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12 Tips for Navigating A Cancer Diagnosis

Like many of our program participants, I have heard a provider say those stunning words: “You have cancer.” Three times, actually.

Over the 22 years since my initial diagnosis of Stage 3b breast cancer (with two recurrences), I have developed some “Rules of the Road” that have helped me — and others I have shared them with — handle a cancer diagnosis, both emotionally and practically. The practical and emotional responses are interconnected in that when the practical side is organized, the emotional side feels more in control as well.

At first, most cancer diagnoses seem extremely dire to those diagnosed. Dreadful visions take hold: there will be pain, suffering, death, and grieving loved ones left behind.

While in many instances, the prognosis is indeed grim, it is my experience that in most cases, the situation proves to be much less alarming than it seemed at first. This is not to minimize the difficulty of treatment protocols, only to say that with good medical care and adequate self-care, people usually wind up faring better — often much better — than they’d feared.

Life in the wake of a diagnosis of cancer feels much like the cancer cells themselves — chaotic, unpredictable, and out of control. Fears multiply at a terrifying rate. But — just as your therapy will hopefully restore order to your body — your life, too, will begin to assume some kind of order. Once you assemble your treatment team and decide on a course of therapy with your provider, you will start to see a pathway ahead, a series of logical steps to take. A sense of direction is in itself usually calming, despite the unknowns. So hang in there. The diagnosis is just a snapshot in time.

Upon diagnosis, approximately 100% of cancer patients ask what they did to “get” their cancer. (I had started wearing underwire bras a year before my diagnosis and became utterly convinced — despite zero evidence — that this caused my cancer.)

It’s important to bear in mind that only very rarely do we know exactly why someone receives a diagnosis of cancer. Cancer is a group of complex diseases with many possible causes, such as poor diet and fitness, toxic exposures, alcohol and tobacco use, viruses, and genetics. In fact, you could do everything “right”– that is, live a perfect “Anticancer lifestyle” — and still get cancer, or do everything “wrong” (in terms of lifestyle) and never get cancer.

Every time something is wrong with me and I look up my symptoms on the internet, the fruit of my evening’s research is the certainty that I will be dead in the morning. Most of us have had that experience of drifting ever-downward into internet wormholes, only to emerge blinking wide-eyed in paralyzing fear about our health.

This experience is amplified a hundred-fold when you’ve received a diagnosis of cancer. The first thing most of us search for is: What is my prognosis? It’s hard to keep in mind that whatever we see online does not speak to our unique situation. Prognosis statistics are gathered from huge population averages of all ages and genders, variable health statuses, and so forth. But everyone’s situation is unique. On top of that, online information is often unvetted and inaccurate.

Another reason not to wander too far into cyberspace is the number of “cancer charlatans” out there who seek to profit from our fear with seductive miracle cures, magical supplements, special coffee enemas, juice cleanses, and the like.

One worthwhile reason to go online is to conduct a search for patient support groups, especially if you have an unusual cancer or presentation. Fellow patients can often provide excellent resources and encouragement.

As you get further out from your diagnosis, internet searches will become less emotionally fraught. And there is, after all, some good information in the online wilderness. Try to find reliable sources. But before you get lost in medical cyberspace, be sure you have a trusted care team you can consult with questions and concerns.

This is an extension of the last tip about the Internet. In the wake of a cancer diagnosis, friends and family who want to be helpful are often full of advice about the wisdom they’ve gleaned from others or the internet: powerful supplements, miracle cures, or fabulous but little-known treatment centers in foreign countries. Some may exhort you to avoid all dairy-stress-sugar-soy-microwave ovens completely — you name it.

Sometimes this barrage can feel overwhelming. If you are in this situation, you will need to figure out ways to thank people for their concern — and then change the subject.

Stay steady, and keep focused on information that has been validated. Figure out who and what you trust, including (hopefully) your care team, as well as validated online sources of information, such as our website and the sites of many of our trusted colleagues.

Many oncologists encourage this. If you are unsure of the best next step or the most effective course of treatment, do not hesitate to seek more professional advice. Insurance will often cover these second-opinion consults. If your doctor disapproves of you consulting other medical professionals, he or she might not be the right doctor for you.

The case of a very close friend of mine drove this point home. When J was diagnosed with cancer, the first oncologist she saw recommended a chemotherapy regimen that was considered the “standard of care” for her cancer. However, upon learning that this protocol stood a very poor chance of making a significant survival difference, she sought a second opinion and in fact, received a very different treatment recommendation during this consult.

This is not to say that chemotherapy is not useful. In fact, it can be critical to successful treatment. Rather, what I want to communicate is that no matter how brilliant and compassionate your doctors are, you are your own best advocate. Don’t be afraid to ask questions and to persist until you are completely comfortable with the path forward.

This is a tough one. Personally, I’ve received thrillingly positive scan results and desperately terrible ones. For the first many years after my initial diagnosis, my heart leapt every time I received a scan report. Eventually, the cortisol and adrenaline eventually got washed out of me, and I began reacting with more equanimity.

Now — more than two decades and two recurrences in — during that painful interval between the scan and receiving the report, I always try to remind myself: “Whatever it is, it is, and my anxiety won’t change it one bit.”

Several years ago, when I had a few hours between my scan and doctor visit, I found the perfect way to pass the time: I left the hospital and went shoe shopping. And yes, dear reader, I did buy a pair.

This leads to point 7….

Your life has been completely turned upside down. Anxiety and depression, during and after treatment, are NORMAL.

Try to find things that bring you joy or a sense of balance. For example:

(When I was first diagnosed in 2001, I instinctively decided to build a tipi in my backyard as a place for quiet and comfort. I bought a how-to book, ordered a tipi cover, found some poles, and my husband, nephew, and I put the thing. My tipi became my place of blessed retreat, away from the phone, the news, and the concerns of others.)

Above all, during this time, be especially careful how you speak to yourself. Most of us engage in a lot of negative self-talk. If you find yourself thinking, “What is wrong with me? Why can’t I handle this better?” or “I’m not strong enough to deal with this,” or any of a hundred other downer messages we often pound ourselves with — seek help.

Many people who receive a cancer diagnosis seek to reassure and soothe those around them, particularly their children.

When I was diagnosed, my kids were 8, 10, and 12. I asked their wise teacher for advice about what to tell them. He replied that the prime directive is to not mislead them by giving false assurances — no matter how tempted I was to do just that. Because, he said, if you tell them Mommy will be fine, and then Mommy is not fine, or Mommy dies, their sense of trust will be undermined forever.

So, much as I was tempted to feign good cheer, I told the kids the truth, which was: “My doctors think I’ll be OK. We’d just have to see. I hope so, but I don’t know for sure.” I think my calm directness was, in fact, reassuring to them, more than fake positivity would have been. Kids are smart — they can see through false bravado.

A fresh cancer diagnosis is a time to ask for help and to feel fine about receiving it. Help with driving, meals, pet sitting — whatever you need. Always keep in mind that people WANT to help. In a way, you are doing them a favor by assigning them a discrete task. No one wants to feel powerless when someone they care about is in distress.

During my chemo treatments, a good friend organized meal drop-offs for our family. Homemade food lovingly prepared was a godsend. Other friends stepped forward in countless ways, large and small.

But sometimes offers of help from friends and family — along with their natural desire for information — can feel overwhelming. You may want to appoint your very own “public relations” person — a friend or family member who can field calls and answer questions while you are undergoing treatment.

Psychologically, it’s very important to keep your blood moving. Simply getting out of bed or off the couch is an affirmation that while your treatment may have you down, it does not have you out. Get outdoors, if possible, and be in nature when you can.

Walking, hiking, or any kind of activity can also be a great way to develop and strengthen friendships. When I was diagnosed, a woman I didn’t know very well stopped by to see me. She plopped at the foot of my bed and pronounced: “We are going to walk you through this.” And walk we did, all through surgery, chemo, and radiation. We continued walking and talking — for two decades.

While a cancer diagnosis is never welcome, in a “pain into purpose” or “lemons into lemonade” sort of way, it can provide an occasion to re-think your priorities, relationships, and work situation; the products you use, the food you eat, the habits you’ve formed — all of it.

I know that the imperative to “find the silver lining” can feel like part of the punishment. But that is not what I mean. This is more about taking back some control, about refusing to be swamped and completely overwhelmed by what you are going through. It’s about the possibility of taking advantage of this upheaval as an opportunity to make changes you may have wanted to make all along.

Managing your self-image can be particularly challenging when you are being treated for cancer. But try to keep in mind — through nausea, baldness, fatigue, or whatever treatment effects you are experiencing — that cancer is not who you are. It is something you are going through. A cancer diagnosis does not have to hijack your entire life. Try to resist being defined by disease.

Part of why this can be so difficult is the way others treat you. Cancer tends to evoke dread in most people. Looks of pity and concern can stab you right through the heart. You may find yourself cringing at hackneyed phrases like “Stay strong!” or “You can beat this!” Some friends may avoid you altogether.

Over time, I have learned to feel much more charity toward those who are unable to find appropriate words when they awkwardly express concern. Even though an astonishing 40% of Americans will receive a diagnosis of cancer at some point during their lives, it is nevertheless a hugely uncomfortable topic.

Try to be forgiving. Respond — or don’t — about your condition as you will, but then change the subject to other things you — or they — are doing. This will be a cue to your friends that it’s fine not to dwell on your medical situation — that you are still you, not a disease mounted on two legs. Always bear in mind that you are not obligated to share anything with anyone. Say only what is comfortable for you to reveal.

On the bright side, sometimes random people step up in ways large and small. I still remember the jokes and good cheer of the lady who ran the wig shop when, just for kicks, she plunked a platinum blonde mane on my head. I’ll never forget the warmth of my many kind nurses, or the fun little gifts that arrived out of the blue. Angels popped up everywhere.

During chemo, I remember walking down the street looking at random people and thinking, “THEY don’t have cancer, they are just going about their lives as normal — why me?” But as you speak frankly and openly with others, it becomes clear that pretty much everyone carries a great burden. It could be health, trauma, or toxic relationships. It could be bankruptcy, drug addiction, or mental illness. It could be anything. If we all wore backpacks stuffed with the weight of our emotional burdens, we’d all be walking around doubled over.

But remember that healing is always possible, even when curing is not. Ultimately, finding peace in the face of our afflictions comes down to a radical form of acceptance, of learning to live with the facts of our situation without letting them get the best of us; of doing our best to thrive — not just to survive — with power and purpose. There will be times when this feels impossible. But with a measure of self-care, you can increase the times when it does not.

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