Wednesday, September 11, 2013

Cancer Crisis?

Yahoo! reported yesterday on a statement from the Institute of Medicine that found "daunting" barriers to  health care for cancer patients. These include an aging population, and thus a likely increase in the number of boomers who get cancer; an essentially under-informed medical field (many doctors don't have the time to keep up with cutting-edge treatments); and a lack of knowledge on the part of patients. Cost of treatment in itself doesn't seem to be a factor -- but understanding the cost/benefit ration of treatment is one. (Will a newer, more expensive treatment give the patient a better chance at survival than an older, less expensive one?)

The full report (all 322 pages) is available here, along with a 22 minute video describing the problem.

What struck me most about it all is the problems that doctors seem to be having in keeping up with developments in the field and explaining it all to patients. Part of that is a communication problem. I think doctors in general aren't good at giving bad news, and that's more of a cultural problem than a personal problem. People don't like to hear it, so doctors don't like to say it. I've yet to have a doctor tell me to just stop eating so damn much and lose some weight. I'm encouraged to exercise, but no one has told me specifically what I need to do. And I don't want to hear it. It works out nicely. So I can certainly see a doctor sugarcoating a treatment that's meant to be palliative rather than curative. We don't want to hear it. I'd much rather have that sliver of hope.

More disturbing, though, is doctors' lack of communication about treatment options. I get that they're busy, and maybe can't keep up with medical literature as much as they would like. On the other hand, it seems to me that the job of an oncologist, more so than most specialists, is to keep people alive. I'd want to know as much as I could to help me reach that goal.

Of course, I'm a Cancer Nerd.

(But, gosh, shouldn't an oncologist be one, too?)

One of the recommendations from the Institute of Medicine is that patients need to be given information on treatments that is easy to understand, and compares the pros and cons of treatments.

More importantly: "Patients can't be passive...It's an important partnership that we need."

To me, that's key. I assume if you are reading Lympho Bob that this isn't a surprise. As patients,we don't need to know everything about our disease (I certainly learn new things all the time, even basic things that I thought I understood). But we do need to know enough to have a conversation, to understand what our doctor says and be able to ask questions. And more importantly, to be able to slow her down and say, "Wait, why are we going with A? Why not B?"

It's easy to just accept what our doctors say to us. But, certainly, as the Institute of Medicine report shows, sometimes they know a little bit less than they let on. For patients, knowledge is power.

Overall, I'd say that's a nice message for Lymphoma Awareness Month. Don't just be aware -- know enough to feel empowered.

I love to get comments from readers who tell me that they find the blog informative. I'm happy to be able to help. I've always said that I write this, first and foremost, for myself, because it forces me to keep reading and learning. But it's great to hear that I'm helping others, too. I hope the blog can play a small part in helping other Follicular Lymphoma patients learn more about their disease.

And there are plenty of other places, too, many of which I link here (though I still say is your best one-stop shop for all things lymphoma-related).

And the best reason of all to keep learning about Follicular Lymphoma? It brings hope.


Anonymous said...

Yes, your blog is very informative for me as a FL patient living in Japan. I have been reading it since my treatment started in Feb. Especially GA101-related articles you have found were helpful, because I participate in a crinical trial but few information about it available here....

Lymphomaniac said...

Nice to hear from you. I will be sure to look out for some more GA-101 material.

I hope the trial gave you some good results.

Anonymous said...

As stated before, I like your blog and appreciate the time and effort you put into it.

Finished B-R chemo for FL in July and it came back immediately. Had a second biopsy earlier this week and am waiting for the results.

Depending upon whether it has transformed or refracted I will most likely be starting either R-CHOP or Revlimid shortly.

Will continue to try to enjoy life either way.

Lymphomaniac said...

I'm sorry to hear the B-R didn't do it for you. I hope you get some answers soon, and you are happy with the course you choose. The options you listed are certainly good ones.

Keep enjoying life.