Recurrence, an Oncoming Train?

(Disclaimer: Many of you know that I just visited my oncology team last week- Just so you know, all tests came back normal. I continue to have no evidence of returning disease. I am feeling happy, humble and very grateful for being in this place in this moment.)

I have thought of western treatments like a train for a while now.  You board the train and are whisked away to the next destination along the tracks.  Recently it occured to me that the thought of recurrence feels a bit like an oncoming train. There is a certain inevitability implied in the world of western treatments when you are diagnosed with advanced disease.  Outliers don’t make sense.  In the cancer railroad world view cancer keeps on rolling down the tracks regardless. I find myself wanting to learn to live with a bit more uncertainty. To actively learn how to be more present, and to honor mystery. To travel a bit lighter, more like a Hobo in cancer land then a passenger.

I decided a while ago that if I am going to die from cancering so be it, if I die from something else? So be it. Either way I am 100% certain I will die- and for right now I do not know how.  What this means on a daily basis is that I remind myself that I am healthy until proven otherwise, and that it is up to me to actively do what I can to honor my body and tend to my health. All of the many statistics and models of recurrence aside, we just do not know, really, why some 20-35% of those diagnosed with breast cancer die of it. Acting as if I will not be one of them may on one hand be hubris, and on the other, perhaps, it just might be a happier route to travel until the end.

In a sense post treatment life is a bit like waiting for a train that may or may not come..

Regardless, as my oncologist is always reminding me, all statistics aside, recurrence is just like pregnancy, you either are or you are not. There is no 53% cancering. Those with a recurrence are 100% cancering, anything else is just conjecture.

Not knowing with certainty what causes recurrence does not mean that it is random. I believe that what it does signify is that we do not have a big enough perspective to understand it.  I am guessing that some of the contributing factors may not even be on the table for consideration. For instance addressing emotional trauma,  pre-life soul agreements or other spiritual factors.  No one is keeping track of those things. Because even though they feel very real to many, they admittedly are also way out in wuwu land for others.  What causes cancer, what causes recurrence after treatments remain big unknowns.

Lets face it, even doing everything they want does not provide any guarantees.

“I just want to make sure that if you have a recurrence that you will be okay with having not done everything possible to avoid it.”

With this in mind I know that jumping off the standard of care train is not without potential consequences.  Each time I have decided against some treatment namely:

  • post mastectomy radiation
  • Zometa after ovary shutdown or removal
  • Tamoxifen (I did take it 2.5 years)
  • The only possible replacement protocol for Tamoxifen after I stopped taking it – which involves shuting down my ovaries and taking an aromatase inhibitor.

I am reminded that I am choosing to live with the increased risk my choice implies. Each time I have disembarked from the standard of care train I have been verbally reminded by someone in my care team that. “I just want to make sure that if you have a recurrence that you will be okay with having not done everything possible to avoid it.” Which I suspect is code for, “I’m uncomfortable in this uncharted territory, and by agreeing to allow you to disembark the train, I need to distance myself from the outcome.” 

Sometimes it seems like my doctors see my choices as a bit like tying myself to the tracks with the recurrence train headed my way.

I consider myself to be making informed choices. I literally read every study I could find on radiation post mastectomy, and every study that included data that included neoadjuvant treatments and which tracked pCR.  I talked to five different doctors. I am convinced that I am making the best choices for my specific situation as an outlier.  The reservations that some of my western doctors/nurses have expressed are part of their performing their due diligence. Thankfully they do not find the need to badger me. . . much.

The standard of care protocol for women diagnosed before age 45 offers a selection of interventions. Because women diagnosed young simply have a longer window of opportunity for recurrence, than someone diagnosed at say age 80.  Plus cancering tends to be more lively in younger women- more likely to be classified as an “aggressive” subtype. Most breast cancering subtypes are hormone positive, and clearly women who are still ovulating have higher hormone levels.  In their model I entered the scene at high risk.

Nonetheless it is a big switch for me mentally to associate healthy hormone levels with risk of death.  I just can’t grok the idea that I will be “healthier” if I take invasive radical interventions to shut down a natural process. Which is what motivated me to bypass the ovary shut down option.  Especially since I had the unexpected pCR, pathologically complete response to treatments.  It seems like it is time to switch tracks from “fighting cancer” to living life. Not to take the route of both expecting and looking for trouble.

So if I know that I am not tied to the tracks,  and I am choosing not to be a passenger on the western cancer treatment train at this moment, where does that leave me?  Somewhere in uncharted territory.  Thinking about all of the people who have worked so hard to construct the cancer railroad system is very humbling, because truly that system does a lot of good.  Still I can’t help but consider other ways to travel.

Though I am not really following protocol beyond imaging and blood tests at this point, I am pursuing other supportive options. Specifically Naturopathic and Traditional Chinese Medicine. Which includes; supplements, herbal formulas and acupuncture. I also see a lymphedema specialist regularly. The way I see it, if I have some lingering micro metastases hiding out somewhere in my body ready to jump, my goal is to have my body be as balanced, strong and vigorous as can be. I need my cells healthy enough that they can talk any cancering cells off the ledge so to speak.

If I opt out of everything Western medicine has to offer, then attending to the challenge of cultivating health is a means of doing my own due diligence.  My treatment choices have not been foolhardy, flippant, or fear based.   They in fact are helping me to live with less fear than I would have if I had taken on more that Oncology West World has to offer my specific situation. Which is notably off of their charts and tables. I am part of the first wave of HER2+ patients to receive Perjeta and Herceptin prior to surgery. Looking at data from the 1980’s does not apply to my situation. (Such meta analysis of data including data from  1960-2000 still very much informs standard of care.)

I am fierce advocate for people being proactive in their own care. I know that a certain amount of fierceness connects to better outcomes. Read Bernie Siegel’s books describing what he calls “Exceptional Patients.”   Whether Cancer is the train, or Western Treatments for Cancer are the train, it feels important to me to be a bit more nimble than being a passive passenger. Even knowing that choosing to be a bit of a hobo carries with it risks.

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Follow up care for breast cancer is standardized just as is everything else about oncology care in America.  The timeline for Standard of Care western treatments looked like this for me:

  1. Primary treatments- the First Year Neoadjuvant model.
    1. In my case neoadjunct therapies, which means prior to surgery, included:
      1. Chemotherapy: Carboplatin & Taxatere
      2. HER2+ Targeted Therapies: Perjeta, Herceptin
    2. Surgery – For me: Modified Radical Mastectomy with axillary node dissection
    3. Radiation Therapy  (I opted out; see my post  about my circumstance here.)
    4. Herceptin infusions triweekly after surgery, a total of one year of treatments.
    5. ER+ Hormonal Therapy: Tamoxifen started after surgery.
  2. Follow up Care -The First Five Years
    1. Continue Hormonal therapies for 5-10 years for ER+ cancers (I did 2.5 years.)
      1. May include ovary shutdown or removal to induce menopause
    2. Physical exams
      1. Every 3-6 months -for first 3 years post initial treaments
      2. every 6 months to once a year- for next two years
      3. annually thereafter
    3. Blood tests on same schedule as Physical exams in certain circumstances may include:
      1. Complete Blood Count CBC
      2. Tumor Marker tests:
        1. Carcinoembryonic antigen measurement(CEA)
        2. CA 15-3 measurement (CA 15-3)
    4. Mammograms Annually
    5. Other imaging as warranted by symptoms may include:
      1. X-rays
      2. Ultrasounds – especially liver or Uterus
      3. CT or CAT scans
      4. MRI
      5. DEXA Bone Scans
      6. PET Scans
  3. Rest of your life…
    1. Physical exam annually
    2. Mammagram annually
    3. Additionally imaging in response to any symptoms of Recurrence.
Perhaps by being an outlier I am more like one of the early women engineers?

 

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