First, a bit about me... Four years ago today in 2015, I was diagnosed with myxoid/round cell liposarcoma in my left thigh wrapped around my sciatic nerve, invading my muscle. Mine was high grade with 25% round cell, measuring 25 x 13 x 8.7 cm. I had 72 hours of chemo & 10 rounds of radiation, followed six weeks later by limb sparing surgery & five months of physiotherapy. My post surgery battle scar runs from my butt to the back of my knee, but at least I still have my leg & my life, so it could be worse! I am by no means a medical expert. The information below is simply a compilation of what I’ve learned from my own experience, my oncologist and the online liposarcoma community over the past four years.
If you haven’t already, please join the two main liposarcoma FB groups, where you will find more specific info for the myxoid liposarcoma subtypes.
There is also a Friends & Family Fighting Myxoid Liposarcoma FB group, but it‘s less active, since most of us are in the other two groups.
Please keep in mind, liposarcoma is one of over 50 types of sarcoma, and there are five subtypes of liposarcoma divided into three categories:
Each subtype responds differently to treatment, so it’s important to only compare yourself to others with the same subtype. Also please note, myxofibrosarcoma & myxoid chondrosarcoma are NOT related to any of the myxoid liposarcoma subtypes, so do NOT compare yourself to these sarcomas.
Myxoid & WD liposarcoma are low grade (less likely to spread), whereas MRCLS, DD & pleomorphic liposarcoma are all high grade (more likely to recur or spread). Most MLS & MRCLS metastasis & local recurrences occur within five years of surgery, with a smaller cluster occurring at the 7-10 year mark. However, I've even come across survivors whose distant mets occurred 11 years after surgery. Consequently, the sarcoma community as a whole tends to use the term NED (no evidence of disease) rather than "cancer free", as it's quite possible the cancer is still present but not yet visible on scans. In fact, this term is often used on our scan reports themselves. Roughly 30% of cases with the myxoid subtypes lead to recurrence or distant metastasis.
MLS & MRCLS are said to be more responsive to radiation and chemo compared to other liposarcomas. Both are treated with radiation & surgery, however, chemo is often reserved for the high grade MRCLS variant & those with larger tumours, so it’s important to know your round cell percentage, which can be found on your pathology report. Five percent or greater is considered high grade & more aggressive, whereas less than five percent is classified as low grade.
Although there are always exceptions (sarcomas can occur anywhere in the body), Myxoid, myxoid/round cell & pleomorphic often originate in the extremities (limbs), whereas WD & DD often start in the abdomen. If you’ve been diagnosed with myxoid in the abdomen & there’s no sign of it elsewhere, you may want to seek a second opinion, as it’s possible it may instead be WD or DD liposarcoma.
Unlike other cancers where you're considered to be in remission after five years, liposarcoma patients should be monitored for life, but especially for the first 10 years following surgery. Typically in the US & Canada, the first two to three years consist of CT scans of chest/abdomen/pelvis or chest x-rays every three to four months, sometimes alternating to reduce radiation exposure. At the two or three-year mark, this frequency often decreases to every six months, and then from five years on, scans are yearly up until at least the 10 year mark. An MRI of original site for extremity liposarcoma survivors is also recommended, but frequency & scan types vary depending on where you live. In the US, MRIs tend to be ordered every three months For the first 2 to 3 years, every six months till the five year mark & annually after that. However, in countries with public healthcare systems, such as Canada, UK & Australia, scan frequency varies due to cost. In fact, some patients have had to fight just to get MRI scans at all. With MLS & MRCLS, a spinal MRI is also recommended every one or two years to check for spinal mets, especially for those with myxoid/round cell. Update: In the UK, CT scans tend to be reserved for more high risk cases, with lower risk individuals getting chest x-rays instead. Many thanks to Kate & Rachel for the UK info! CT scans are more effective at detecting smaller mets, however, they result in more radiation exposure. I've noticed the US seems to order the highest amount of CTs compared to other countries. Here in Canada at my highest frequency, even as high risk, I was getting chest x-rays every four months substituted once annually with a CT scan in order to reduce radiation exposure. I've always had annual MRIs of my thigh but didn't start getting spinal MRIs until about two years in once it became known that MRIs are more effective than bone scans at detecting bone mets.
When MLS or MRCLS is suspected in the limbs, a core needle biopsy is used to confirm subtype & grade. This is important for determining the treatment plan, especially if receiving chemo or radiation before surgery. According to the National Cancer Institute in the US, contrary to popular belief, biopsy seeding is a myth. However, if the tumour is smaller than 5cm or radiation &/or chemo are going to be done after surgery, sometimes a biopsy is skipped in favour of a post-surgery pathology report. The problem with this, however, is the round cell percentage often can't be determined after tumour removal due to tumour necrosis from pre-surgery radiation treatment.
Please know, you did not cause this cancer. To date, sarcoma experts have not found any link between sarcomas & diet, weight, exercise, lifestyle or even family history. In fact, many sarcoma patients live healthy lifestyles & there are even several professional athletes amongst our lumpy alumni. MLS & MRCLS tend to be diagnosed in younger adults in their 30s, 40s & 50s, and there are even rare instances of children getting these subtypes. According to the Canadian Cancer Society, only 45% of cancers are preventable, which means the other 55% aren't, and liposarcoma is amongst that 55%. To quote my oncologist, it was just bad luck.
Last but not least, it's important to be seen by a sarcoma specialist, as most general oncologists have never even seen or treated a case of sarcoma. According to many research studies, when surgeries are not performed by sarcoma specialists, likelihood of local recurrence & distant metastasis significantly increases. There are many liposarcoma patients whose tumours were misdiagnosed as benign lipomas, and as a result were removed with inadequate margins the first time around, resulting in the need for a second surgery in an attempt to reduce likelihood of early recurrence and/or metastasis. If not possible to attend a high-volume sarcoma centre, your oncologist should in the very least closely consult with an experienced sarcoma specialist at a large cancer centre. Be sure to ask your medical team lots of questions, and don’t be afraid to seek a second opinion . It could save your life.
Many thanks to those on the Liposarcoma Survivors FB group for all your support & wealth of knowledge over the past four years. I'd also like to thank the sarcoma specialists who donate their free time to answer questions on the Q&A group, and my own medical team for saving my leg & my life. I'll find out later this month if my luck continues. For those whose journeys ended far too soon, I dedicate this post in your honour. These are just a few of the fallen warriors who've helped me in some form along the way - Jeff L., Amy K., Teresa B., Kathy H. & Matthew S. Also, big hugs & huge thanks to my fellow survivors Erica, Ruth Mc. & Elisa, as well as Dr. Tseng, who everyone wishes was on their medical team, including me! :)
Many thanks to those on the Liposarcoma Survivors FB group for all your support & wealth of knowledge over the past four years. I'd also like to thank the sarcoma specialists who donate their free time to answer questions on the Q&A group, and my own medical team for saving my leg & my life. I'll find out later this month if my luck continues. For those whose journeys ended far too soon, I dedicate this post in your honour. These are just a few of the fallen warriors who've helped me in some form along the way - Jeff L., Amy K., Teresa B., Kathy H. & Matthew S. Also, big hugs & huge thanks to my fellow survivors Erica, Ruth Mc. & Elisa, as well as Dr. Tseng, who everyone wishes was on their medical team, including me! :)
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