[Debbie L.]

This discussion is so full of emotion that I hesitate to enter the fray. But it seems like someone should make a few points.

The main thing is that IF breast cancer recurs (metastasizes), there is no such thing as "catching it early". We have this early detection thing so drummed into us that it's hard to shift our thinking. But many studies have shown that women who have their recurrence detected by scans or markers (before symptoms) do no better than women whose recurrence is picked up when they report symptoms. That is why treatment guidelines in the US and elsewhere recommend only regular MD visits and history and physicals for follow up after primary breast cancer. There are some qualifications to that rule and I'll mention them below.

Some people read the above and "hear" that there's nothing that can be done about metastasis so why try. That's not at all what the research says. There are MANY things that can be done with great success, especially for HER2+ cancer, but those things work equally well whether the recurrence is found before symptoms herald it, or not. Once cancer has metastasized, most women enter the queue of being in treatment for the long haul. The only difference between those who pick up a recurrence via scans or labs, and those who report a symptom that is investigated and found to be a recurrence -- is that the first group lives with the knowledge of the recurrence a little longer (typically, a few month's difference). They do not live longer, overall.

So the caveats here are at least two, imho. First, each person must be fairly vigilant for said symptoms and not deny or ignore them. A good rule of thumb is that anything severe or anything lasting longer than 2 weeks should be worked up to rule out a cancer recurrence. NOT worked up as a garden-variety complaint (like, for example, doing conservative treatments for back pain to see if it works, before ruling out cancer recurrence).

The second caveat is specific to HER2+ cancer, again just imho. It's about CNS and/or brain mets. Since after Herceptin treatment, brain mets are a little more common, it makes sense to me to do some kind of imaging to watch for this -- as in this case, the earlier the brain mets are found, the more options for radiotherapy there are (this is, again, unlike the situation in the rest of the body where the tumor, pretty much regardless of size, either responds or does not, to the systemic therapy, so size is less of a concern). The issue here, and it's a big one, is that no one has any idea how often it would be best to image the brain in order to make a difference. I don't think there are any official recommendations about this but most oncs are aware of the higher risk of CNS recurrence and should be open to some kind of follow-up.

Back to that "responds-or-not" bit -- we can see the proof of this by reading the signatures of so many women on this list who are living with metastatic breast cancer. You'll see those who had big recurrences in vital organs yet had complete responses and have remained NED for LONG periods of time (perhaps forever). You'll see those who had small recurrences that responded poorly to treatment after treatment, perhaps moving fairly slowly but still relentlessly advancing. And all kinds of in-between. In the body (below the neck) it seems to be much more about biology and response to treatment than it is about size or bulk of cancer. I think that's mostly about the difference between treatment with radiation (size-limited) and systemic treatments. IF we figure out how to effectively get across the blood brain barrier with systemic treatments, this distinction may disappear.

We know that HER2+ cancer tends to be fast-growing. So especially for HER2+ cancers, a clear scan (of brain or body) today carries absolutely no warranty. Which brings us to the next reason women want scans and intense follow-up. For reassurance. Of COURSE women want reassurance, it's very scary to be diagnosed with cancer and then to finish the grueling treatment and learn that no one knows if it worked or not -- that's a lot to adjust to. But the fact is that no one can tell us whether cancer will recur or not. It's a huge uncertainty to learn to live with, and we each find our own way to do that.

Doing lots of tests to "reassure" ourselves every few months is probably not the best way to smooth our way. Mainly because that approach will not save nor lengthen our life. But also because that approach puts us on a roller coaster of heightened anxiety, especially around the time of the scans/labs -- doing the test, waiting for the results, etc -- and all to no benefit.

And lastly, the thing people don't really like to hear but we DO need to consider -- is that it's costly, very costly -- to do the kind of follow-up some are advocating. In our country we spend SO much money on healthcare and yet we have some of the worst health outcomes, when compared to other developed nations. Our technology has far outstripped our ability to pay for it. We (the big societal "we") must do the hard work of deciding what will give us the biggest bang for our limited bucks, when it comes to health care. Doing scans that cost thousands of dollars, just to reassure someone (but not lengthen their life nor relieve suffering) is just not a very big bang. And in theory, it takes resources away from those who very much need relief of suffering or lengthening of life.

Again, I hesitate to send this because I know (from previous discussions, smile) that rather than calming and soothing the emotion in this thread, it may stir things up even more. But I am pretty sure that the strength of this list is in its honoring of both heart and knowledge, so I feel there should be some balance offered. That's all I'm trying to do -- offer some balance. And I'm tough-skinned, you can yell at me if you need to and it will be okay. I know it's hard, especially that time as treatment ends.

Love,
Debbie Laxague