[dlaxague]

First, my condolences on the loss of your mother. Always a hard thing but the timing must have made it especially hard for you, and for her, also.

As to when you are considered NED, for most after a primary diagnosis that is after surgery, unless margins were not clear, etc. NED doesn't say no cancer - it says no evidence of cancer. A subtle but important difference.

Different oncs and different women prefer different styles of follow-up after primary breast cancer. There have been studies done that show no benefit (to survival time nor to quality of life) to finding a metastatic recurrence with scans before symptoms herald that recurrence (and the difference between the two is a few month's time, on average). There are several reasons why this could be true. One is that recurrent disease either does or does not respond to treatment - more about the biology of the cancer than about the extent of the cancer. We know women on this list who have been near death from organ involvement and have had a dramatic response to chemo and gone on to live many quality years. We also know women with small mets that did not respond and that progressed relentlessely though perhaps not rapidly. But the whole "find it small/early" approach is in question both in primary and metastatic cancer, because it's probably more about the biology/response of the cancer and less about the size of the tumor or amount of recurrent disease. The national guidelines (NCCN and ASCO) do not recommend any follow up except a basic history and physical and other routine health mainteneance testing, after a diagnosis of primary breast cancer. Follow up, alas, does not prevent recurrence.

The argument to the above, and there are many experts who would counter with this argument, is that it might be possible to use a milder treatment, especially in the ER+ population, if the recurrence were found before it was widespread. Specifically, a hormonal treatment instead of chemo might be first line, and have less effect on QOL. The argument to that is that even if chemo is needed initially to beat back something symptomatic, then there's still the option to go to the "easier" hormonal treatment once there's response from the chemo. So some oncs and patients favor intensive follow up and some do not. Insurance usually still pays for intensive follow up, despite the guidelines, which is somewhat surprising and imho, subject to change at any moment.

Okay, up until now I think that was a fairly unbiased appraisal of the thinking about follow up after primary breast cancer. What follows is my opinion only.

The "toolbox paradigm" makes sense to me. Once breast cancer is metastatic, there are a certain (limited) number of tools in the toolbox. The goal is to use up the available tools as slowly as possible, and to use the smallest (most gentle) tools first and the big jackhammer tools if desired as a last resort. It is always hoped that more tools will come on the market as time progresses. But the number of tools available is limited both by how many are in the box and by how much hammering a body will tolerate. So there is a distinct advantage to gleaning as much time as possible between tool changes.

As for scans for peace of mind - well, they will tell you that there is no cancer seen, that day. But they do not come with a warranty. There could be cancer to be seen the very next week - who knows? No one. Alas. That is not much reassurance.

After a primary cancer diagnosis, we experience incredible uncertainty. We can try to erase that uncertainty with things like expensive PET scans to (falsely) reassure us, or we can find ways to live with that uncertainty. We can use that uncertainty, and the pain that it causes us, to force us to make decisions about how we want to live. We can choose to live for this moment, savoring this moment, while accepting that we have little control of the future. We can of course hope for continued health. But if we waste our time fretting about what might come, and in futile attempts to achieve some illusion of control over what might come, we are wasting precious moments right now. I'm going to add a quote by MaryAnn Romano at the bottom of this post about that.

And then there's the stewardship issue. Scans are expensive. Many many people in our country lack basic health care services. If we abuse the system by demanding expensive scans that have no evidence of benefit, we are being poor and selfish stewards of limited resources. The technology has outstripped our (society's) ability to pay for the technology, and we cannot continue on this course. Each provider and each patient should feel some responsibility to use resources wisely.

A few caveats. The way the no-scan follow up plan works is if everyone (patients and providers) know what to do when symptoms arise. The rule I've heard most commonly is that if a symptoms lasts two weeks, or if it is extremely severe for any length of time, the patient reports it and the provider's first action is to rule out mets. Some providers will first try to rule out garden variety things - for example, advising rest for back pain. It's the other way round. Symptoms = scans, and then if they are clear, move on to garden variety things.

Every time we have this discussion we seem to get a little muddled with the difference between follow up after primary breast cancer and follow up after a recurrence. There are still some oncs and patients who like the same approach (wait for symptoms) even after a recurrence (although most do brain surveilance for HER2+ cancer). But most keep closer track with both scans and markers (if they are accurate for an individual), once there has been a recurrence.

So once again, the answer is - no single answer. Different answers, depending upon each person. And the right answer for each person can only be decided by that person. Consider the information, and go with what feels right to you - in your heart or gut or wherever that knowing is. Listen to that "still small voice". You'll have to be very quiet to hear that voice. Tell your busy chattering mind to take a break, and just sit and wait for the knowing. It will be the right decision, for you.

Debbie Laxague
Quote, as mentioned above, snipped:
"Serious illness takes you to life’s horizon. Yet, here at the edge is the first step of the beginning of the healing journey. It opens all other healing pathways with the gift of present moment living. That is, the awareness that the now is, in reality, the only reality. You have a choice here as well. Use this moment in wishes or regrets for a time past before illness…or with dread and fear for your future. In either case, you will poison the present and miss your opportunity to live this one moment to its fullest." Mary Ann T. Romano