We have come a long way fighting cancer in this country. Survival rates are better, options are better, hope is greater...for many cancers...although not for all. But if you honestly evaluate the situation, while hope exists where it may not have before...fighting the disease is usually about navigating through a long list of scary choices...none of which really feel like choices you would want to make. It becomes about beating the beast, whatever it takes. But many times, what is takes, while it leaves you with a life...and that is a huge blessing...that life is almost always one that looks very different than the life you had before cancer.
Osteosarcoma is no different. While the options, plan of attack, and instances of survival have grown tremendously...the choices are still less than ideal and sometimes seem to border on insanity. It feels particularly difficult because this disease effects a number of children...and is this really the life we want to give back to these kids? After they've already endured the horrors of chemotherapy, of missing out on their life for months? There is much to be done in the area of fund-raising and research because while it is significantly better than it was 30 years ago, it seems to me as a mother of a child with this disease...that there is still a long way to go. (I thought our family's cause was going to be adoption...but I feel a new fire that might be growing in my soul...we shall see where God leads us...).
The current protocol for osteosarcoma currently is 10 weeks of chemotherapy, then surgery to remove the tumor and then 6 months or more of additional chemotherapy based on tumor necrosis at the time of surgery. The chemo prior to surgery is done to kill as much of the tumor as possible in an effort to minimize the risk that live cancer cells may break off and spread to other parts of the body during surgery. There can also be a small amount of tumor retraction once the cells die. The chemo after the surgery is done because there may be mets that are not visible and so every effort must be made to rid the body of any cancer cells that may not have shown up on scans. The chemotherapy has proved hugely beneficial to the survival of patients with osteosarcoma, as it is a cancer that can respond well to these types of drugs, but that is only one part of the puzzle.
As I mentioned above, a surgery piece must also be included. For the best chance at a long and healthy life, these tumors must come out. Period. There is no way around it. To remove a tumor from a bone is dependent on a number of things. How large is the tumor? Where is the tumor located? Are there joints involved? Is there soft tissue involvement? What must be done for clear margins to be achieved? Is the patient fully grown or is there much growth potential left? What is the desired activity level of the patient once the cancer is gone? This certainly isn't an exhaustive list, but these are just some of the things that must be considered. For now, we will keep Bailey's specifics out of it, and just stick to generalities. I will post more about where we are headed in the weeks to come. The surgical options are difficult. People keep asking us if we are getting additional opinions and we are, but I assure you, that these are standard. I am grateful that we have choices, but as a mother, it is difficult to look at your child and present these options. This is the ugly truth of osteosarcoma:
1) Amputation - 30 years ago, this was the only option and with no chemo, most died anyway. Fortunately, we live now and not then, and the chemo provides a much better opportunity for success. With amputation, you simply go to where there is a clear margin, and amputate there...based on where the tumor is. A number of osteosarcomas occur near the knee...so many times an amputation would be an above the knee amputation.
Pros - you can achieve very good mobility with a high-tech prosthesis, high functionality with minimal limitations
Cons - depends on location of the amputation, below the knee is much better functioning than above the knee, loss of normal weight bearing structure can cause other orthopedic issues (i.e. the thigh is not meant to bear weight, so hip problems can result, spurs, etc.), phantom pains can a serious and life-long issue requiring pain meds, etc.
2) Limb-Salvage - Touted as one of the great developments of recent years, although based on function alone - this point could be debated. Depending on the tumor, the area is removed to give safe margins and the missing bone is replaced...with a graft if the area is small (very unusual to have just a graft alone, areas are usually too large and it would be unstable) or with an artificial joint, titanium femur, etc. The idea behind this is that (other than a rather large scar) the leg will look "normal" and function normally for basic movement such as walking (after a period of physical therapy).
Pros - more cosmetically appealing, there are now expandable prosthesis that allow for growth in children
Cons - does not grow (unless you have expandable), leg length discrepancy, high possibility of infection, joint degeneration, high risk of fracture, may require bracing, multiple surgeries, will need to be redone when child is fully grown, limited physical activity for the duration of the patient's life, no high impact or contact sports due to potential loosening or fracture of prosthesis
3) Rotationplasty - The most radical looking of the options, but also allows for the most functionality long-term.The entire leg section of the tumored bone is removed, the foot is then rotated 180 degrees and the remaining tibia is attached to the remaining femur...thus allowing the ankle to function as a knee. (If you want to get technical, rotationplasty is considered an amputation...but I have it listed separately here.)
(www.rotationplasty.com)
Pros - ankle is made for weight-bearing, allows for full function as a below the knee amputee with no limits on activity (once fitted and accustomed to prosthesis), no phantom pains
Cons - unusual, could be cosmetically displeasing as foot is reversed, rehabilitation can be a long process
How do you like those choices? Although there are technically three options: 1) Amputation 2) Limb-Salvage or 3) Rotationplasty, it basically comes down to a decision between a leg that looks like what we expect a leg to look like or a leg that will allow you to live with no limitations...you cannot have both.
This information will be shocking to some. It was to us initially, but we began understanding and researching this piece shortly after Bailey's diagnosis, so we have had some time to process. It was as if there were two levels of devastation. Initially, the utter shock and disbelief of a cancer diagnosis and then again, as we realized that our active, athletic child was facing the loss of everything she loves. A totally different life on the other side of cancer. These are our choices and they are excruciating and cannot be made by anyone who does not have intimate knowledge of our child. They are beyond lousy options, but we have had some time to grieve and we are ready to fight to get this little girl her life back. We are currently researching and meeting with surgeons. Another huge piece of this is talking to kids and families who have been through it...so we are doing that as well...and their stories have been instrumental as we begin to develop some definitive views on next steps.
Please pray with us...for strength, wisdom and clarity as we make choices that no parent ever dreams of making. As I have mentioned before, we are well beyond ideal here. Based on what we have in front of us, we need to prayerfully consider the child God has created Bailey to be and the kind of life that will be acceptable vs. the life that will not be...to her.
It is an agonizing choice.
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