The Cancer Continuum

Celebrating two years post-treatment with no new tumor growth 

(and how my Grand Fonds scarf matches the painting in the oncology wing).

South Shore Hospital, February 14, 2013

Like so many others this winter, I had a persistent cough/cold/sinus infection (or some combination thereof) dogging me for a couple of months. I won’t go into the gross details, but suffice to say that I finally went to the doctor a few weeks ago to see what could be done.

The doctor - not my regular physician - put me on a 2-week course of a very strong antibiotic, which eventually made me feel like myself again, thank goodness, but that’s not what was interesting about this visit.

When the nurse first escorted me into the exam room, we had the following exchange:

 “Aren’t you the one who had a brain tumor?”

“Still have it,” I smiled.

“They couldn’t get it all out?”

“Well, not without making me a vegetable.”

I said a few things about how lucky I’ve been to have such good care and to have had a very cautious neurosurgeon, etc. etc., before we finally got around to the reason I was there.

One of the things I learned fairly early on after my diagnosis is that I’ll encounter people every day who don’t know how to talk about cancer and the emotions that it engenders in them. It is, after all, a profoundly discomfiting subject.  But out of necessity, I’ve learned to talk about it dispassionately, treating it as any other matter-of-fact aspect of my life, like “I have a daughter in third grade” or “I drive a Subaru.” 

Of course, it’s a lot easier to be dispassionate when you’re not currently undergoing treatment, and you’ve got the emotional distance that time brings. Not to mention when you don’t necessarily “look sick.” So how did the nurse know I had a brain tumor?

She obviously remembered me from the day, many months ago, when I went to see about getting an antidepressant to help combat my really weepy times. When the nurse screened me that day, I wasn’t suffering from major depression. So she was a bit puzzled, then, as to why I was there. Well, I have a brain tumor, I had told her. (Also, the screening instrument is useful, but imperfect.) And sometimes  I lie awake at night thinking, “I’m going to die young.”

"Well, keep your chin up," she had said.

(Guess what? Prozac helps me do that.)

Anyway, at this recent visit, when the doctor - again, not my regular physician - came in, we talked about how long the sinus infection had lingered and how to treat it. Reading my electronic medical record, she noted that I am on Tegretol, an anti-seizure med prescribed by my oncologist. "Why do you take that?" she asked.

"Because I have a brain tumor," I answered. 

"Is your immune system compromised?"

"No, I finished treatment two years ago." 

One might think or hope that with a pre-existing condition as serious as a glioma, there would be something on my medical record in all-caps, flashing BRAIN TUMOR, with a link to my treatment info. But obviously, one would be wrong.

This isn't uncommon. The Journal of the National Cancer Institute devoted a 2010 special supplement to how oncologists and primary care doctors can work together in the longer term "across the cancer continuum." As with any other "chronic," long-term disease, many cancer patients will have intense periods of active oncology treatment followed by years of remission, in which they need more standard medical care.  From the abstract of the study by Grunfeld and Earle, who also note that most cancer survivors will die of causes other than cancer:

The period after completing primary and adjuvant cancer treatment until recurrence or death is now recognized as a unique phase in the cancer control continuum. The term “survivorship” has been adopted to connote this phase. Survivorship is a time of transition: Issues related to diagnosis and treatment diminish in importance, and concerns related to long-term follow-up care, management of late effects, rehabilitation, and health promotion predominate. In this article, we explore the unique challenges of care and health service delivery in terms of the interface between primary care and specialist care during the survivorship period. The research literature points to problems of communication between primary and specialist providers, as well as lack of clarity about the respective roles of different members of the health-care team. 

As another study noted, "not infrequently, it is the patients who must attempt to fill in the gaps between providers." Quotes from patients highlight frustrations like mine when they see primary care doctors. So while I'm very glad to be where I am on the cancer continuum, I'm always going to be someone for whom such issues arise - and indeed, just last week, I had to discuss my diagnosis with my eye doctor, who now wants to see me annually instead of every 2 years. 

I mention this in part because like so many other aspects of cancer, this was one I didn't anticipate. You're constantly having to out yourself and to be, as a survivor quoted in one of the JNCI studies said, your own "quarterback." I feel fortunate that I'm pretty good at that, and also that I have excellent relationships with my primary care doctor, my oncologist, and my therapist. But on those occasions when I'm seeing a different provider, I'm reminded just how pervasively cancer changes things.

On a brighter and more dapper note, it wouldn't be a post from me without a photo of my thrift scores. The blond cutie and I are some of each other's biggest fans.

Jacket: from Savers. Pocket square: from the same dumpster as some of the goodies highlighted in this post. Pants: Ann Taylor Loft, from Savers. Shirt: Thomas Pink (sale). 
Scarf: Savers. Shoes: vintage Ferragamo wingtips from eBay. 
On the girl: sweater (no tags), mini-Boden pants (consignment!)

Namaste,

Kelley