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I was dx 12/02 with 1.5 cm tumor, ER/PR 90%+, her2+++, 1+ lymph node (out of 23)
I have never read anything that says in absolute terms that early stage her2+ patients will always have a recurrence. I've asked my onc specifically about the "not if, but when" statement and he was adamant that this notion is a terribly misleading falsehood. According to him, and other sources that I have read (such as Dr. Susan Love), the fact is that her2+ makes the cancer MORE likely to recur than if her2-. That means that if your tumor characteristics (size, number of nodes, er/pr status, etc) yield a 30% chance of recurrence after traditional treatment, then the her2+ factor might take that risk up to 40 or 45% (these are just hypothetical numbers to illustrate the point). Regardless, it does not take the risk up to 100%! How early stage herceptin affects these numbers is, right now, unknown.... but the theory is that it will reduce these odds dramatically.
My oncologist has told me that traditional factors such as lymph node involvement and size of tumor are, even in today's world, better predictors of recurrence than her2 status. A couple of things that he told me to keep in mind... Again, these are not absolutes, but just trends that he and I discusssed to help frame my thinking on all of this:
- Because her2 status is more aggressive it is typically diagnosed at a later stage (more lymph nodes involved, larger tumor)... which means that those patients are already at higher risk of recur due to those factors alone.
- Her2+ patients (diagnosed prior to her2 testing) who have never had a recur have no idea that they are her2+ (and neither do the stats reported for those periods)...
- It "seems" that more people who are her2+ have a recur because we are testing for it at recur time for the purpose of treating with herceptin and therefore we are hearing about many of the her2+ people ONLY at the point of recur. The people who visit this site are an excellent example of that... people who don't know they are her2+ because they've never had a recur, would have no reason to think to visit this site!
- Another reason that her2 BC appears to be more aggressive is because it is typically also ER/PR-, which is also a more aggressive factor (mostly due to a fewer treatment options). Those who are ER/PR+ have less recur, even if her2+.
- My cancer center has been testing for Her2 a lot longer than most centers because they were one of the first to participate in an early stage trial for herceptin and my onc told me that he has MANY patients who were her2+ at dx and who have never had a recur 5+ years later (including those who chose not to enter the herceptin trial or were randomized into the arm that didn't get the drug.)
-It is also a matter of simple mathematics.... on average, BC (all forms) will recur in 30% of patients. On average, her2 is positive in 30% of patients... Because we know that many her2- people have a recur, it is not mathematically possible for all her2+ people to have a recur.
-My onc also told me that another benefit (if you cna call it that) of her2+ disease is that it will typically recur early (due to it's aggressiveness) so the further we her2+ people get from dx, the lower our chances for recur... more so than her2- people.
- Lastly, the her2 factor is the most widely studied characteristic of breast cancer. Therefore, even for those who do have a recur, the possibility of a cure is most likely going to first be identified for her2+ cancer. Herceptin, while not a cure in matastatic patients, is already demonstrating the edge that her2+ patients have over her2-.
Again - none of these statements is absolute, just a series of likelihoods. Individual cases can and will always defy these trends. But they are trends, nonetheless.
With all of that said, what this means to me, personally, is that those of us who are identified as her2+ upon dx should do everything humanly possible to reduce the risk of recur. I entered a Herceptin trial and was randomized into the group that didn't get it. I petitioned the company and my doctor to give it to me anyway... and after much debate (due to the ethics of going off trial and NOT to the efficacy of Herceptin) he did, in fact, give it to me. I also asked him to give me Taxotere after AC, (instead of the recommended Taxol) with the Hercpetin as there was some research that says Taxotere is more synergistic with Herceptin than Taxol. I also take Lupron to shut down my ovaries (which some European countries believe is treatment enough for per-menopausal women) along with Arimidex, as there is some evidence that her2+ people are resistant to Tamoxifen. I also take Celebrex daily, as there is limited evidence that a Cox2 inhibitor (particularly with taken alongside Arimidex) may further reduce recur in some women. In addition, I take a number of supplements that have been approved by my oncologist. I had radiation instead of mastectomy because my surgeon and I talked it through and in reality, it is MORE aggressive than mastectomy. I sought out the newest form of radition, IMRT, as it is more targeted and I asked to have my collarbone area radiated, as well (which is not typical when you have less than 3 nodes+). I also changed my initial sugery date to be scheduled during the later half of my menstrual, as I read in Dr. Susan Love's book that there is evidence of greater recur risk when surgery is performed during the first of of your menstrual cycle (due to increased blood vessel creation during that time). My 1 year on herceptin is coming to an end in March and I am going to ask my oncologist if I can continue it beyond 1 year since we are off protocol already, anyway. I met with my surgeon recently for my 1 year follow up from surgery and he laughed and said that I was the most over treated person he had ever seen... I told him that I liked it that way!!
Sorry for the long-winded response, but I wanted to share my thoughts on this, as I have done a lot of research and given this a ton of thought.... I believe that being my own advocate has been the MOST important element in my treatment. I've personally changed the course of my treatment in a number of ways and I believe this is the best possible path for me.
I wish nothing but the best for all of you. I read this site often and I am in awe of the strength and courage of all of those here.
Love and hugs,
Lauren
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