[dlaxague]

Hi, this is a great question and the last time it came up, there was a lot of emotion generated as we talked it through. I'm going to try and be ultra clear and polite with my words. Feel free to call me on it, if I don't sound polite and dispassionate. I like lively debate. I learned a lot last time, and have altered my stance a little, although niggling questions still remain (for me).

Standard US guidelines do not recommend scans or markers for follow up after treatment for primary breast cancer. They are generic guidelines (for all sub-types of breast cancer, all primary stages) and are from national and well-respected sources (ASCO and NCCN). The research to support this is older (mid-'90's, if I recall). The reasoning, supported by this research, is that although scans and markers CAN detect a recurrence before symptoms announce it, it does not seem that this makes any difference to length of survival nor to quality of life. The rule of thumb for most advice on this is that any symptom lasting two weeks should be investigated, and cancer recurrence should be ruled out BEFORE garden variety causes are considered.

There are examples on this list that prove this point: for example, women near death with extensive lung or liver mets, who responded to treatment (typically chemo and/or Herceptin) and became NED for extended periods, with maintenance Herceptin and/or hormonal treatment for years afterwards. There are other examples of women with small, apparently less-threatening mets who had a more steady progression despite all possible treatments. And then the ones whose mets were scan or marker-detected who had excellent response and long remissions. And of course, many stories in-between. It does seem to me to be more about the cancer's biology and response to treatment than about its size. So much variation in each woman's cancer that it's impossible to make reasoned decisions based on anecdotes or even on one onc's experience. Large trials are the only way this information becomes clear.

It is argued by others that these guidelines are outdated and may not apply to all subgroups of breast cancer, HER2neu+ in particular. It is argued that if found at a smaller size, perhaps less harsh treatments could be used initially, for example a small liver met could be treated surgically, with RFA, or hormonally, while larger mets that compromise liver function demand quicker, harsher action with chemo and targeted therapies.

It is argued by some that this approach (earlier detection) actually impacts QOL negatively, as one lives longer with the knowledge of mets but does not live longer nor better overall. Oncs who follow these national guidelines will add that in their experience, another QOL issue is the anxiety caused by positive results on markers when no disease can be detected, causing a tense wait for the next round of tests.

On a slightly different topic, but related - it is argued by some that women with quiescent or NED mets who are on relatively benign treatments (Herceptin alone or hormonals, for example) are better off to wait for symptoms of progression before investigating, as opposed to scanning or doing markers at regular intervals. The thinking here is that once recurrence happens, there is a tool box available. It may not matter exactly which tools are used when, but since there are a limited number of tools in the box, it's wise to use them up a slowly as possible. Jumping on a small, new, symptomless met may seem intuitively smart, but it's also possible that whether small or huge, there are "x" number of months of response available from that particular tool and it's better to wait and use it when symptoms herald the met. Does that make sense? This style does not suit everyone but it's a perfectly reasonable style.

Sorry, back to the topic at hand:

It is known that for brain mets, it is absolutely true that earlier/smaller detection offers more and better options for treatment, especially local treatment, which has fewer side effects and leaves the big systemic or whole-brain guns for later. But brain mets is only very rarely the first site of recurrence so routine brain surveillance is probably better reserved for follow up of other recurrences.

Still, it's logical to ask the question of why this same principle could not apply to local control of mets in other locations. There is some evidence that local control of small single mets outside the brain can result in prolonged periods of control, but the number of women for whom this would make a difference is perhaps small.

So what to do? I'm going to post some devil's-advocate questions and musings.

Markers are relatively cheap. Should everyone get markers done regularly? Or just certain "high risk" cancers? How regularly? A fast-growing met can get pretty nasty in just a few months. If this ultra-early concept is of importance (still, remember, it is an "if", if we are going to practice evidence-based medicine), and we're only doing markers on high risk women who are likely to have these more-aggressive cancers, then maybe markers should be done monthly? And for how long? Two years? Ten? That's a lot of anxiety for most women. The mindset of someone being tested monthly for recurrence is going to be affected. Is it healthy to live in such a state of hyper-awareness/vigilance, for the small and yet-unproven possibility that such vigilance might make a difference? I have changed my stance on this, since the last discussion. If someone chooses to do regular markers after full informed consent of the risks and benefits, I am okay with that. It would not be my choice, but it's hard to argue against it if it feels right for others.

And we can't talk markers without mentioning that one drawback is their unreliability. Too many false positives (anxiety, expensive follow up scans, no recurrence). Some false negatives - not all recurrences raise markers even when they are large and extensive. And no way to know, unless there IS a recurrence, for which cancers markers will be a useful tool. I think that IF we could develop a reliable marker, and IF we could prove that local treatment options improved clinical response (survival or quality of life), then we'd be getting somewhere.

Regular scans as part of follow up could be justified with the same arguments except for two differences, and in my mind they are major differences. (1) The technology is wildly expensive and in my opinion (OPINION, mine only), to demand scans of any kind after adjuvant treatment, in the absence of symptoms, simply for reassurance/peace of mind, is wasteful of our limited resources, and selfish. (2) There is the issue of radiation exposure involved in scans and the carcinogenic potential of that exposure, especially long-term. Plus, scans (and for that matter, markers also) done only for reassurance/peace-of-mind offer that reassurance only for that moment - they do not carry a warranty (cancer could be raging the next week).

Might it be better to find a way to come to terms with the uncertainty? Does the ultra-vigilant style appeal to us, in part, because it offers us that illusion of control? I am not saying that this is true for everyone, but I know that it's true for me and I encourage you to consider the question dispassionately. I would hazard a guess that for most of us on this list (who desire information and understanding or we would not be here), one of the harder aspects of our cancer diagnosis has been confronting that uncertainty - the realization that for the most part, we have almost no control or our cancer. We do have control of how we live with the uncertainty. Finding what works for each individual in that regard is life-enhancing, and the exploration is one of the gifts of cancer.

Phew, have you made it this far? More questions than answers. Certainly we have more answers than our mothers did. But each answer opens up so many more questions. For this particular question, the answer may be a long time coming so in the meantime we can inform ourselves as best we can, and make the decision that seems right for us, individually. No one else can make these choices for us. (If our chosen style of follow up is not the same as our onc's then it might be time for a new onc.)

Debbie Laxague