PSA: 21+ things I wish I'd known at breast cancer diagnosis

English pink hydrangeas, London (August 2016)

I'm at the point now, almost 16 months post-diagnosis, 10 months post-treatment, where I'm the one encountering women new to breast-cancer diagnosis, right now a coworker and a close friend of my mother's, both a generation older. I'm not the newbie anymore: I'm a "survivor." And survivors have responsibilities to newbies. My great-aunt Mary Louise who had breast cancer and a radical mastectomy in the late 70s or early 80's—when almost everyone with breast cancer died—attended support groups regularly for many years as proof that not quite everyone died of breast cancer. Back then, her continued existence, year after year, was virtually a medical miracle. She gave women and their families hope. She died thirty-some years later in her mid-80s of problems related to old age (heart, memory)—a longevity that most cancer patients still can only dream of.

Breast cancer patients in the 21st century are exceptionally fortunate compared to those of previous centuries because the chances of survival are magnitudes higher. Scientific knowledge about cancer has grown and treatment options have increased. More women are surviving breast cancer and living longer than ever before.

Yet there's still a long way to go in treatment technology. Tumors can still recur elsewhere in the body at a later date, though less frequently than in the past. Mastectomies and lumpectomies deform the body and thus have lasting sexual and emotional impacts, though reconstruction results have also improved. Chemotherapy only works because of its tremendous toxicity to the body's renewing cells. Radiation may kill localized cancer cells but also increases future cancer risks. Extreme hormone therapy (blocking the body's female estrogen and progesterone hormones) has severe side effects for quality of life—whole-body joint pain, vaginal atrophy, decreased bladder control, and so on—by speeding up menopause and thus the physical aging process. There is still no quick, easy fix when fighting cancer, those rogue cells in the body pursuing immortality at the expense of their host.

But if treatments go well, if we are lucky, instead of heading directly for a coffin we may be granted the opportunity to keep living—and live a little or a lot differently, perhaps truer to our individual natures. Cancer, if it doesn't kill us, can reveal a handful of precious gifts, silver linings. So here are over 21 things as a guide I wish I'd had at diagnosis, when I found myself thrown unwilling into the cancer boat. I would have repeated some of them over and over like a mantra.

1. Having breast cancer is absolutely not your fault. You didn't do anything wrong. You were just . . . unlucky. Cancer occurs from a combination of gene anomalies or genetic predispositions combined with multiple exposures over time to various environmental toxins, carcinogens, and radiation. Stress and other life events may have contributed to cancer's growth but didn't cause it. Don't beat yourself up about anything. Read Anticancer: A New Way of Life by David Servan-Schreiber, MD, PhD.

2. It will take time for the shock and denial to wear off and your new reality to settle in. Be gentle with yourself during this time. (I myself watched a lot of British murder-mystery shows for morbid escapism during treatment. I may have cancer, I thought, but at least I'm not already dead like that woman lying sprawled on the floor there, poisoned by one of her household members.) Do whatever it takes to get yourself through this, without, of course, hurting others. This is a perfect time, though, to be more selfish. (You will need to be.)

3. Antidepressants are your friend. If anyone needs an antidepressant, it's someone going through cancer treatment, facing her own mortality. You'll be traversing some serious anguish that most people will never have to endure, even Buddhist monks. So accept this pharmaceutical help for a year or two with no guilt. Most cancer patients (around 70%, according to my first oncologist) end up on an antidepressant sometime during treatment, so start it soon after diagnosis for best results since the medicine takes weeks to begin working. And pick a pill with a built-in anti-anxiety component; having cancer is inherently anxiety producing.

4. Cancer is a club. You didn't ask to become a member, but here you are. Look around. Find a support group that fits. No matter how understanding, supportive, and sympathetic your friends and family may be, unless they have had cancer themselves, they can't possibly know how you feel. Other cancer survivors can empathize because they've been there. You'll need all the support you can get, even from strangers.

5. Educate yourself about cancer and its long, tragic history to help combat feelings of helplessness and gain perspective. Knowledge is power. Read Dr. Siddhartha Mukherjee's thick, beautifully written modern classic on the Western history of cancer treatment, The Emperor of All Maladies: A Biography of Cancer. The history of cancer treatment is humbling. You will learn gratitude for being born whenever you were and not sooner.

6. Do everything you can to become a more powerful agent in your own life. Snatch the controls. Grab the wheel. Work to counter any feelings of victimization, justified or not. Cancer wants to kill you. Become your own superhero. Love yourself. For inspiration, read Kelly Turner's Radical Remission: Surviving Cancer Against All Odds.

7. (Continue to) eat healthy foods but don't obsess about diet. Choose natural cancer-fighting foods that lower inflammation, limiting sugar and processed foods, but don't make eating into yet another stressor. Read The Cancer-Fighting Kitchen by Rebecca Katz and Mat Edelson for inspiration. Spontaneous Healing by Dr. Andrew Weil continues to be relevant for healthy diet and mind-body issues. If chemo is in the cards, others around you will especially need to step up where cooking and housework are concerned (you might be too busy barfing).

8. De-stress. De-stress. De-stress. Pursue calm and moments of joy. Laugh over movies or comedy shows. Talk with friends. Play games with children. Meditate or pray. Breathe deeply. Get a massage. Nap. Take bubble baths. Listen to music. Play a musical instrument. Do your hobby. Live in the moment. Have fun whenever possible. For cross-cultural inspiration, read Dan Buettner's Blue Zones: Nine Lessons for Living Longer.

9. Exercise naturally to unwind, work the heart, and activate the immune system, important for helping your body fight cancer cells. Go for long walks. Ride your bicycle. Garden. Swim. Practice yoga or Pilates. Exercise however you like. (Note to self: Buying a Fitbit and wearing it for a year will only prove that you already walk more than almost anyone you know—and you still got cancer, so it's not a lack of exercise that gave you cancer, nor is it poor diet. Review number one.)

10. Sleep more. Modern Western life is the enemy of good sleep because of too-busy schedules, chronic stress, city noise, and light pollution. Sleep is the body's natural healer. Help the body heal with sleep. Take naps. Sleep longer. Go to bed early. Wake up late. Sleep.

11. Take a daily small dose of melatonin, a light-affected natural hormone that can aid sleep and combat serious health problems. My nurse practitioner recommended half a gram a day. A pilot acquaintance suggests a gram or less a day. Consult your doctors for higher doses, which may prove therapeutic.

12. Along with a good multivitamin and calcium, pop a large daily dose of vitamin D3. Studies show vitamin D3 is increasingly linked to overall health, protecting against chronic diseases. Many people in Northern climates don't get enough vitamin D3 from natural sun exposure. Consult your doctors for blood work and recommended IU dosage.

13. Cancer treatment is often financially devastating in the U.S. for all but the poorest (on state aid) or richest (who can easily lose a couple hundred thousand dollars). Submit financial aid forms ASAP with your hospital system; good hospitals have built-in processes to help patients finance treatment, even patients with private or employer insurance. For poorer folks, that aid package might even require temporary state assistance, such as food stamps, collecting unemployment insurance, or switching to a state-funded health plan. Nonprofit organizations and religious charities also can provide resources to help deflect costs. Filing medical bankruptcy is not the only option. Debt is likely. If you have any financial assets, consult a lawyer. Try hard not to worry about money and focus more on getting well. It's no use wishing you lived somewhere with a national health care system—unless you could move there for treatment.

14. Insurance companies in a for-profit medical system tend to dislike paying the high costs of cancer treatment. So sometimes a procedure or pricey scan will need to be fought for. (You can do it.) Act as your own health advocate when possible. But if you don't have the energy to battle organizations over bills while fighting for your life, nominate a trusted other to be your financial advocate.

15. Choose carefully your team of doctors, preferably women. Nobody knows breasts like other women. Your cancer team will most likely include an oncological surgeon, a plastic surgeon, an oncologist, and a radiation oncologist, on top of your primary care physician (PCP) and gynecologist, who may only be observing and well-wishing from the sidelines during your treatment period. If lucky, your hospital might also provide a specialized nurse navigator, nurse practitioner, social worker, and therapist. You might also be referred for acupuncture or naturopathic care. Consult and learn from them all.

16. Cancer treatment will on average require four-to-six months out of your life between diagnosis and end of treatment, less time if really lucky or older, more if you're unlucky or younger. (Younger women are treated more aggressively to aim for highest life expectancy.) If working, you will most likely be taking a leave from work for some or all of this time. As my surgeon told me, "Your job right now [during treatment] is to be a patient." Think of the time as a cancer sabbatical, forcing life reassessment.

17. There will be many, many medical appointments ahead, and you will have many questions. Forget about all the looming co-pays and surrender to this new reality and identity as someone who is seriously, gravely ill. Write down questions for doctors ahead of time. Try to bring an ally (close friend or family member) to every appointment and take detailed notes. Go out to lunch afterwards or do something to celebrate making it through another appointment or another week of appointments. Sometimes you will be able to chat and laugh over mundane things along with everyone else. Other times you will feel like a living ghost stranded inside a parallel universe. It's all normal.

18. Keep a tabbed and organized cancer binder and bring it to appointments. From bills to get-well cards to copies of pathology reports, you'll easily fill an extra-large three-ring binder in six months. Organize it all now. Decide what to discard later.

19. Reconstruction is a bitch. If you require a mastectomy, the decision to reconstruct isn't always an easy one. Age, body image, financial costs, physical pain, discomfort, possible infections or other complications, and emotions and wants projected onto a future self are all part of the decision-making package. Plus, good reconstruction can take years between the placement of the tissue expander (to stretch out the remaining skin) and the final creation of a fake nipple (the cherry on top, so to speak). I initially wasn't going to reconstruct (and wish I hadn't), but let my doctors talk me into it. I still don't know if I made the right decision for me now at age 44 or my future self at age 64 (if lucky). Trust your body and initial gut reaction when making the decision (I wish I had). Basically, there are no easy answers when lopping off a sexualized body part.**

20. Hormone therapy will make you old. Certain types of breast cancer feed on the female hormones estrogen and progesterone, so hormone therapy for cancer treatment requires blocking or deleting those hormones, not adding more. The price of continued life, then, is old age. And it's a fairly high price for anyone who is premenopausal. Joints are creaky because now un-lubricated, making walking stiff and painful immediately after rising from a seated or prone position. On top of lowered sex drive, sexual intercourse can become more agonizing than it's worth because the vagina is now un-lubricated (and no amount of fake lube will make a difference). Welcome to the new normal.

21. Insurance in the U.S. may not cover future mammograms and MRIs, though doctors assume such scans are covered. Make sure you talk specifically to your doctors and clinics about billing codes after treatment ends. Post-treatment procedure and diagnosis codes must be billed as "preventative screening" rather than "follow-up." Because any time an insurance company can get out of paying for something, they will. If you don't want to fight insurance companies and negotiate with hospitals over bills every year (as I'm having to do), you might want to consider a double mastectomy that won't require any subsequent scans and could save you many thousands of dollars over time as a result.

22. Be more social. I'm an introvert who was never more social than during cancer treatment. You will need to talk about cancer. You will need distraction from cancer. You will need hugs. You will need sometimes the warm presence of another body beside you. You will need your friends and family now more than ever before. You can't do cancer alone.

23. Cancer is a personal journey. And, like life, every cancer journey is different. Some trips are longer. Some are rockier. We can't help but compare our journeys. In some comparisons, you might feel a bit jealous: She kept her breast(s)! She avoided chemo! She avoided radiation! She was estrogen-positive! She tested negative for the BRCA genes! She was only stage 0 (or 1, or 2, or 3)!* With others, you may feel yourself to be the lucky one. But no matter what happens, you will not be the same person after a cancer diagnosis, and you will not have the same body.

I wish for you health and wholeness.


*Note 1: I had a unilateral mastectomy in 2015 at age 43 with ongoing reconstruction, had both ovaries removed as part of treatment, had maximum weeks of radiation, and am on hormone therapy indefinitely. But I luckily, at the last minute, didn't require chemo because of the results of my Oncotype DX genetic test. A chemotherapy survivor would have even more to add to the above guide.

**Note 2: In June of 2017 I had the silicone implant removed, opting for a flat (i.e., concave) chest on the left side. My body was rejecting the implant, oozing lymphatic fluid from the November 2016 surgical scar, which hadn't healed properly because of radiation. Fortunately, by the time this started happening, I had already decided to have the implant removed. If I could do things over, I would not have let myself be talked into reconstruction by well-meaning doctors and family members, which involved two extra surgeries, multiple infections, constant discomfort with the implant, and two-and-a-half months of lymph fluid leakage. That said, the decision seems to come down to: Look better, feel worse (with reconstruction) OR Feel better, look worse (without reconstruction). I initially went with "look better" but ended at "feel better."

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