One of my greatest frustrations about neuroblastoma is the lack of quality neuroblastoma information out on the Internet. For years I have shouted the mantra - educate yourself. None the less, I still see poor decisions being made - both by pediatric oncologists guiding the decisions of the children entrusted to their care and by the parents themselves. Often, ultimately these mistakes come at the cost of a child's life. In fact, I am sad to say that is the most frequent end result.
Now, I want to be very clear. That is not an opinion. That is fact. It is not something that I concocted in my brain because I believe that I have some secret insight into the disease. What I am talking about is parents and physicians not following what is expert opinion on the disease - not doing exactly what the neuroblastoma experts say is in the best interest of a child with neuroblastoma.
It happens everyday.
The scary part is that most physicians and parents don't know that they aren't doing what is in the best interest of a child. They think they are doing the right thing but in the end, quite often, it is only guaranteeing therapy failure.
So, why does this happen?
Everyone is always looking to put blame on someone. It must be some one's fault. In this case, I don't know that there really is an answer. It seems easy to blame the oncologists. After all, it is often their bad advice that contradicts what experts believe. But, when you look at their plates you can see why they don't have the time to comb through and interpret all of the expert opinion. Chances are they are in the midst of treating 50 to 100 or more other children whose cancer could be 1 of any 80 different types of pediatric cancer. Amidst this, research is changing the landscape of each one of these cancers every day. It is hard enough to be an expert on any one single type of cancer - much less mastering two. Combine this with all of the other pressures and paperwork and it quickly becomes obvious that it is almost impossible for someone that does not work with the disease everyday to stay on top of it. Do you know how complicated of a disease neuroblastoma is?
No, I find it difficult to blame the oncologists entirely.
It must be someone else. The parents? No, it isn't really their fault either. Most parents don't have medical degrees or the wherewithal to master the disease. Most parents I have met have difficulty with reading the research, much less interpreting it. It is one thing to understand the research but to be able to apply it is a much larger and more difficult task. Often, most (those with medical degrees included) quickly loose sight of the forest for all of the trees. No, parents have enough to worry about in caring for their sick child.
It isn't their fault either.
So, whose fault is it. Perhaps, it is mine. Although I advocate for more education, I write as much as time will allow and I talk to as many people as I can; it seems like I always end up finding families after the medical mistakes have been made. Sometimes I even see this with families whom I met early on in their diagnosis but who don't reconnect until after something has gone wrong. How do we catch them before? How do we get the information out there?
At this point, I think the burden still rests on the parents to protect their children. You must ask questions. You must do your homework. Be involved. Talk to other parents. At this point, you are the only one that can do it. I don't tell you this to scare you. I tell you this to help save your child's life. I can't guarantee that you will win the battle if you do everything correctly but I can tell you that you will significantly increase your odds.
You know, a year and a half ago we found out that antibody (given as it was in ANBL0032) increased survival by 20%. That was a huge margin.
I would bet money that avoiding these treatment mistakes would increase survival by even more.
And that, you can control. It is in your hands.
Ask questions. Talk to knowledgeable families. Talk to the experts. Don't simply accept something as fact unless you have heard it from an expert.
It is your purpose.
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What about oncologists who are NOT experts in NB referring families to hospitals/oncs who ARE?
Our first hospital didn't even have MIBG capability. I didn't know what a MIBG scan was until we were halfway done with consolidation chemo. I had read about them, but when I asked the hospital I was told a bone scan was just as good. By protocol I supppose it is, but we all know it's not.
I believe those doctors should have referred us to another hospital that dealt with, and was equipped to handle, NB as soon as we knew we were dealing with NB. Now we don't know if he is MIBG avid, and radiation was full of questions.
By the time I pulled my head out of the fog and had the ability to read about the disease, we were too far gone to make many changes.
That's my personal vent about the issue. I also hate seeing parents ask for advice about treatment and seeing other parents tell them "There are no right or wrong answers, only what is right for your child and your family." Now, no one may be able to predict what will end up being the right choice, but there is a bettr choice and a parent can never be expected to make that right choice without all the information available to them.
I could go on and on; this topic makes me angry.
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