Watching and Waiting

Occasionally, someone in my support group will bring up the topic of "watching and waiting." Maybe it's someone new, who wants advice on dealing with it. Maybe it's a veteran of the group, who's just going through a rough patch. But it seems like everyone, at some point -- maybe at many points -- goes through that difficulty that makes some people on W & W refer to it as "Watching and Worrying."

I'm no different, I guess. I have myrough patches. Part of the difficulty (well, I guess it's the only real difficulty) of watching and waiting is in being in a kind of purgatory. We're sick, but we're not too sick. We're happy that we don't have to be treated yet, but we wish we could something. We feel OK, but every little ache, pain, bump, lump, creak, crack, whatever, is magnified. Is this it? Is the waiting over now? Does the serious stuff begin? Do I have to stop pretending maybe this was all a mistake? You're just never quite sure what's happening.


NHL is not the only cancer to use a watch and wait strategy. Prostate cancer is also sometimes very slow growing, so low-risk prostate cancer also uses watch and wait, and older prostate cancer patients (over 70) are sometimes told to watch and wait, too. It's slow growing enough that it won't really affect them for years. In fact, many men die of other causes, without ever knowing that they'd had slow-growing prostate cancer.


The NHL community has been using watch and wait for a while. It makes sense for a lot of people, and about 20% of NHL patients choose to watch and wait after diagnosis. If there are no symptoms, and the lymphoma is growing slowly enough, there's no reason to begin the expense and discomfort of treatment. Another big reason for watch and wait with follicular NHL is that fNHL has a nasty habit of coming back after it's been (seemingly) wiped out, and the sequence of treatments after recurrence becomes important. So watching and waiting allows for more options later on, and for more time for newer, more effective treatments to be tested. Those are certainly my main reasons for waiting.


So why all this reflection on watch and wait?


There's been a trend in the last few years against watching and waiting. Because there are now so many options for treatment, some doctors think it's not worth the emotional stress of waiting -- better to give someone treatment right away, especially if the first-line treatment is something without too many side effects, like Rituxin. And in younger patients, there is a feeling that they can handle some of the rougher treatments that may be more useful in achieving a lasting remission.


But now there's a slight shift back the other way -- that's what's prompted the relection on watch and wait for me. Some doctors at Dana-Farber are speculating that a large number of people might have indolent lymphomas like fNHL for years and don't know it. So they've been on a kind of watch and wait unknowingly. They are speculating that the recent spike in the number of incidents of fNHL is kind of false. There isn't more fNHL out there, it's just that better screening and testing has revealed more cancers that have always been there, but undetected. So they're suggesting watch and wait be used more, since the nature of fNHL is to keep growing slowly.


That's good news, if you look at the big picture. There may very well be more people diagnosed, but who don't need treatment for years, which will raise the overall survival numbers significantly. Statistics provide hope -- a false hope, but hope nonetheless.

Of course, it's less good news for people who have already been diagnosed, and whose lymph nodes popped up enough to need treatment. But overall, it adds to the kind of hopeful picture that I look for.


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I'm leaving town for a few days. Off to a technical writing conference. I'm looking forward to learning lots of new stuff. I haven't had many opportunities for this kind of thing since I've been department chair. I'm seeing the trip as the start of a kind of new chapter in my life. I'm done as chair in August, so I can get back to teaching teaching and research, and I look forward to incorporating some of the new stuff I learn next week into my classes. I really miss the excitement that I used to get from teaching and scholarship.

But it means I probably won't be posting anything until next Thursday. I'm leaving my laptop at home, and I don't know what kind of Internet access I'll have. Plus, would you really want the kind of updates that I'd be able to provide after being in seminar rooms all day? Me babbling on about web 2.0 technologies as potential tools for interactive documentation? Sure, I think it's fascinating.....

Next Thursday is also the day I go back for my next check-up with Dr. R. I'm not anticipating any changes. I feel good (ran 3 miles this morning!). But you'll need to wait a week for the details.