The next couple posts will be more educational and dry than most of my previous posts. Right now our mental states are "all business." We have been rapidly collecting and analyzing all the information we have gathered and consulting wtih anyone who knows anything who will talk to us so that we can understand our diagnoses and make decisions about treatment. Therefore, there is no room for philosophy or emotion, all that has been put aside for later so we can have clear heads.
But, before we explain our diagnoses and the dilemmas we face in deciding our next steps, it is probably useful to do a brief overview of cancer. We sure didn't know a darn thing about it until a few weeks ago, so we are sure that someone might be in the same boat. Besides, it helps me to think if I write it all down. And, as always, any errors are totally mine and anyone with more knowledge should feel free to correct me.
Basically, cells in our body divide and make new cells every day. Some cells do not regenerate at all, or often--nerves, for one. And some replicate a lot, like our entire GI tract. Every potato chip makes small tears in your mouth and it fixes itself every day. A PET scan illuminates rapidly dividing soft tissue cells and a bone scan shows bone activity. So in most healthy people a PET scan will light up the heart, GI tract, and a few other organs. Bright spots in your liver or in the brain are not a good sign. Bo's bone scan lit up all his growth plates, but did not light up any areas in his chest where the tumor was.
Sometimes cells don't divide very well--they make mistakes. Sometimes we know why, and sometimes we don't, and normally the body kills them off and they are replaced by healthy cells. In cancer, those freaky cells replicate themselves and grow stronger, steal blood from the rest of the body and become their own little organisms--tumors. Leukemia is slightly different, but it takes over the blood, and lymphoma-type disorders take over the lymphatic system. Some tumors are benign, and some are horribly aggressive--blastomas, for example. We also know that some people lack tumor suppressing genes and grow cancer really well, and continuously stressing the same cells over and over causes cancer through too frequent replication and gene mutations--smoking causes lung cancer, chronic heartburn becomes esophogeal cancer, etc. And as we age, cancers become more frequent for the same reason--our bodies just wear out.
For that reason, most adult cancers look the same and develop the same. Prostate cancer, some breast cancers, melanoma, and others look identical under a microscope and treatments are pretty well developed because they can be tested on many different people. Childhood cancers are rare. According to St. Jude's, for every 100,000 kids under 15, every year 14 of them will be diagnosed with cancer. Some cancers are the same, and many have names--Wilm's tumors, retinoblastoma, Ewing's sarcoma. But some are rare, and sometimes children develop adult cancers. In general children get what are called stem cell cancers--kind of like freak accidents. Adults get epithelial cancers, which affect the linings of the organs, cavities or body surfaces--the cells that interact with the environment.
There are three ways to treat tumor cancers--surgery, radiation and chemotherapy. Surgery is obvious and usually desirable. The goal is to remove the entire tumor, without "spilling," and with good "margins" so you leave nothing behind. Sometimes tumors are inoperable and sometimes there is fear that not all of it was removed. Then you consider "adjuvant" therapies. Radiation and chemo agents destroy tissue--both good and bad, but the theory is that good tissue heals itself better than cancer cells. Chemo agents are also selected because they work better on cancer cells than on healthy tissue. They stop cells from dividing, and all cells divide differently, so if they can interrupt the processes in the cancer cells without affecting healthy tissue, that is ideal. And, that is why there are different chemo agents for different cancers. Sarcomas have different agents than gynecological cancers, etc.
But all cancer treatments have risks. We know the common risks of surgery; anesthesia problems, pain, accidents, etc. But the risk of radiation and chemo are much greater. Besides the very true fact that some people die from complications of treatment--toxicity, major organ damage, and infection are just a few of the immediate risks. Late effects are also not uncommon. Heart problems, hearing loss, nerve damage, infertility and cancer, especially leukemia are all more common in survivors of childhood cancer than in the rest of the population. Additionally, some chemo agents have a much greater history in the juvenile population than others, so in effect they are "safer."
In conclusion, once a cancer is suspected, treatment and identification begins. Often biopsies are performed so that identification can be first. In many cases, like ours, the simplest biopsy was not definitive and it made sense to attempt removal. Sometimes radiation is performed before surgery to try to shrink the tumor, and after diagnosis, radiation and chemo may be recommended, also. Ongoing scans and tests tell whether treatment is working and patients are observed for a long time to ensure success and or recurrence.
So that's the condensed version. My next post will explain our diagnoses and our dilemma.
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