On Getting Cancer and Getting Through It

[A letter to a cousin.] Just sitting with my Saturday morning Java and reading the papers. A pleasure at the end of a week. I’ve been very conscious that it’s taken me a while to write to you about my thoughts on getting cancer and my choice concerning treatment. I know you’re still reeling from losing your mother to cancer. And that you’ve been exploring whether alternative treatments might have helped or would be an option if you were to develop cancer. The New York Times Magazine this week if devoted to Cancer. And it’s spurred me to gather my thoughts and write to you.

On Getting Cancer

This article in particular, caught my eye... On the theme of 'can we avoid getting cancer'... Here’s a quote that sums it up:

"Many cases of cancer are preventable, studies show, but this research has inflamed as much as it has assuaged people’s fears."[1]

The study discusses four risk factors within our control for many cancers: 1) no smoking; 2) no more than moderate alcohol consumption; 3) about 150 minutes of exercise a week - less if it's intensive; and 4) have a body mass index below obesity level. I stack up pretty well on the four factors: I stopped drinking four years ago (to control migraines), started golf five years ago (and walk the course), dropped 10lbs, and I’ve never smoked. I also have a low-sugar diet and avoid toxic glucose/fructose (the stuff that’s used in soda and lots of other places). But, I developed breast cancer. Unlucky or something else?

Well, the columnist also pointed out a study that found that, still, “A large percentage of cancers tend to be due to mutations that occur during DNA replication during cell division” rather than a response to environment or genetics.[2] And other studies have concluded that breast cancer is one of the least preventable on this “four factor” approach. Apparently, only about 4% of breast cancer seems to correlate - even though a lot of the advice on lowering breast cancer risk focuses on just those things. That said, research does appear to indicate that walking a hour a day can reduce breast cancer risk.[3] The issue I have with that is that many of the people I know who have had breast cancer were physically active. So, the best but unhelpful answer seems to be: “we don’t know what causes breast cancer”.

Getting cancer certainly set out a search (a speculation) about why I developed breast cancer. I’ve identified some potential triggers: age-related hormonal changes (estrogen and progesterone) together with too much work-related stress over a period of several years. But at the time, I wasn't thinking 'oh, here I go, triggering my cancer risk'! I thought I’d only developed migraines. I tried to find ways to manage things. Meditation and gratefulness practice. Eliminating alcohol and chocolate; cutting back on screen time later at night. And I’d been doing quite well until some really awful work stress overcame me. But, even here, I'm speculating about triggers or causes (hormones, immune shock from stress). Was it a trigger? Who knows.

What my diagnosis has done is make me reflect on my choices. If it could do it over, I think I would have made very different work choices that placed my good in the centre not the good of the organization. I would also have worked less but was driven by the sense that I was making a real difference and contribution in my field. God knows, growing up (and training for field hockey by running outdoors) in Christchurch when there were still coal fires in the winter blanketing the city with smog, might have had some long-delayed effect. Or coming from an extended family with way too much cancer sprinkled throughout and thus, perhaps. having a predisposition for mutations in DNA to arise over time/cell division.[4]

Not a Matter of Blame

Healthy vegetarians, like my colleague MA, get cancer. My friend MD, who ran marathons and was the fittest person on her office medical check-up, got cancer. My mother drank a lemon, honey, cayenne pepper drink at breakfast for much of her life. She believed in the cosmic consciousness and saw naturopaths. (But she hated salads as any good New Zealander of that generation!). Other people we know eat lots of sugar and rubbish food and live into ripe old age. My father drank and smoked; got throat cancer and recovered (although lung cancer caught up with him 25 years later).

I think it boils down to one good rule: it makes no sense and does no good to blame yourself or others' for getting cancer. Stigma and judgment do no good. They certainly don’t protect you from getting cancer.

More likely, the search for reasons (and hence control) likely correlates to discomfort with the alternative: “Human beings don’t want to hear that cancer is an unfortunately unavoidable consequence of being made of cells that replicate their DNA imperfectly over the course of our entire lives. There’s an inherent hostility to any results that conclude anything other than that we can prevent most, if not all, cancers if only we understood enough about cancer and tried hard enough.”[5] We can do all we can, but still get cancer. Bugger.

Choosing Science-Based Conventional Treatment

By sundown on January 22, 2016, I had a good idea that I had breast cancer even though biopsies were to come. I was soon faced then with the question: what sort of treatment regime would I be offered and what would I choose?

This immediately brings me back to the basic point (realization): there is no such thing as a monolithic ‘breast cancer’. Everyone has a variation of type, progression, hormone responsiveness or not and ultimately, staging. A very early cancer can be treated with surgery alone. More advanced cancers need a wider repertoire. Breast cancer has had huge resources directed to it with an activist patient group pushing (women). A lot of research and clinical trials have been done or are underway. New treatments have been developed for different situations.

I'm grateful that my cancer was found when it was. I'd have liked to find it 6-9 months earlier of course! Given my diagnosis (stage IIB) and the tests confirming that the cancer hadn't spread beyond one or two lymph nodes, I was still ‘early stage’ (although at the tipping point to life-threatening. My breast cancer was highly estrogen responsive. I fit into the most common profile of breast cancer.

I’d always wondered what I might choose 'if' (not when) I got cancer. In the end it was easy. For me, there is a very strong chance that regular treatment will root out this cancer. Surgery will remove the tumour and positive nodes. The chemo will (and is) shrinking the tumour and clearing out the micro deposits that we expect have been spread through my body. I expect that the cancer will be removed. And, I am hoping that it won’t recur (at all or at least not for a long time).

And that stated, I have had to face the other part of the science: “Cancer is hard. Real hard. It is also hundreds of diseases, not some monolithic disease.”[6] Moreover, a few cells left behind + time passing = risk of it coming back.” If it recurs somewhere else or spreads to organs or lungs, then it’s more or less game over right now. Sobering for sure. And an invitation to live life with full appreciation for each day, but one day at a time. Not something I wanted in my life. In fact, something I was sure I was going to avoid. And didn’t.

Alternative and Integrative Treatments

These two things may not belong in the same section, but here goes. I’m very hesitant about the results of refusing ‘medical treatment’. Both my brother, Craig (who died at 22 of testicular/lymph cancer), and my mother (who died at 64 of colon cancer which had spread) refused chemo. Craig relied on faith healing which didn't work out too well. Mum knew she was in serious trouble and that treatments wouldn't have time to help (she died 6 weeks from diagnosis). Bad outcomes. My father had throat cancer at 56, had surgery and radiation and lived another 20 years until lung cancer (and 'palliative' radiation) got him (he was a life long smoker and drinker).

Alternative treatments which reject conventional standard of care haven’t worked out well despite internet promotion. I've studied legal cases where young people have refused chemo including recent cases here involving Aboriginal kids and a desire for traditional healing approaches. They've all died. I see advocatory for alternative treatments as predatory exploitation of vulnerable people.[7] I think that cancer creates such fear in us (including fear of chemo) that we can become vulnerable to 'nicer' sounding alternatives or miracles. I have no doubt that in 50 years, chemo will be a relic or substantially transformed in light of the legions of very bright scientists and clinicians working to better understand and treat the scourge. In the meantime, cancer treatment is simply hard work for cancer patients.

All that said, I think I see a place for complementary or integrative care. My good friend Nicole has Stage 4, inoperable colon/rectal cancer. She’s integrating complementary medicine along with chemotherapy. She’s a chemo-sceptic who has embraced integrative care. She’s responded well to chemo so is balancing a menu of both approaches. And she is participating in a large Vitamin D clinical trial which is showing great promise as a complementary treatment. Even so, there are flags about the extent to which integrative or complementary care is science-based and consistent with conventional treatment. It is also expensive: supplements, high-dose vitamin C infusions. It’s not clear it does very much at all.

In my own way, I’ve researched side effects and tried to integrate a range of mitigating strategies. Some have worked; others less so. The ‘main event’ in all of this has been facing an aggressive chemotherapy regime.

I'm researching options for natural supports/options to keep me well after the treatments. I've met and talked to many women, now in ripe older age, who've taken them and are living long and well. But I'll also add some of the 'miracle herbs' like astragalus. I'll return to including lots of turmeric (smoothies, curries). I'll explore taking a drug metformin which a noted cancer researcher, Warburg, advocated,[8] and which is being studied (with equivocal findings).

My Treatment Regime

Given that my cancer is serious – technically ‘early’ stage but has advanced locally to at least one lymph node, I have been offered what I call ‘the full meal deal’ – tasting most of the conventional treatment menu. Start with chemotherapy (6 months), then surgery to be followed by a course of radiation (25 sessions). I’ll go onto a hormone blocker (letrozole or Femera) for as long as I can tolerate it – ideally more than five years. I’ve been treated to a range of diagnostic tests: I’ve had needle core biopsies, a PET-CT Scan, bone scan, bone density scan, ovarian ultrasound and an MRI. My blood has been collected and analysed regularly. I’ve waited in many waiting rooms (and know why its called a waiting room now).

Handling Chemotherapy

A factor very much in my favour is that, other than the cancer I am robustly healthy. As a result, have been able to handle the treatments fairly well.

One thing I've been surprised by is how 'humane' chemotherapy has become.[9] I've realized that I had all kinds of fears about it. Thought it was barbaric. Toxic. Shattered a person. Nausea, loss of appetite and taste etc. I had a friend who talked about having to put ice gloves on her hands and feet during chemo. For some reason, that seemed just too much to me. Now, I realize that it's is just for some drugs and is meant to protect capillaries in hands and feet. And is no big deal at all. Luckily I'm not on that drug.

I haven't had nausea. Can still (four + months in) taste food and eat normally. Not everyone is as fortunate as me, but I know from talking to others that the side effects can be managed much better now, for most people. I've also been doing lots of complementary and natural things to manage side effects from nails to feet care. That said, I'm fatigued. I have no stamina left. I am being hit with low white blood counts from the chemo and, as a result I am having to change how I live (no crowds, not around anyone who is sick, washing hands etc). I'm making beef bone broth and drinking lots of it in the hope (intention!) of getting my counts back up.

And chemo will be over soon enough – its temporary, its ‘this spring and summer’.

Facing My Fears and Healing

Over the years and the losses from cancer in particular, I became almost paralysed from my grief and fear and unable to reach out and support friends who developed cancer.

One of the 'terrible gifts' of my current experience has been to realize that I am the same, ordinary person as before getting cancer, not transformed into an object of pity or to be shunned from fear.

My reflection is that we always think the worst when we hear that someone has been diagnosed with cancer. And I think we want to somehow insulate ourselves from our own mortality or vulnerability to the same fate. It feels scary to be around cancer (and thus around a person with cancer). My own hang-ups are being broken down by receiving so much love and practical support from so many people in our circles of life and work. I hadn't expected it or I’d thought it would be forced and uncomfortable. It hasn't been.

I see massive changes on the horizon for me around work (less) and money (less) and stress (less). I hope that there will be more volunteering and caring. I want there to be more laughter and relaxation (even though that may mean a personality transplant as I've always been so driven). Exercise (more). Practice self-compassion and kindness. Try to make the best of what has unfolded and engage with what’s to come (unknown).

We’re here to love one another, enjoy one another's gifts and to help one another. So I think weirdly, that getting cancer is part of healing my whole person and salving my grief in this life.... It's a strange old journey….

Love,

[1] Aaron Caroll, “Helpless to Prevent Cancer? Actually, Quite a Bit Is in Your Control”,

http://www.nytimes.com/2016/07/06/upshot/helpless-to-prevent-cancer-actually-a-lot-is-in-your-control.html?smprod=nytcore-ipad&smid=nytcore-ipad-share.

[2] See for example: "Breast cancer risk lowered by walking 1 hour a day" reporting on an American Cancer Society study. http://www.cbc.ca/news/health/breast-cancer-risk-lowered-by-walking-1-hour-a-day-1.1894929

[3] C. Tomasetti and B. Vogestein, “Variation in cancer risk among tissues can be explained by the number of stem cell divisions.” (2015) 347:6217 January Science 78-81.

[4] https://www.sciencebasedmedicine.org/is-cancer-due-mostly-to-bad-luck/

[5] Ibid.

[6] http://scienceblogs.com/insolence/2013/10/30/so-chemotherapy-does-work-after-all-revisited/.

[7] I’m particularly perturbed by advocacy based on “The Truth About Cancer”. See informed critique here: http://scienceblogs.com/insolence/2016/04/19/another-young-woman-with-cancer-lured-into-quackery-by-ty-bollinger/ and http://scienceblogs.com/insolence/?s=%22the+truth+about+cancer%22.

[8] Discussed in http://www.nytimes.com/2016/05/15/magazine/warburg-effect-an-old-idea-revived-starve-cancer-to-death.html?_r=0.

[9] I still maintain this even though months after chemotherapy I have some lingering effects that make life uncomfortable and difficult. It certainly doesn’t leave a body unscathed.

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About Us

On January 22, 2016 I went for a mammogram, to confirm that a lump in my right breast was a cyst. It was. And it saved my life. Because I was overdue for my breast screening, imaging was also done on my left breast  The mammogram and ultrasound came back “highly suspicious” for breast cancer...

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