When a child is diagnosed with Osteosarcoma, the amount of decisions a family will have to make can be overwhelming. Treatment can look different for every patient, but MIB works to make the decision making less daunting for everyone going through this journey.
Treatment is not one size fits all and changes occur when the established protocol does not work well for a patient or a specific situation. Your medical team will discuss their thoughts and recommendations for treatment. Ask questions, and more questions. Keep a notebook with your questions and the answers that you can refer to. There is a science, but also an art, to treating osteosarcoma; modification to standard treatment will be made due to location of tumor(s), size of tumor(s), age and health of patient, etc. You need to find a team you believe is the right fit for your family and the patient; one you can understand and trust in their treatment recommendations.
Amanda from New Jersey says, “Pain is temporary and it’s what is necessary to get that disgusting monster out of us. You WILL get through this!”
There are many different treatment journeys, but there are several main types of treatment.
Surgery is undertaken to remove all signs of disease possible from a patient’s body. The rule of thumb in osteosarcoma is that if a tumor can be removed it should be; as survival rates rise dramatically with complete removal of all disease. Occasionally a site of disease will make it unresectable (cannot be removed via surgery due to location or size) then a different approach and protocol will often be considered.
The surgical decision can be very overwhelming. Some families (and/ or caregivers) have benefited by meeting multiple surgical teams to get various opinions which help them to decide what is best for their patient. Some considerations you may want to discuss:
1. What is the chance of recurrence at the surgical site?
2. What post-surgical mobility limitations will there be?
3. What will be required for physical therapy and regaining mobility?
4. What life-long issues or future surgeries can be expected?
5. What lifelong limitations can be expected?
Chemotherapy prior to surgery is called Neoadjuvant Therapy. The goals of neoadjuvant therapy are to:
1. Start killing the osteosarcoma, and any osteosarcoma cells floating around in the blood quickly.
2. Utilize data from the tumor after two rounds of chemo to determine the percent of cells that have died due to the therapy - this is called the “rate of necrosis”.
3. Give time to plan surgery. Patients and families need time to consider options available to them.
4. Potentially shrink the tumor (if it has a soft tissue component) to be able to get better margins during the surgical procedure.
5. Chemotherapy can many times bring pain relief from the tumor.
Chemotherapy after surgery is called adjuvant chemotherapy. This chemotherapy is used to continue killing any osteosarcoma cells that may be left in the body after surgery. These cells could remain due to poor surgical margins (cancerous cells on the edge of the surgical site that still remain). More commonly, there are cancerous cells moving through the blood to other areas of the body. These cancerous cells get into the blood stream via the blood vessels that feed the tumor.The adjuvant chemotherapy is used to kill these cells and prevent any further metastases from taking hold in another bone or the lungs. Since the addition of adjuvant chemotherapy to osteosarcoma treatment, the relapse rates have decreased.
Lori from Texas suggests, “Do not plan. Take one day at a time... I tried sending out a calendar of my daughter’s chemo schedule. That was revised every day until I gave up. Get duplicates of toiletries and necessities and just keep emergency bags packed. That will also relieve stress during an (inevitable) crisis. Again, connect with those who have gone before. Their help is invaluable!”
You and your family should be comfortable with your team. Your team should be open to you seeking a second opinion. Most teams will give opinions of doctors and facilities with expertise in cases like yours. Sarcoma centers often work with other institutions to provide the best care for patients at other facilities, so you can pursue care at a local facility while getting input from a sarcoma center. Always make sure you are confident in your team and the care they are providing. Since cancer treatment is so challenging, it is normal for your confidence to ebb and weigh, so be sure to continue to ask questions and get your concerns heard. Open communication will help bridge any gaps or misunderstandings. There is no time-frame for choosing another team. You can change teams at any time. Never feel stuck, you must advocate and get the best care you can.
Internet communities and other types of support resources can be helpful when determining the right treatment decisions, but remember that they are not medical professionals with details about your specific case and therefore their understanding may be incomplete or inaccurate. Find a medical team you trust so that you can get your questions and concerns answered by a professional that knows the specifics of your case.
The MIB Ambassador Agents program connects patients and caregivers to osteosarcoma survivors. Ambassador Agents are dedicated to providing support and hope. As individuals who have walked the osteosarcoma path, we are here to understand and hear you, you are not alone.
Dad from California says, “I found having a person to talk to about challenges as a caregiver was key. I, like most, had good friends and family; but sometimes it was hard to discuss the fears and confusion of being a parent of an osteosarcoma patient with someone so close. I found it helpful to have a support group and in particular at least one other parent to confide in. It is still difficult but sometimes it is easier to unload to someone who isn’t emotionally involved in your own family but understands the difficulties and treatments associated with osteosarcoma. I was fortunate enough to have two dads who shared in the difficulties of being a patient’s father. We could share fears or concerns about treatments or tests. We knew we weren’t shocking each other so we could openly share feelings, fears, and tears in a safe environment.”
*No two osteosarcoma patients are the same, therefore there is no substitute for the expert care of your medical team. This is not meant to replace the guidance of your oncology team. It is meant to share resources, information and support.