[Debbie L.]

Hi Spitfire. As you know, no one can (alas) tell you exactly what will happen to you as an individual person, but we can get some information from studies that have looked at recurrence rates for different subtypes, stages of disease, etc. I have a PDF of a recent study that looked back (retrospective study) at a group of women treated from 1986-1992 and compared recurrence rates to a group treated between 2004 and 2008. It clearly shows that modern treatment has reduced recurrence rates across the board.

In addition, it showed that the timing of the recurrences stayed essentially the same for the different subtypes. As in the past, the ERPR negative ones (both HER2+ and negative) had the higher recurrence rates, which were highest in the first 3 years and then fell off quite rapidly, while the ERPR+ subtypes had much less of a peak, that did not fall off so drastically.

The article discusses various limitations of the studies used, but concludes that they had large enough numbers that they feel their results are accurate.

Another topic raised by your questions is the one about vigilance or high-alertness. So far, studies have not shown that catching a systemic recurrence early improves outcome, except perhaps in the brain (because fewer, smaller brain lesions can be treated with some form of targeted radiation rather than whole brain radiation). Since HER2+ cancers do sometimes recur in the brain, it's arguable that surveillance for that would be a good thing. For the rest of the body -- it's a personal decision. Some women feel better doing lots of scans and tests after primary treatment, insisting that catching it "early" is important or that they need the reassurance of the negative tests. Others find that way of follow-up to be too anxiety-producing, especially knowing that it won't make a difference to their outcome. It's a personal decision, to be made after discussion with your oncologist. People seem to feel very strongly about follow-up styles, and quite a few change their oncologist during this period, to find one who will do more testing.

The NCCN guidelines, widely used by both oncologists and insurance companies in the US, continue to recommend only regular MD visits (medical history and physical exam), and if applicable, mammograms, as follow up for stage 1-3 breast cancer.

I can't post this article here (too long, and no attachments) but could email it if you ask me and provide your email address. It has interesting graphs. For me, a graph is worth a thousand words.

Debbie Laxague