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Jul 30, 2009 12:15AM
, edited Jul 30, 2009 12:51AM
This discussion is a really good one, at least in part because we are trying to get across what has been documented, and asking questions about what we don't know, without taking it personally.
I wasn't able to understand what I needed to know when I was diagnosed, to be able to make an intelligent choice for my treatment. At that time, the trials for trastuzumab had not been completed, so treatment was CAF, CMF, or CEF, and I think maybe some AC. Aromatase inhibitors were only available for those with mets. Tamoxifen was the only drug available for treatment after chemotherapy. Trastuzumab was not recommended yet. Patients like me were being tested for HER2, but the results were not discussed with us because the trials were still in progress. The only "rule" was that chemotherapy was recommended for all bc patients with tumors over 1 cm, and in some cases could be considered for tumors between 0.5 cm and 1.0 cm. This rule was based on trials that are now rather ancient, when breast cancers were lumped all in a pile.
Because we all have cancers with so many different characteristics, it is really hard to get an understanding of what has actually been documented so that each of us can make a decision that fits our individual situation. I'm hoping our discussion will make the distinctions more obvious.
What is not recognized (because of the natural tendency we all have to base decisions on fear) is the difference between what has been documented and what hasn't in terms of chemotherapy, no chemotherapy, chemo with trastuzumab, and trastuzumab alone.
The trastuzumab trials did not document anything to support chemotherapy with or without herceptin for those patients who are hormone receptor positive and HER2 positive with tumors under 2 CM that are node negative. The reason I say that is because those patients were excluded from the trastuzumab trials. Right? Or not?
The second documented factor is that most HER2 positives are hormone receptor negative. So when considering trial outcomes where it seems as if HER2's benefit from chemotherapy, the benefit is for those who are HER2 if they are also hormone receptor negative, like Bluedasher and the majority of HER2s. Thus, because hormone receptor positives are a minority they are being swept into the belief that chemo is helpful to them "because being HER2 is more aggressive". Again -- keep in mind that the trastuzumab trials using chemo plus trastuzumab excluded the hormone receptor positive patients under 2 CM and node-negative. I'm talking about proof, not fear.
These are patients who may benefit from trastuzumab alone. However, there is no proof of that because no adjuvant trials have been done to show whether trastuzumab alone is effective for node negative hormone receptor positives under 2 CM.
Please do critique what I am saying. It is hard for me to know that I chose chemotherapy that provided no significant documented advantage to me because of the damage it has done to me, and in addition I have never had trastuzumab. I had CAFx6.
Bluedasher, another point I would like to discuss is that when a group of patients who are marginal at best in terms of benefitting from a therapy like chemotherapy, we tend to "think" in terms of the chemotherapy itself, alone. However, it isn't given alone. It is usually given with other support drugs, and those drugs can be detrimental. For example, almost all patients receiving chemotherapy get steroids with the chemotherapy. For many, the steroids bring weight gain. The chemotherapy is intended to shut down hormonal production, and so that causes these patients to have lower testosterone levels. The steroids cause breakdown of muscle tissue during the long period of disability and weakness, and because of having far less testosterone from that point on, there is less ability to rebuild muscle tissue after treatment. Chemopause encourages weight gain. Weight gain is a risk factor for recurrence. Thus, although the chemotherapy was given and intended to prevent recurrence, at the same time the drugs given with the chemotherapy contribute to recurrence. For those whose tumors are under 2 cm and node negative, chemotherapy does add to their risk -- not only in terms of weight gain, but also in terms of developing some additional potential for leukemias.
The added risks don't stop there. In addition, chemotherapy often includes the administration of blood boosters, especially for dose-dense treatments. These drugs have risks. They can be essential -- but if breast cancer patients only benefit marginally from chemotherapy IF AT ALL, how essential is this additional exposure to blood boosters for hormone receptor positives under 2 cm with negative nodes?
The added risks don't stop there. In addition, the combination of chemotherapy with radiation increases the risks as well. If one has just the radiation and doesn't add the chemo, the risks are lower.
The added risks don't stop there. Those who have chemotherapy generally go on to be tested more frequently with exams that include more radiation, such as CTs and bone scans, because of physical complaints brought on by the discomforts brought on with chemotherapy, and the inability to distinguish between chemo-caused physical discomfort and other causes for physical discomfort. For example, often CTs are used for patients whose labs (done because of chemotherapy) are abnormal.
One edit here -- In addition, chemotherapy adds significantly to the potential for osteoporosis and osteopenia, which are causes for bone fractures; and we know that bone fractures are a risk for earlier death for some patient groups.
Yes, there is still the need to shut down hormonal production for hormone receptor positive patients, but that can be done surgically and with other drugs that don't require all the problematic treatments that go along with chemotherapy.
Using documentation from trials that are based on hormone receptor positive patients staged higher than 2 cm plays more on the fear factor than truth.
Please do point out any blind spots that I have.
12/3/2001, IDC, 1cm, Stage Ia, Grade 3, 0/1 nodes, ER+/PR+, HER2+
01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
03/12/2002 Adriamycin, Cytoxan, fluorouracil