It was getting close to the end of the outpatient line on Friday afternoon. As I called for the next patient, a 17 yo teenage girl slowly got up off the waiting area bench and hobbled towards me down the outpatient hallway. Her mom walking on her side, trying to offer some support as she made my way into her exam room. I asked what was wrong and the girl said her leg has been swollen and hurting since July. Their attempts to go to another hospital resulted in a supply of medicine and delays to see a surgeon, so they came to us.
She gingerly made her way up to the exam table and I started to examine her leg. The firm hard mass I felt under my hands in the middle of her femur told me this wasn't good. The other hospital thought this was an infection of the bone, but after touching her leg I knew an infection of the bone would have been the best diagnosis we could hope for as I feared something far worse.
I feared that this young teenage girl, who was about to sit for her grade 10 exams next week, who seemed was very articulate, and had lots of hopes and dreams for her future, had cancer of her leg that might just shatter her dreams of tomorrow. I didn't say much, but I asked them to go get an xray of her femur. The xray confirmed my suspicions, showing an area of the bone that was very abnormal and was eaten away. This didn't look promising, and so I shared my concerns with Bill, not wanting to scare the family for no reason, but Bill too agreed this was bad.
Mom asked, "Is it good or bad?' "Bad, very bad," was my response. I explained as best I could and as strongly as I could what we thought was wrong with this girl. She started crying and her mom almost fell over in shock. I told them they were looking at surgery to amputate the leg, and even then there was no guarantee it would produce a cure, if the cancer had already spread. More tears, the mother asked if she could get the father. Dad came in and I tried to explain again that her daughter had cancer of her leg and was going to require surgery to cut it off in order to try and save her life. He kept saying, "It will be okay, it will be okay," trying to comfort his daughter, but he doesn't know what I do and hasn't seen what I have seen.
He hasn't seen other young kids and teenagers with this same cancer who have delayed having the amputation and who have died a horrible death. He hasn't seen their legs grow 2 and 3 times it's normal size from the cancer producing pain that is hard to control. He hasn't seen the cancer break through the skin producing a horrible odor and drainage that can't be stopped. He hasn't seen the families come back months after you told them they needed an amputation, which they refused, now to have the families say they want it, but it is too late - the cancer has spread and surgery no longer is helpful, and the family cries and weeps over their child that may have been able to be spared months previously.
I don't like any cancers, but this is one I HATE. Most everyone with cancer in PNG dies, and this one kills, but it is the deception that it causes that makes me hate it. Physical exam findings can be confused with a fracture or an infection and treated as such, delaying the real treatment. Xray findings, if you don't look close enough or aren't looking for cancer may also be confused with an infection and treated as such for weeks or months, delaying the conversation of an amputation and giving families false hope. Chemotherapy to try and treat the cancer is one of the most deceptive components of this cancer because it can shrink the cancer a little, which gives false hope and the family never chooses to have surgery, thinking the chemo will just keep working, but it doesn't. Families are deceived into thinking that amputation is the worst possible thing for their son or daughter and take the advice of their extended family or village leaders over the doctors who have seen the horrible outcomes, and choose not to have surgery.
The only winner today is the cancer. No matter what this family decides, it won't be okay. Her life, their lives have been changed today. Dreams have been shattered and hopes have been dashed. She either suffers horribly from the cancer that grows bigger and bigger in her leg and causes horrible pain and swelling and disfigurement and ultimately kills her within the next year, or she has a radical surgery to remove her leg and can never walk again on her own 2 feet, with only time telling if the surgery was done quick enough before the cancer spread or not.
I know it isn't an easy decision, so pray for this family as they talk and pray about the future of their daughter and for wisdom for us as we treat and love her.