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Jul 26, 2009 01:41PM, edited Jul 26, 2009 02:02PM
mmm5, watts76, cookie2009
As an oldtimer I think maybe a history lesson might help.
When I was diagnosed in 2002 as HER2+++, the trial in the US that was being done to show whether trastuzumab helped or not hadn't reached conclusion so it wasn't being recommended as a standard part of treatment for anyone who was HER2 positive at that time.
The reason there still is confusion about what to do for the smaller HER2 positive tumors is because right or wrong, in creating the clinical trial, they limited the people who could be in it to those who had EITHER a tumor over 2 cm OR had at least one positive node. That meant that when they completed the trial, there was no data to base a decision on for those of us with tumors that are less than 2 cm AND no positive nodes.
Ever since then, the confusion has continued, with fear quite naturally being a strong motivator in a situation where they have continued to not do trials to cover the people caught in this gap. If they had included smaller tumors in the trial we would know more about whether we should be doing chemo plus trastuzumab, or just trastuzumab, or what. What is most unfortunate about this is that they have come up with a sloppy "scientific" recommendation that for those of us caught in the gap, trastuzumab should be combined with chemo to work "best" -- whether that is mostly true for more advanced stages or not, rather than for early stage bc -- yet by playing it safe with that recommendation there is no protection being applied against the known toxicities of chemotherapy itself.
One also needs to understand that the majority of HER2 positive patients are ER- and PR-, and chemotherapy works best for those patients, but distorts the perception of what works "best" for "HER2 positive" patients in favor of chemotherapy.
It is important to note also that people who choose chemotherapy often claim or assume that the chemotherapy is "keeping them NED" when in reality it may be providing no coverage against recurrence for them at all and only provided toxicities. No one who makes that claim can say for sure scientifically that chemotherapy is what "worked", or not.
What would make the most sense would be to have a trial for early stage HER2 positive bc using just herceptin with no chemo, so that we could establish whether or not insurance companies (who are now paying lots of money out for the chemo treatments and all the resulting problems and support that goes along with it, the steroids, the antinausea drugs, etc.) could pay for the heceptin for us instead.
Hope that helps to give you some idea how limited the knowledge base is for the current recommendations, pro OR con.
Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)