Wednesday, January 09, 2013

Reflection on four years

It's exactly four years since my breast cancer diagnosis in early January 2009, and I thought I'd take a moment for some reflection.

Since that time, I've endured two surgeries, radiation, daily doses of tamoxifen, taken part in a study that made me quite sick, dealt with multiple doctors and therapists in order to recover from that, joined the board of a breast cancer organization that had a good mission but bad karma, endured that for two years and then quit, and now...I'm not sure what I will do next. I have a scar on my breast and one under my arm from the sentinel node biopsy, tiny black "tattoos" on my torso from the radiation treatments, I'm in pseudo-menopause from the tamoxifen (hot flashes, putting on weight), and as far as I can tell I don't have breast cancer anymore. Although it could come back, and that's a fear that I have to live with for the rest of my life.

I am still firmly convinced that chemicals in our environment are causing the increase in breast cancer, in other cancers, and in all sorts of diseases and syndromes (ADD, ADHD, autism spectrum diseases, autoimmune diseases, etc.). The evidence points toward this. But because it is difficult to prove that this particular exposure causes this particular cancer or disease, most people just don't put two and two together.

On the flip side, I still think that many, many women are over-diagnosed with breast cancer and then over-treated (you can read about it here and here). That is to say, a small tumor is seen on a mammogram and because we don't have the capability yet of determining if this cancer will grow or stay put, it is treated with guns blazing (surgery, radiation, chemo, and even prophylactic mastectomy) even though it is probably not necessary.
"For mammography screening to work, it must take women who are destined to develop late-stage cancers and find them when they're early-stage," [says] Dr. H. Gilbert Welch... "Unfortunately, it looks like screening has had very little impact on the rate at which women present with late-stage cancer." 
In other words, all these breast cancers that we are catching early don't mean that women aren't progressing to late-stage cancer. It just means that more women whose cancers wouldn't have ever progressed are being over-treated. There are still plenty of women who are treated early and still go on to have metastatic disease. And people die of metastatic disease, not of breast tumors.

There are some organizations that I have found helpful in this journey. Breastcancer.org is a great place to go for solid information. I like using the discussion boards, too, although I find that the women there tend to opt for over-treatment instead of more conservative approaches. Breast Cancer Action is a great advocacy organization, and I like Breast Cancer Fund as well although I feel they are a bit too sure of themselves (i.e. ahead of the science) about the links between consumer products and breast cancer. Silent Spring is my favorite scientific organization, doing important research into the actual causes of breast cancer with an eye toward prevention.

I know lots of people who have had breast cancer, including some very young, and some who have died. I know some whose breast cancer metastasized and they don't know what will happen next. I know someone with ovarian and uterine cancer, who is in remission, but will never be cured. I know someone who died of lung cancer when her kids were teenagers, and she never smoked or had other risk factors. There is way too much cancer happening to people....way too much. And we still have so much to learn about cancer.

I'm grateful for my health, but angry about certain aspects of my experience, and even angrier about all the cancer that is happening around me. And I don't know exactly what to do about it.

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