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Jul 15, 2012 03:45 AM, edited Jul 15, 2012 03:52 AM
The hard part is... we can never be sure which group we're going to end up in after treatment. Are we going to end up in the disease-free survival group? Or the recurrence group? Are we going to end up in the local recurrence group? Or the distant recurrence group? Statistics can't tell us that; they can only predict our odds. Studies can't tell us that; they only report on trends observed in small, controlled study groups, which don't always translate the same way in the general population. Unfortunately, much of cancer treatment today is hit- or miss, and hope-for-best.
And ALL breast cancer treatment is risky. Every step of it. Lumpectomy+radiation has its risks. Mastectomy has its risks. Breast reconstruction has its risks. Chemotherapy can kill or save lives. Targeted therapy has its risks. And nothing can predict how it's going to affect an individual woman. Educated guesses can made, but no definite conclusions can be drawn. We have to grapple with the fact that treating breast cancer can be just as dangerous as the breast cancer itself, and we don't know how those risks are going to play out.
For example, in 1968 my mother had a prophylactic mastectomy for a lump that even the pathologist couldn't determine was cancerous or not. Because it was the 1968, she, also, had a complete axillary node dissection. All the tissue came back negative for cancer and she received no follow-up treatment. No chemotherapy. No radiation. They didn't have targeted therapy. It was decided that she, probably, didn't have breast cancer - especially since she remained cancer-free for the next 40 years - but, since survival rates in the 1960's were so poor, her treatment team decided to err on the side of caution. Was the mastectomy necessary? Probably not ... but, then, hindsight is always 20-20.
Despite the complete axillary node dissection back in 1968, my mother never experienced lymphadema. Not one problem. Ever. And, yet, forty years later - after presenting with and early-stage IDC that her oncologist deems to be her "first-ever primary" - a sentinal node dissection, which, also, involved a Level 1 sampling of her axillary nodes has left her with a whopping case of lymphadema, that she is still struggling with. Go figure! The side that has no lymph nodes left, still gives her no problems. The side that has had only five lymph nodes removed has left her with an arm that is, permanently, swollen and problematic. And, yet, I, also, had Level 1 axillary clearance + regional node radiation to that side (which increases my risk for lymphadema) and, so far, nothing.
So, for what it's worth, (warning! MY PERSONAL OPINION ONLY!!!) I've come to the conclusion that all the studies, all the research, and all the knowledge that we've gained, thus far, in the war against breast cancer can, often, confuse- more than help in our personal decision-making processes. For every solid piece of information we have managed to uncover about breast cancer, there is another piece of information that contradicts it. Studies can, sometimes, provide valuable information about trends, but they are, often, so limited in scope and conducted among such, small controlled groups that the conclusions drawn from the data can be very misleading when interpreted out-of-context.
Our treatment choices - while they seem so numerous these days - are, really, quite limited. Some great strides have been made in understanding certain aspects of breast cancer, but they haven't, yet, translated into anything concrete in the way of prevention or treatment. And I find that so sad and frustrating. What is comes down to is that each one of us feels compelled to inform ourselves to the best of our ability; often, refusing to accept the educated opinions/experience of those professionals who are in the best position to help us. I wish I had a dollar for every time I've read on these boards about someone who is frustrated-, angry- and upset that her oncologist has disagreed with the research that she had done, so she is searching for a new oncologist, and, yet, never even considers the possibility that her information/research is faulty or, even, blatantly incorrect. The blame is, usually, put on the oncologist/treatment team for being "out-of-touch", "incompetent", "misinformed" and the hunt is on to find an oncologist who will agree with one's opinions.
So, I find it very disheartening, that so many women are so militant about the choices they've made that they, frequently - and, perhaps, unknowingly in their desire to help others - run roughshod over other's decisions, and only add to the fear- and anxiety being experienced by newly-diagnosed women. As Beesie said a few "pages" back... this doesn't help. And, after spending months on this board - and having, admittedly received so much support along-the-way from so many women - I've come to the conclusion that: 1) talking to other women who have gone through similar experiences can be helpful in an emotionally supportive sense; but 2) the best people to consult about your treatment choices should be your oncology treatment team. We, as breast cancer patients, come loaded with a whole lotta emotional baggage and we're not always objective about what we've - personally - been through.
Yes, sharing our emotional- and treatment experiences can be extremely empowering and informative for other, newly-diagnosed women, but we are not scientists or oncologists. And, although, I've seem many, many very good- and objective discussions on how to interpret the results of various studies, I've, also, seen far more discussions that are self-serving and, frankly, terribly misinformed. Yes, we should remain up-to-date with what's going on with breast cancer treatment developments. But we, also, need to be responsible about what we promote-, support- and say to others.
In closing (and I know this will be an unpopular statement, but - again - I stress that it is MY PERSONAL OPINION ONLY), I would put it out there that, perhaps, in some situations, women should have more faith in their treatment team and use the study/research information that they uncover to open- and direct their discussions with their treatment teams, rather than take said studies/research information at face-value to make such important, life-altering choices. We, all, have our biases and, I feel, that navigating our way through the quagmire of outdated data and misinformation on the internet is too full of pitfalls and hidden dangers to undertake on our own.
"... good girls never made history ..."