Chordoma Foundation

Guidelines for sacral and mobile spine isolated recurrence

The treatment recommendations you find here were developed by the Chordoma Global Consensus Group – a multidisciplinary, international group of more than 60 doctors who specialize in caring for chordoma patients. The Chordoma Foundation and the European Society for Medical Oncology brought this group together to define the recommendations for treating chordoma based on all available medical and scientific evidence. The resulting consensus guidelines were published in the medical journal Annals of Oncology in June 2017. The full paper can be accessed here.

You can also find these recommendations in our Expert Recommendations for the Treatment of Recurrent Chordoma booklet.

Download or request a hard copy of the booklet »

 

A series of flowcharts helps to illustrate the treatment guidelines and walk you through the suggested tests, treatment options, and follow-up steps recommended for different recurrence scenarios. You’ll find the flowcharts and supporting information throughout the page below. You can also download the collection of flowcharts as a PDF.

 

For sacral and mobile spine (cervical, thoracic, and lumbar) recurrences, your doctors should first consider:

  • whether your tumor ruptured during previous surgery or was taken out in more than one piece
  • what radiation treatments you have received

This will help determine whether surgery alone, surgery plus radiation, or radiation alone is the best option for you. It is important for a radiation oncologist who has experience with chordoma to examine any past radiation treatment plans in relation to your current tumor growth to make this determination.

 

The following flow chart illustrates the possible options for a mobile spine or sacral isolated recurrence, as discussed in the sections below.

Expert Recommendations Recurrent Chordoma Flow Charts

View/download flow chart as a PDF »

 

If your original tumor was completely removed in one piece (en-bloc resection) and:

You have not had radiation, surgery to remove the entire tumor should be considered first.

  • If en-bloc resection is possible and the risks of side effects are acceptable, surgery is recommended. High-dose radiation may also be recommended following surgery.
  • If en-bloc resection is not possible or the risks of side effects are not acceptable, high-dose radiation alone should be considered.
    • If high-dose radiation is not possible, other treatment options should be considered.
You have had radiation, your doctors will need to determine whether you can have further high-dose radiation.

  • If high-dose radiation is possible, this is the recommended treatment. Surgery to remove as much tumor as possible should also be considered.
  • If high-dose radiation is not possible, other treatment options should be considered.

 

The following flow chart illustrates the possible options for a mobile spine or sacral isolated recurrence, as discussed in the sections below.

Expert Recommendations for Recurrent Chordoma Flow Chart

View/download flow chart as a PDF »

 

If your original tumor ruptured during previous surgery or was taken out in more than one piece (not en-bloc), your doctors will need to determine whether you can receive high-dose radiation.

  • If high-dose radiation is possible, the recommended treatment is high-dose radiation alone, without surgery.
  • If high-dose radiation is not possible, other treatment options should be considered.

 

Read more about options to consider if high-dose radiation is not possible »

A comprehensive palliative and supportive care plan should be part of your overall treatment plan, to help address any side effects or other quality of life concerns and provide support for you and your family members.

Read more about palliative and supportive care »

If your doctors are unsure of the best treatment option for you, a period of observation is recommended if your disease is stable, your tumor is slow-growing, or you do not have noticeable symptoms.

Goals of surgery for sacral and mobile spine isolated recurrence

In general, the goal of surgery for sacral or mobile spine tumors is to remove the tumor in one piece (en-bloc resection) with surgical margins of at least 1mm of healthy tissue. It is very important that all attempts are made to limit the risk of rupturing the tumor during surgery, which can cause tumor cells to spread.

Recurrences within the chest cavity, abdomen, and pelvis cannot typically be removed in one piece. The goal of surgery in these cases is to remove as much of the tumor as possible to increase the effectiveness of later radiation.

 

 

The information on this page was developed by the Chordoma Foundation in consultation with members of the Chordoma Global Consensus Group. We would like to thank the members of the Chordoma Global Consensus Group for providing their expertise in the development of the original consensus guidelines and their review of this educational content.


The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your loved one’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. 

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