Total Cancer Deaths Decline - Do I Care?

This was big news a few weeks back. According to the National Center for Health Statistics the total number of cancer deaths declined in 2003 for the first time since such statistics were kept in the 1930s. Do I care? Of course I do. I do find a few things disturbing about such a news story as I have seen it reported.

Medical professionals/researchers/informational web sites love to praise medical advancements and happy sounding statistics. I think with a class of diseases like cancer this is problematic. Did you notice the bold part of that last sentence? If you don't believe me that cancer is not a single disease, check the wikipedia definition. Cancer is not cancer is not cancer, so I'm not sure how much value there is at looking at statistics or big RAH! RAH! stories about overall cancer statistics. In fact, I have this little nagging thought in my head that perhaps it is harmful. If I see a story that says cancer deaths are declining and I think cancer is cancer is cancer, do I think our hotshot docs have cancer licked and now I no longer have to worry about it, fund it, etc? Maybe I do. And that is bad. Especially for the "rare" cancers.

Did you know that all pediatric cancers are considered "rare"? I'm not sure what the threshold for rare is, but CureSearch.org says this about incidence:

Nearly 30% of U.S. population is under the age of 20. In this age group:

  • Approximately 12,400 are diagnosed with cancer each year.
  • In 1998, about 2500 died of cancer.

About one in 300 boys and one in 333 girls will develop cancer before the age of 20. (The distribution of boys and girls diagnosed varies by type of childhood cancer.)

The incidence, or frequency that cancer is diagnosed, has risen since the 1970s for some types of childhood cancer, but rates have been fairly stable in more recent years.

Now there I go breaking my own rules. These are statistics based on a class of disease. Here are incidences by disease (sorry, the image isn't great):

It seems to me when we started our ordeal I saw lots of citing of an impressive long-term survival rate for pediatric cancer. Today as I was setting about to bitch and rant about that in pseudo-conjunction with my line of thought about careless and misleading cancer related news stories, I found such statistics much less prevalent and front and center. I think the CureSearch reorganization of COG materials has improved on this front and really structures things a lot more along the lines of individual disease.

There is some trickle down in research breakthroughs in high-profile disease. Incidence rate and total incidence seem to me (not based on research) to determine "high-profile". Some of the drugs, techniques, and methods used in treating common adult (or less rare pediatric cancers) can be used in more rare disease. This isn't always the case. Hell, I'm not even convinced that when we talk about neuroblastoma in one child and neuroblastoma in another that we are talking about the same disease.

So I've rambled a lot and that is good for me. I hope you got through this and could take something away from it. If I had to summarize, it is this: Don't believe the hype. Cancer is not one disease. There are some diseases that fall into the class that we have made huge strides in treating. There are others that we haven't touched the surface on. Something like 70% of children diagnosed with neuroblastoma have metastatic disease at diagnosis and are considered in the "high risk" category (prepare for a future rant on terminology such as "unfavorable outcome"). Most recent five year survival statistics for this group are 30%. We as a people can't find that to be acceptable and we can't be fooled by reports and news studies that lump all cancers together into thinking that we have made enough progress to stop being interested in curing "cancer".


In the Beginning

There was a "normal" family of four. There was a happy and sweet little boy nearing 2. That boy had periodic and unexplained fevers of an uncomfortably prolonged period of time. He had some odd swelling and darkening of an eye. Then he had pain in his hip. The family was lucky that they had good pediatricians who didn't hesitate to get him into a specialist. The specialist told us that he likely had an infection deep inside his hip and that later that night after an MRI he would likely have minor surgery to clean the inside of the joint. I was really scared by the thought of my little boy likely having to undergo that surgery. That MRI didn't show any infection but did show "shadows" on his hip and Nathan woke from his MRI sedation in a mix of post-sedation and fever induced hysteria. I stayed with him that night and held him tight in my arms in the hospital bed. He screamed for what seemed like hours. It may have been hours. I think it was. The next day there were tests and waiting for results. The results didn't come quick and I wasn't sure they were coming. I left the hospital to get Julia and spend the night with her. Susan called. She said I needed to get back to the hospital quick. The orthopedist had been in to talk to her about the test results. She wouldn't tell me what the doctor had to say. I knocked on my neighbors door to ask her to come sit with Julia and I rushed to the hospital. That drive was bad. Really bad. Sometimes I have flashbacks of how I felt that night when I pull into the turn lane preparing to turn from Woodmen onto Union. It is always a bit of a shock. You know how sometimes a smell or song can put you back into a mood or experience from your past? Preparing to make that turn can do it to me sometimes. The news was obviously bad. Nathan had a surgery a couple of days later to place a broviak (central line) and biopsy his tumor. Funny how scary things like sedation and orthopedic surgery seemed before diagnosis and the realities of what Nathan has been through since.

In the end, the news is what it was and it probably wouldn't have changed things had I been there in the hospital. It still sits wrong with me though that I wasn't with Susan when she first heard the news. I guess unknowingly that was the first of many burdens of Nathan's care to fall on Susan's shoulders. I was in the shower when Nathan's doctor called to tell us that his scans this past June showed a new mass near his kidney. Susan was upstairs in the bedroom. I was stepping out of the shower as she was finishing up the call. I doubt I'll ever forget these types of details.

Relapse is different than initial diagnosis. There is so much overwhelming fear and confusion when you don't know anything about the cancer. With the relapse news I knew that was really, really bad in terms of long-term prognosis, but I also felt hardened and I think maybe even less fear because I had the knowledge of what it meant. I couldn't even guess what to expect from a subsequent relapse. We are preparing for scans again. It is odd for me approaching these. They are always terribly stressful but you can't help but have a gut feeling about them. This time my gut feeling is that the news will be good. Nathan's scans will be in New York this time. We are struggling with the logistics and whether or not to bring Julia with us. Part of me thinks it is selfish that I'm insisting on going and that I should stay here with Julia. That would be the easiest and most economical thing and we wouldn't be temporarily "abandoning" Jules. I just can't imagine what the "drive" would be like though if the news on the scans were bad. We have done this in the past with scans in New York, but things seem different to me this time. Emotional states change, I suppose. I don't want to be apart from Nathan and Susan in case the scan results are bad. We will decide whether or not to change our plans and take Jules with us, but I don't think I could stay here.

Lots on my mind related to this stuff lately. I guess "Cancer Dad" will be getting put to the test.


The Lighter Side

Believe it or not, there is a lighter side to all of this. Sure, it is a forced lighter side. There is some truth when people say, "Well...you have to be able to laugh about it or you will go crazy." I have been thinking about how to convey that lighter side here and I'm drawing blanks. I have shared the humor in this ordeal with Susan, occasionally with other cancer families, and on very rare occasions with close friends. For now, I'll just have to keep thinking about what would or could be appropriate for a mostly non-cancer family audience. And you will have to take me on my word that occasionally through this ordeal there are shining moments when it can all be laughed at.


Roles and Responsibilities

I know that there are incredibly varying views on marriage and what its major components are. In my opinion one of the biggest pieces of a marriage is partnership. For Susan and I that means a partnership of equals, but I suppose using the term partnership shows a clear bias for how we try and operate. The important part though is to have an understood mechanism for dealing with all of the "stuff" that must be taken care of in a household, especially one with children. So Susan and I have a pretty incredible partnership and I think we are pretty good about being flexible enough to jump into each other's roles when necessary when one of us cries out for help for whatever the reason.

Things get a bit complicated for me when you throw a seriously sick child into the mix. From very early on it was obvious that one of my major responsibilities throughout Nathan's illness would be to continue to work to provide a steady income, and more importantly really, good health insurance benefits. This clearly made and still makes sense given that Susan put a hold on her career to tackle the much more difficult and strenuous job of raising our kids in our home. Now more than ever I understand how much more important the family aspect of my life is than anything remotely related to a career. While I know intellectually that by working I am playing an important role for my family, emotionally it just doesn't balance out. I don't feel like the equal partner that I wish to be and feel Susan deserves.

My day might consist of coding, having some conference calls, scoping some potential software enhancements, etc, etc. Now I downplay some of the stress of meeting deadlines, but whatever, that stuff may cause stress but it is nothing compared to the day-to-day stress of chronic illness within your family. Susan on any given day might sit through a chemo treatment, fight with insurance over medical bills, deal with the complexities of having two different sets of doctors involved in Nathan's ongoing care, and in the past sit through incredibly difficult and painful treatments far away from home with no one to relieve or help her. There is no comparison in how a given day for Susan can be so much more difficult than one for me. And I'm leaving out huge factors such as caring for Julia and Lauren in conjunction with everything else.

Beyond the everyday issues it is also difficult that Susan is the de facto expert on Nathan's care. Susan sits with the doctors. She is there with Nathan gauging how difficult a particular therapy or treatment is on him physically and emotionally. I don't tune myself out. I try and be in the know and involved, but given how our roles and responsibilities related to Nathan's care have been "defined", I cannot know as much or understand as clearly the implications of the difficult medical decisions we have to make. This is like a combination punch. First it is just hard to acknowledge and swallow the fact that I am not an equal partner in this aspect of Nathan's care and secondly it is incredibly stressful to Susan in that she carries around more of an emotional burden. Ultimately we still make all of the major decisions together, but I can't help but feel that the process is so much more difficult on Susan in terms of gathering the information, asking the right questions, and weighing her closer experiences to Nathan's treatment.

I think that we have divided our responsibilities as best we could but that we could probably improve on a few things. No matter how well we have divided things logically, it is very difficult for me to feel good about our division of responsibility.

Susan, my incredible wife and partner, is easily the strongest person I know. The burden she carries on her shoulders every day is so immense and she handles it with such grace.


Doctors Don't Know Much

One of the hardest lessons to learn and to continue to cope with throughout your child's prolonged treatment is that doctors really just don't know all that much. Clearly there are some illnesses and diseases, including some forms of cancer, that doctors know more about and can provide clearer answers about, but neuroblastoma isn't one of those and even if it were there would exception cases. Just after diagnosis we were led to believe that there was at least a somewhat "standard" protocol for the treatment of neuroblastoma and that was good and comforting as well as misleading. This was misleading for a couple of reasons.

  1. First and foremost is that current survival rates for children diagnosed with stage IV neuroblastoma are right around 30% (according to statistics provided by CureSearch). If there really were a "standard" protocol for stage IV NB with that type of current prognosis, I would be a much angrier father than I am now. So there really is no standard. There is a series of clinical trials and one hopes that with each successive trial more effective treatment is discovered.
  2. The next thing that blows away any concept of "standard" in NB treatment is that no two children will have the same response to therapy. So a protocol can only be followed up to a point, and that point is where a child's response to treatment deviates enough from the expected response or bounds of a trial.
  3. The third (and final for the purposes of this post although I'm sure I could keep adding to this list) reason that it becomes obvious there is no such thing as "standard" is the huge difference in opinion among the researchers and clinicians in what the most effective current and coming treatments are and will be.
So, for me, if you lump together all of the fear, stress, guilt, etc, etc that accompanies knowing that there is a good chance (I hold out hope, but part of me has to deal in reality too) that this disease will take my son's life, then the second most frustrating/angering/horrible/nightmarish part of all of this is that when there is no standard next step, we as parents have to make treatment decisions. We all know, at least the somewhat reasonable and responsible among us, that when we have children we are assuming an incredible responsibility to care for them, protect them, and make decisions for them in their best interests. That really slams home when faced with decisions like, "Should we have another surgery and remove the remaining tumor before going into autologous bone marrow transplant?". This is one example among many in our experiences and I chose it because it hits all three of the major points I outlined above. First, some facilities are moving to remove bone marrow transplant from their protocols while others are adding multiple transplants. Second, if Nathan had responded as the protocol had outlined and his previous surgeries had been as successful as we were led to believe, then he wouldn't have had any measurable tumor mass come transplant time. And finally, we knew when faced with this decision that we could get any number of differing opinions from various doctors.

Now there is a part of me that understands that it is a no-brainer that the doctors don't have all of the answers, but I still get a bit surprised (not quite the right word, but it will have to do) at the decisions we make on Nathan's behalf that one might think would be better made by a doctor. Or rather, I get surprised at the decisiosn we make on Nathan's behalf that no one can give us an answer or opinion that is based on solid research and science that has enough of a statistical basis to make the decision feel like much more than flipping a coin.

There is too much riding on these coin tosses and I don't much like the odds.



I'm not quite sure where this is going, or if it will go anywhere. When I began a night in the box, I thought that I would post there about the types of things I now intend to post here. Blogging at a night in the box became fun for me very quickly and I don't think this place is about fun.

So, what is "Cancer Dad" all about then? Cancer Dad, I think, will be about me. This will be a place where I can selfishly post about how life dealing with a child with cancer impacts me as a person, father, and husband. There will certainly be things here about how it all impacts other members of the family, and especially Nathan, but I'll focus here on my perspective and, who knows, maybe it will even help me deal a bit. You see, whatever the appearance might be, I don't always do so well with this stuff.

So, I'm hoping to be truthful and honest. I'm hopeful that this may prove helpful to me and possibly be interesting to others. It may turn out to be neither, but I suppose that is the unknown that all blogs start with. What I don't expect is for this to be much fun to read. I can hope for interesting, but I doubt it will be fun. There are times when humor is appropriate and necessary in this struggle, and that may come out here at times, but this isn't planned to be about fun.

Again, this is a complete experiment. I may prove to not have the ability to be as open as I think I will need to be for this to either be helpful to me or interesting to others. If that is the case, then the blog will probably whither and die. So, stay tuned I guess...