A few thoughts on Stage IV, recurrence and treatment options

I had hoped, (actually, I truly believed) that on the one-year anniversary of my stage IV diagnosis (April 1), I would be able to report that I was cancer free (or NED). Refusing to believe the doctors who told me a year ago that I was incurable, I chose to undergo radiation concurrently with the most aggressive course of chemo, the big cannons as Sherri calls them, and when my post treatment scans came back clean, the mass in my esophagus had disappeared and my lymph nodes had shrunk to nothing, I went back to work, and I returned to my normal life, I started to think I had in fact been cured.

Well, I guess no one but me was surprised when a new lymph node popped up in a scan end of last year. It was too small to biopsy. A follow-up scan a month later showed no growth, so I thought I had dodged a bullet. I went on my vacation thinking everything was OK, had a great time, then had a CT scan when I got back, which showed that the node and a couple more had grown. Malignancy was confirmed by biopsy, and I panicked. My instinct was to go for the most aggressive course of action again. I wanted more big cannons.

This time, my doctor disagreed, unequivocally. He recommended that I do nothing! Thinking that he had just given up on me, I decided I needed to see another doctor, one that specializes in advanced esophageal cancer, who was associated with a large research hospital and would be better informed and more experienced in treating EC, one of the best in the field.

So I found the doctor I wanted, sent my records and CDs of my scans off and booked my airline flight in search of a better answer. My husband and I had a 2 1/2 -hour consultation with the oncology team, the head of GI oncology and his research fellow. We were both surprised that they spent so much time with us. They reviewed the scans and slides. They patiently listened to and thoroughly addressed all our questions. And in the end we got an answer-- not the one I was looking for, but one we are satisfied with. And one that I am still learning to accept.

Stage IV is incurable (we all know that by now, right?), and the goal of treatment is not to eradicate the cancer but to achieve and maintain stable disease, for as long as possible, with good quality of life.

It's a truth I've known at some level for a year. Still, it almost breaks my heart to to think in those terms.

But with that treatment goal in mind, I now understand that the option of "do nothing" is not unreasonable, and it doesn't mean giving up. Especially for me, because I have no symptoms, the lymph nodes, though malignant, are very small and appear to be growing quite slowly, and there is no evidence of major organ involvement. Given all that, my disease is pretty close to "stable". To treat with an aggressive chemo regimen at this time would probably do more harm than good, not only destroy my present high quality of life, but also shorten it as well.

Sherri has suggested numerous times that it is better to go with a more manageable chemo regimen and save the big guns until absolutely necessary. It seems counter-intuitive to wait until the cancer takes a more dangerous path before bringing out the firepower. But that is the current state of the art (and when treating stage IV, it seems like it's as much art as it is science).

The harsh chemo regimen I had last year almost killed me. I was bedridden for 3 months, I missed out on a beautiful Oregon summer and a lot of activities I love, and I was unable to do the work that I love. I survived, but my WBC is now permanently depressed, and I have some kidney damage, which may limit my options in the future. As tough as it was, it didn't prevent recurrence. I now understand Sherri's point.

And I understand the doctors' reluctance to treat. But after consulting with the specialists, we have decided to compromise. Rather than do nothing, which I just didn't feel comfortable with (perhaps that's a quality of life issue by itself?) I am starting Xeloda as a single agent, at a slightly reduced dose. The hope is that it will slow the growth of the tumors (not eradicate...), and I will be able to continue living my life to the fullest. We'll save the big canons for later.

And despite my personal disappointment in learning that my tumors are growing again, I know I'm one of the lucky ones. I'm still here. I'm healthy, active, and symptom-free. My doctors tell me that I've already beaten the odds.

"Still Here" in Oregon