since sarcomas are rare, it is important that a surgeon or radiologist who is highly experienced with sarcomas does the biopsy.

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Why are liposarcomas so difficult to treat?

Sarcomas are rare, and liposarcomas even rarer. The average oncologist might see one sarcoma in a year. That’s why patients are best off coming to a center such as MSK, where sarcomas are routine, not exceptional.

There are four types of liposarcoma. The most common is well-differentiated liposarcoma, low-grade tumors whose cells look like normal fat cells and grow slowly. Myxoid/round cell liposarcomas are intermediate to high-grade tumors, with the round cell being the high-grade form. Pleomorphic liposarcoma is the rarest but sometimes is a very aggressive disease type. And a dedifferentiated liposarcoma is a high-grade tumor that occurs when a lower-grade tumor changes and creates new high-grade cells.

Patients with well-differentiated liposarcoma can survive for decades, but recurrence is a problem. Simple well-differentiated tumors can be removed surgically and the prognosis is often good, but recurrent tumors are more challenging because the cancer can spread to other parts of the body and surgery may not be an option. Radiation has to be used sparingly to avoid side effects, and chemotherapy does not work well for many liposarcomas.

The five-year survival rate for patients with a high-grade liposarcoma is less than 50 percent. That’s why we’re seeking better treatments.

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What follow-up do patients need after they’re done with active treatment?

Because recurrence can occur from months to decades after the initial diagnosis, people who have been treated for liposarcoma need to be monitored for the rest of their lives. Patients will have follow-up testing — which typically consists of a physical exam and imaging tests to detect metastasis — on a schedule determined by their physician.

Patients are best off coming to a center such as MSK, where sarcomas are routine.
Mark A. Dickson
Mark A. Dickson Medical oncologist
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Are there any clinical trials for liposarcoma drugs taking place?

There are several clinical trials being conducted at MSK that are centered on well-differentiated and dedifferentiated liposarcomas.

We are testing drugs that will turn off certain genes that become overexpressed in liposarcomas, including the genes CDK4 and MDM2. Ideally we will find a drug as effective as imatinib (Gleevec™), which was developed to target the cancer cells that cause chronic myelogenous leukemia and blocks the production of the abnormal protein that causes cancer. Gleevec is also very effective against some gastrointestinal stromal tumors.

We are seeing particularly promising results with the CDK4-targeting drug PD0332991 (palbociclib). To date, 90 patients have taken part in a phase II trial that looks at the drug’s efficacy. In 2013, we published a preliminary study in the Journal of Clinical Oncology that found that 70 percent of the 30 patients given PD0332991 for 12 weeks did not have their disease progress during that time. This was a higher percentage than expected. In addition, some patients had significant shrinking of their tumors.

Trials for drugs that can inhibit the overexpression of MDM2 are just under way. We are doing phase I trials with the goal of seeing whether a drug is safe to use — and hopefully showing some efficacy. One of the trials involves SAR405838, an investigational anticancer drug. The purpose of this study is to find the highest dose of SAR405838 that can be given safely in patients with liposarcoma and other advanced cancers that have either continued to grow despite standard therapy or for which no standard treatments exist.

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What other research efforts aimed at liposarcoma are happening at MSK?

Among the challenges of treating sarcomas is that they are not one disease but have different subtypes, so there is a lot of variety between different people’s tumors. For comparison, in melanoma, you’ll find a common type of mutations in the gene BRAF that can be targeted with a drug in approximately 60 percent of patients. We will not find these high percentages in sarcomas. However, even finding a clinically relevant mutation present in a smaller number of patients is helpful. I believe that genomic research will be key in helping patients with liposarcomas.

We are utilizing a test known as MSK-IMPACT™, a targeted tumor-sequencing test that can detect gene mutations and other critical genetic aberrations in both rare and common cancers. The goal is to find aberrations that make cancers vulnerable to particular drugs and to match individual patients with available therapies or clinical trials that will most benefit them. To date, we have done sequencing on about 300 soft tissue sarcomas. 

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Comments

I am a current patient at MSKCC, DX'ed with Metastatic Breast Cancer. I found a lump in my abdomen recently and was told not to be concerned that was only a lipoma but what are the chances that having one cancer I could end up with another in the soft tissue? It was recommended that I have an MRI for further diagnostics but no one seems concerned. Should I push for additional testing to be sure it's just 'nothing'?

Susan, thank you for reaching out. We appreciate your concern, but unfortunately we are unable to answer personal medical questions such as this on this blog. We suggest you express your concerns about this lump to the doctors on your treatment team, who are familiar with all the aspects of your case.

Mybhusband was diagnosed with liposarcoma , itvsarcoma was both well differentiated and de differentiated. Hevwas operated on april 1 2013. Last checkup was June 19th the doc said it was
negative. He was operated on at sloan. This is his second time with sarcoma 1st was march 2009. Is it most llikely to reoccurr?

This is something you should discuss with your husband's healthcare team. We are not able to answer questions like this on our blog. Thank you for your comment.

I would like to donate to this research and treatment. Can you please provide a link to the best charity or donation site? Thank you

My daughter has libosarcoma and crohns. Has been in the hospital in and out for 8 months. They say there is not anymore they can do. Help

My wife is being treated for liposarcoma at Georgetown University Hospital in DC. The chemotherapy doesn't seem to be reducing the tumor. How can we qualify for genomics therapy at MSK, can you help us?

Harold, thank you for reaching out. If your wife would like to make an appointment with a Memorial Sloan Kettering physician for a consultation, please call our Physician Referral Service at
800-­525­-2225 or go to http://www.mskcc.org/cancer­care/appointment. They will be able to answer your questions.

My father had liposcaroma, my brother has it now and is in stage four. I was told it is rare and not hereditary. I am certainly now concerned about myself. I cannot afford to come to Sloan in New York (I'm in Chicago). Any suggestions?

Thank you for reaching out. Certain inherited medical conditions, such as neurofibromatosis, Gardner’s syndrome, Li-Fraumeni syndrome, and retinoblastoma, can make a person more susceptible to developing soft tissue sarcoma, including liposarcoma. But most of the time, there’s no clear reason why this cancer develops. We suggest you discuss your concerns with your personal physician.

My husband was diagnosed with liposarcoma 4 years ago. He has had surgery and radiation and has been said to be doing well. This morning he informed me that he has a lump in his left axilla. It is about 2 cm by 1 cm. My concern is metastasis to the lymphatic system. Does liposarcoma metastasize to the lymph system?

It's possible for liposarcoma to spread to the lymph nodes but it's not very common. We recommend your husband discuss any concerns that he has with his healthcare team. Thank you for your comment.

Patients with large retroperitoneal Liposarcoma can live decades ?

It's impossible to predict how long anyone will live with a particular disease. There are many variables, and every patient responds to treatment differently, however there are general survival statistics available. The American Cancer Society offers information about survival by stage of soft tissue sarcoma here: http://www.cancer.org/cancer/sarcoma-adultsofttissuecancer/detailedguid…

We hope this is helpful and appreciate you reaching out.

I have been treated over the last two and 1/2 years for de-differentiated liposarcoma located in my abdomen. I have been treated with TH302 and Gemzar/ Taxotere. Recent CT shows lungs clear but now have 4 tumors. Looking for new treatments! Do you have any clinical trials with any of the new drugs in your article available?? Palbociclib? SAR405838?

I was recently diagnosed with Lipsarcoma. I had s soft tissue lump below my ankle. An MRI showed a tumor from the inside middle of my left leg down thru my ankle and in my foot. I was told it was benign. I am scheduled to return in six months to see how much it has grown. would you advise getting another opinion? Thank you

If you would like to get a second opinion at MSK, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. In addition, a liposarcoma is generally not benign (a lipoma is benign) so we recommend you ask your doctor to clarify your diagnosis. Thank you for your comment.

Hello. I am from Denmark.
How can my sister come to you for a second oppinion? She has liposarcoma, and the danish doctors is not used to this disease. We need your help.

Regitze, we are sorry to hear about your sister's diagnosis. Our doctors have a great deal of experience and expertise in treating liposarcoma. If she would like to come to Memorial Sloan ­Kettering or have her records reviewed, she can contact our International Center by calling 1-­212-­639­-4900 or going to http://www.mskcc.org/cancer­care/international­patients. The email address is international@mskcc.org.

I have had multiple lumps under my skin for around 5 years now. Originally one popped up under my skin above my top lip. It feels like a tiny marble. When evaluated I was told it was a cyst. A year later 4 lumps popped up on my back. After an exam I was told lipomas. 2 more years have passed and I've had 3 on each thigh pop up, 3 on my forearm one on my stomach and one in the small of my back.. I had one last physician feel them about a month ago and he said they're all either lipomas or cysts.. Is this characteristic of liposarcoma? This has spanned over a period of about 8 years..

Dear Sam, liposarcoma arises in the fatty tissue (also called adipose tissue) of the body. Unlike many cancers, soft tissue sarcoma often does not cause symptoms in the early stages, because it occurs in soft (usually elastic) tissue that is easily pushed out of the way by the growing tissue. The first symptom you may notice is a painless lump. Sometimes, the tumor might cause pain, soreness, or difficulty breathing if it presses on nerves muscles, or blood vessels. Many people notice a sarcoma only after an unrelated injury draws attention to that part of the body. Physical exams and imaging tests are helpful diagnostic tools, but the gold standard for diagnosing soft tissue sarcoma in with a biopsy.

Thank you for reaching out to us.

I have a retroperitoneal dedifferentiated liposarcoma, had several surgeries since 2013, and illness keeps recurring locally at intervals of 3-4 months. I will probably be proposed treatment with doxorubicin, but I understand is not very effective. What other first and second line treatments are suggested at MSK? And exactly, what is the 5 year overall survival for this illness?

Roberto, because everyone's case is different, we are not able to suggest a specific line of treatment for you on our blog. If you'd like to arrange for a consultation at MSK, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment.

18 years ago I had a pleomorphic liposarcoma removed from my upper right arm. I went through radiation treatment for 6 weeks then follow up for 5 years at Seattle Cancer Care and was told after 5 years I had nothing to worry about and i didn't have to come back for any more check ups. Does this ever come back and metastasize to the lungs. I've been bothered by a chronic cough for the past 6 months.

If you have concerns about your health we recommend that you consult with your healthcare team. Thank you for your comment.

If an ultrasound of the area in question comes back as just subcantaneous fat would you still need an MRI to rule out a liposarcoma or would it show up on ultrasound ?

Growth on the arm was diagnosed as de-deferented high grade. It was removed by surgery. The pet ct did find low reaction there but nowhere else. However after the surgery within weeks it is possible to see and feel another growth not too far from the place where the surgery occurred. Even mri did not detect this new growth. Only an ultrasound. Questions are: why mri and pet ct did not find it? What can it be? Can the cancer grow so quickly within 2-3 weeks to about 1cm? What treatment should I consider to ensure or at least reduce chances this is not reoccurring in the future? Thanks

Dear Joe, we are sorry to hear about your diagnosis. It's best to follow up with your physician to discuss your specific concerns. If you would like to make an appointment for a consultation with one of our specialists you may call our Physician Referral Service at 800-225-2225. Thank you for reaching out to us.

My husband had a scrotum liposarcoma of 10cm, 2 months after surgery it came back to 9cm, and three weeks later he had metastasis in the lung. It is grade 3. Is it possible to live 3 years and which treatment would be the best ?

Dear Heidi, we are sorry to hear about your husband's diagnosis. Survivorship statistics are not reliable predictors of how long an individual will survive a particular cancer. Everyone responds to treatment differently and many people do better than expected. We recommend that you follow up with your husband's oncologist to discuss treatment options that would be appropriate for his particular circumstances. If you would like to make an appointment with one of our specialists for a consultation, please call our Physician Referral Service at 800-225-2225. Thank you for reaching out to us.

I have had what they said was a lipoma around my right Iliad crest? (I googled this so not sure if that is the right medical term) for a year now. Well I have only known of it for about a year. After having my baby I have had cold sweats and increased weight loss as well as progressive weakness. Does sarcoma cause these types of symptoms and should I get a second opinion on the mass on my lower back? I have a second one growing on the left now. Quite big and they are quite deep not just under the skin type of mass

Hi, this article helped me a lot. My dad was diagnosed with a well differetntiated liposarcoma. May i request a detailed explanation about it from you. Like, where did he get it, treatment after surgery etc. I am from the Philippines and we are currently fighting this battle.

are you saying lipomas are always cancer

Matthew, this article is not about lipomas, which are not cancerous and are usually harmless. However, there is a very small chance that a lump resembling a lipoma may actually be a form of cancer called liposarcoma. Liposarcomas — cancerous tumors in fatty tissues — grow rapidly, don't move under the skin and are usually painful. A biopsy and imaging tests are typically done if your doctor suspects liposarcoma. Thank you for your comment.

This is just a comment for those who face a liposarcoma diagnosis. My mother was diagnosed when I was 4 years old, and the doctors told my father it would take her life, and indeed it did. She finally succumbed to the cancer - 46 years later, at age 89.

Dear Dale, we are very sorry for your loss.

Is there any knowledge or study done on risk of lipoma turning malignant after being treated with ultrasonic cavitation. Is there anything that can trigger a lipoma to develop into a liposarcoma after being treated by ultrasonic cavitation treatment which is ideally used to break fat cells.

Kamal, we sent your questions to one of our sarcoma experts, Aimee Crago. Dr. Crago responded, "There is no known risk of benign lipomas transforming into liposarcomas. For patients who face this scenario, it is more likely that a low grade well-differentiated liposarcoma in the extremity was initially misdiagnosed as lipoma. This most often happens in older patients with tumors that are large or those that have abnormal imaging characteristics. Specialized soft tissue pathologists such as those at MSK have developed detailed tests to minimize the risk of misdiagnosis." Thank you for your comment.

My brother was diagnosed with myxoid liposarcoma a year ago, it is located at his pelvis, a byopsy was done, during the past 12 months he has received chemotherapy and radiation, the tumor has reduced its size significantly, around 70%, now the oncological surgeon says that the reduced tumor must be removed but, he also says, that there are some possible permanent side effects due to the surgical procedure, such as: incontinence, impotence, walking difficulty, etc. My brother is 44 years old and, as you can image, he is very concerned about these possible side effects. He is being treated in the USA by very good doctors but he would like to have a second opinion,, particullarly, if there is an alternative to surgery or a second surgical opinion. Thank you very much for your kind help. Best Regards.

We are sorry to hear about your brother's diagnosis. If he would like to make an appointment for a second opinion and a discussion of his treatment options, please ask him to call our Physician Referral Service at 800-225-2225. Thank you for reaching out to us.

My mother has abdominal well diffrence liposarcoma. Within 12 years, is five times surgery. But the doctor does not prescribe chemotherapy and radiotherapy. He says chemotherapy is ineffective and radiation leads to the adhesion of abdominal components.
I'm afraid of metastasis. Is it possible to treat of metastasis to the liver and lungs?
- I ask God that the doctor Dickson managed to make the drug the sooner. Are he and his coworkers are a prediction of drug development & marketing time?

Zahed, we're sorry to hear about your mother's diagnosis. There are a number of treatments in trials for liposarcoma at MSK and other centers, but it's too early to predict when any of these will be widely available. If your mother would like to come to MSK for a consultation she can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. If you're not in the NYC area, you might want to go to www.clinicaltrials.gov to find trials that are closer to where you live. Thank you for your comment.

Thank you for your reply to my earlier comment. I do not reside in US. If I do email you my MRI scans and reports. Would you be able to tell me if Ultrasonic Cavitation on it is possible on it and risks along with it? I do not reside in US hence can come to US only if our treatment gets finalised. Please guide me ..

Dear Kamal, patients from outside the US may contact our International Center to coordinate their care or arrange for a medical records review by one of our doctors. For more information about their services, please visit https://www.mskcc.org/experience/become-patient/international-patients. You may contact them directly via email at international@mskcc.org. Thank you for reaching out to us.

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