@Linn65 - I will look into it with AussieGirl's help, but my sister is coming over for a massage right now. I just typed this up and was copying it over when I saw your post.
@Sarah - what was your age at diagnosis with DCIS? I am curious about the follow up you received and how was the subsequent cancer discovered? Was your cancer hormone receptor positive or negative?
@Roz - AussieGirl points out the gap between research medicine and mainstream medicine. Most of us do not have access to the pathology of our cancers in such detail. I did notice the Spanish study examined Her2 subdivided into Her2 enriched and a new designation Luminal-Her2.
Quote:
The information provided from the study of the patterns of recurrence in early breast cancer would benefit to the patients in different ways. In this regard, our results could generate several hypotheses that, if confirmed in prospective randomized trials, would have noteworthy practical value. First of all, the surveillance after initial treatment could fit to the expected recurrence pattern depending on each intrinsic subtype. But more importantly, the adjuvant treatment could be tailored more accurately according to each intrinsic subtype.
Patients with tumors with high proliferation rate such HER2-enriched or basal-like would benefit from more aggressive chemotherapy schedules (e.g. dose-dense). Such type of chemotherapy could avoid some of the recurrences appeared during the first peak. Also in these cases with high expression of proliferation pathways, it could be especially useful the treatment with novel inhibitors of cell cycle (e.g. palbociclib). In addition, those other patients with Luminal-HER2 subtype could benefit from a second treatment with trastuzumab in order to decrease the second peak of recurrences.
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http://her2support.org/vbulletin/showthread.php?t=59367
So, as cancer patients, we run into a wall of “Standards of Care” in the medical field – as compared to what we wish for, more subdivision and personalization of treatment. I’m not blaming physicians for this – as the hospital administration, liability lawyers, insurance companies, pharmaceutical companies, and a multitude of reasons have brought us to a medical system that turns like the Titanic. The iceberg of cancer looms ahead, difficult at times to detect, with the largest danger still hidden under the surface of what we can see.
The point: even if you were to know more about the pathology of your own cancer – it wouldn’t affect your treatment options with mainstream medicine. We could look for a clinical trial, but most are focused on initial treatment, and recurrence treatments. Slamon is working on ER positive treatments, but I don’t know how far he has drilled down into subtypes. I think most research remains in the theory stage on subtypes and recurrence patterns. Knowledge is power, and you can use what you learn to seek alternative treatments, diet & exercise changes, etc to work for a better health outcome.
@AussieGirl, thanks for letting us challenge you during a suboptimal time (chemo) and for taking the time to share the research and your experience with us. I pick on your chosen profession (physician) quite a bit, but I love the fact that you are a Pathologist. I think many of us on the board would love a field trip to visit you, your microscope and some very interesting cells! I am skeptical of some numbers – such as the pure DCIS recurrence rates. I think the industry does a good job of tracking initial diagnosis and deaths – but the recurrence rates do not make sense to me.
Another thing I experienced, and perhaps Sarah too – the follow up at an earlier age with symptoms of cancer or pre-cancer was inadequate. I wish I had known the importance at age 37 of follow up. My nurse made me feel like such an idiot for being concerned about nipple inflammation. Six years later I had 2 Pagets lesions that was only detectable by MRI, and thankfully an IDC lesion detectable by Mammogram.
Back to the DCIS discussion . . . I was focusing more on the importance of DCIS with a diagnosis of IDC. Standard thinking might be faulty on the DCIS component – the IDC cells are dead, the DCIS still lives (barely). Is surgery & treatment affecting DCIS in a negative way to affect the cells to adopt a more aggressive function?
Neoadjuvant treatment is changing the way we already look at cancer. It is exciting to see the information that is coming from more emphasis on pre-surgery treatments.