Having Cancer Does Not Feel Good

breast-cancer-ribbon-2A few days ago the NY Times ran an article in their magazine entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. Everywhere I looked people were re-posting it, adding links to facebook, emailing it to me.  Yesterday, I finally got the chance to read it.

Orenstein takes on a few important topics…   The risk/benefit conundrum of yearly mammograms…  The over-selling of “early detection” as the answer to breast cancer…  Questionable over-treatment and fear tactics…  The unchanged death rates…  And the beyond ridiculousness of the pink ribbon campaign to raise awareness –  I’m pretty sure we’re all aware now.  Breast cancer is big.  It’s wrecking havoc.  We know.  Now let’s use that money for a real purpose, like funding research to find a cure, figure out the causes of cancer, or help metastatic patients live longer.  The messages in Orenstein’s article aren’t necessary new.  But it is nice to see the NY Times giving it press and especially nice to see Orenstein acknowledging the small and often overlooked percentage of us with metastatic disease.

I personally am very leery of frequent mammograms (and other scans for that matter).  I keep reading that the cumulative effect of radiation from regular mammograms actually increases the chances of getting breast cancer.  Kind of ironic, eh?  Just like Tamoxifen increases your risk for uterine cancer.  And breast radiation may cause lung cancer.  And Herceptin may cause heart failure.  Gotta love it.  It’s a constant battle of weighing the odds.  The benefits vs. the risks.

Since being diagnosed in November 2011, I’ve gone through more scans than I care to count and my body’s been subjected to endless amounts of radiation.  In my new approach to this disease I am now saying no to scans every 3 months (as well as to radiation treatment, Tamoxifen, and Herceptin).  When my oncology surgeon recently suggested I get a mammogram & ultrasound prior to my second reconstructive surgery I opted to skip the mammogram and just get the ultrasound.  I mean, when they do find something suspicious on a mammogram they send you for an ultrasound to further confirm anyway…  So why not just skip the questionable mammogram and go straight for the ultrasound?

It wasn’t news to me that death rates from breast cancer haven’t changed in the last 20 years.  While early detection may be finding more cancer, we’re still dying at the same rate.  How can that be good?  Seems like an obvious red flag that the current approach is not working.  While many people realize this, it really sucks that the medical establishment hasn’t caught on yet.   And while I truly appreciate the efforts of researchers who continue to understand more & more about the inner-workings of cancer and how it forms and grows, I hate that what comes from their brilliant research is just more drugs and toxic treatments.

I love Orenstein for giving a shout out to us metastatic folks.  Acknowledging the paltry sums of research dollars we receive.  The terror we often strike in our non-metastatic breast cancer sisters.  Our absence from “feel-good” breast cancer events.  It is important for all those diagnosed with breast cancer to know that no one is immune from getting metastatic disease.  Denial is not going to help you live longer.  Awareness, prevention, and action will.  I know you don’t want to think about it.  But cancer can come back.

Which brings me to the point we should all be thinking about.  Why did we get cancer in the first place?  Illness is our body’s way of telling us something is not right in our lives.  When I was diagnosed with Melanoma-in-situ (basically stage 0 skin cancer) in 2008 I woke up for a few minutes, changed a few things in my diet, started to eliminate chemicals…  But never went beyond that.   Never did the deeper soul searching.  Never figured out healthy ways to deal with stress.  Never took a serious look at what wasn’t right in my life.  My body was trying to tell me something but I wasn’t ready to listen.

So now, with metastatic breast cancer I am asking the big questions…  Where did this come from?  Why is it here?  What do I need to learn?  What do I need to change?  How can I use this as an opportunity to turn my life around, love myself more, and give back to the world?

Cancer is a very complex disease.  It requires a complex treatment plan.  Simply getting a mammogram or changing once piece of the picture doesn’t guarantee healing.  I can eat 100% healthy organic food and exercise every day but if I’m not dealing with my underlying subconscious fears, childhood wounds, dysfunctional relationships, financial problems, or my stressful & unfulfilling career then true healing may not ever happen.

I’m on an endless quest to figure out what’s broken in my life and find ways to fix it or make peace with it.

The battle is multi-dimensional.  Cancer is tireless and all encompassing.  We have to be too.

Peace.  – T

8 Responses

  1. Great article Terri, but I think the your last two sentences speak to me personally, a journey that seems endless. Thank you for always reminding me of what I need to reflect on in my life.

    • Hi Cindy! I think the endless journey is something we rarely speak about. Society expects us to just do treatment, get better, and then move on with our lives. If only it were that simple! Thinking of you… Hoping one day our paths will cross in Massachusetts. xoxo

  2. Thanks first of all for drawing my attention to the Orenstein article, which draws together and summarizes what for me would otherwise be many individual bits and bobs of information I’d never really systematically researched or sourced.

    There’s so often a trade-off involved in having knowledge — and in those moments when the gap between knowing and being able to *do* something effective about it *seems* unbridgeable, it is particularly frustrating. We swim about in a vast ocean of information and misinformation, and somehow must cope with the buffeting about we’re subjected to by it, finding practical ways of buffering the currents while reaching the countless decisions we make on the basis of them every waking (and dreaming) instant of every single day.

    Sending you affectionate fin-and-flipper-fluctuations from the Bedford Basin — swim on!

    Much love,

    John

    • Thanks John. I feel like so much of my life is lived swimming about in the vast ocean of information (and misinformation). It does take up so much of my time. And because I am so untrusting of most studies to begin with, it makes it all even more difficult to know what to believe. I guess nothing in life comes easy though, eh?

      Much love right back to you. – T

    • Thanks so much Donna-Lee. I do try my best to “keep it real”. And having this blog has helped me way more than I ever imagined. What started out as just a way to keep the family & friends informed on my treatment has morphed into something much more. And I never imagined how this tremendous community of support in the blogging world would help me heal even more. All the best… – T

  3. Your thoughts on the deeper causes of cancer resonate with me so much. I am stage 3, going through chemo now. I really don’t want to do radiation or Tamoxifen. It’s great to see someone with the courage to “just say no” to being a medical guinea pig.

    • Thanks so much for the support. It took a lot of time, research, and contemplation to say no to the doctors. It’s not an easy path. But one I feel is extremely important for others to know about. There are other options. You don’t have to do everything people tell you to do. Trusting yourself, your innate wisdom, and intuition is so important. I wish you strength and luck in your own journey – to do what feels right for you. And to come out healthy on the other side. hugs, – T

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