Receiving a diagnosis of breast cancer is like staring down a huge, dark hole that you must jump into. You don’t know how far down you’ll drop or what awaits you when you get there. All you know is that it’s dark and, possibly, bottomless.

Information becomes your flashlight, and hope becomes your ladder. Once you know what you’re dealing with and map out a path to recovery, you still have to venture into that hole, but you can see a bit ahead of you and start climbing out into the sunlight.

In the 18 years since my diagnosis of breast cancer, or “breast cancer lite” as a friend who had a similar Stage 1 case called it, I’ve never referred to myself as a “survivor.”

Even though I’m told that at this point I have no greater chance of getting breast cancer than anyone else, I still feel that some inert cell hiding somewhere could surface to challenge the “survivor” label.

But I don’t think about it every day the way I used to. I learned a lot about having breast cancer, and where better to share this knowledge than here with you, my Sixty and Me community? Knowledge fights fear. To mark Breast Cancer Awareness Month, I give you these: my lessons learned.

Find It Early

Cancer grows, and cancer spreads. The more time that passes with the tumor untreated, the bigger the tumor gets and the greater the chance that the cancer will reach the lymph nodes and continue traveling. Once cancer metastasizes by growing in another part of the body, the chance of eradicating it significantly diminishes.

My prognosis was optimistic largely because I caught my cancer early. I felt the lump while taking a shower, called my doctor the same day, and had a needle biopsy two days later. Was I scared? Of course. But ignoring a lump does not make it go away.

Doing a self-check on my breasts, getting a diagnosis, and then having the lump surgically removed as soon as possible gave me the advantage of catching the cancer before it had grown or spread to my lymph nodes.

Every tenth of a centimeter growth can make a difference in your odds of surviving as well as your odds of keeping your breast through a lumpectomy rather than having to go through a mastectomy.

Get a yearly mammogram! Although I found my lump by doing a self-check, subsequently I did take a mammogram, and the tumor showed up on that, too.

Reviewing my previous mammogram from just 13 months earlier, my surgeon couldn’t find any evidence of impending malignancy. It’s important to get a mammogram every year.

Anyone Can Get Breast Cancer

At 48 years old, I was the first in my family to have any type of cancer. Like me, the vast majority of women diagnosed with breast cancer have no close relative with the same diagnosis. Also like me, many breast cancer victims exercise, eat well, and monitor their health.

I began obsessing over the cause. Was I eating something carcinogenic? Did wearing dry-cleaned clothing increase my risk? How about having a pest control service spray for bugs in my basement?

The answers may be out there, but for the time being, the only sure bet is that one in eight women will be diagnosed with breast cancer during her lifetime. As my oncologist told me at the time, “Rosanne, sometimes sh** just happens.”

You Decide How to Proceed

With the abundance of research now available on breast cancer, you’d think the medical community would be in agreement as to how to treat each case.

Nope. It’s wise to get a second opinion.

Doctors can differ on how aggressively to treat any individual patient, and patients have varying levels of comfort with risk.

For example, some women who receive a green light on getting the less invasive surgical option, a lumpectomy, dismiss that reassurance and insist instead on having a mastectomy out of fear that any remaining breast tissue will put them in jeopardy of a recurrence.

After the surgery decision, new questions arise. Should you undergo chemotherapy? If so, which drugs should you get, and how many treatments should you have? Should you be prescribed tamoxifen or, if you’re postmenopausal, an aromatase inhibitor?

Together, you and your doctor consider your age, family history, and lifestyle, as well as markers on the tumor itself. Your doctor will recommend a regimen, but in the end all the choices are up to you, the patient.

My surgeon said that the most up-to-date studies of the time indicated that, in cases like mine, survival rates did not improve with a mastectomy over lumpectomy + radiation. So, I went with the lumpectomy, followed by 30 sessions of radiation.

When it came to the chemotherapy decision, one doctor told me the ordeal of going through chemo wasn’t worth raising my survival chances meagerly, from 93% to 96-97%. A second doctor was on the fence about which way to advise me.

I decided to follow a third opinion and work with the doctor who told me, “You’re 48 years old. You have a lot of time for this cancer to show up again. Do the chemotherapy.” I have no regrets.

Treatment Reactions Vary

Whether you get a lumpectomy or a mastectomy, recovery time varies from woman to woman. And that’s just the surgery. Side effects from radiation and chemotherapy also span a broad spectrum.

As one doctor told me, “I’ve seen some women breeze through chemotherapy and others throw up for five days after each treatment.”

The emotional range is as broad as the physical. Often, response to this diagnosis follows the pattern of any grief: denial, anger, bargaining, depression, acceptance. But not everyone is typical, and some patients have a lot of trouble getting to “acceptance.”

Some women calm their panic by placing full trust in their doctors, period. They stay off medical internet sites, read no books on the topic, and have zero interest in hearing other women’s breast cancer stories.

But I think most women do just the opposite and find out everything they can about breast cancer. Their entire identity takes on a new layer as they become a member of the club no one wants to join.

A life-threatening disease can be a wake-up call. Within a year or so of having breast cancer, it’s not unusual to decide to get a divorce, switch careers, or travel the world. Suddenly, you really understand that life is short. But a disease like this also can bring a couple, family, or group of friends closer together.

You might discover how much people value you. I saved every note and email from friends, and I wrote down their verbal messages as well. My sister-in-law said, “I can’t imagine a world without you in it.” All of the compassionate expressions I received helped me get through this rough time.

Donations for Research Add Up

The breast cancer outlook brightened when women became activists and people like Susan Komen’s family established foundations. Money began pouring into research labs. In our generation, tremendous progress has been made in both survival rates and alleviating patients’ discomfort.

I still am grateful to all the women who participated in clinical trials to test new therapies, stood in malls handing out brochures to increase awareness, or testified at congressional committees to secure governmental funds.

Losing Hair Is Crummy

I write for the beauty salon industry, and I’ve done a lot of reporting about both alopecia and hair loss from cancer treatment. With the topic familiar to me, I was surprised at how difficult it was to face losing my own hair.

After all, hair grows back, and my life could be at stake, so it was worth being temporarily bald. Why is this so hard for women?

First, it’s a bit of a freak show. Of all the side effects of chemotherapy, this is the least familiar. We’ve all had some level of fatigue, nausea, and dry skin and mouth. But we’ve never watched our hair fall out.

It’s public – a visual announcement that you have cancer. Now everyone knows, including people you wouldn’t bother telling.

If you wear a wig, acquaintances may ask about your new hairstyle. If you’re walking around in a bandana with no eyebrows, or brazenly bald, strangers at the grocery store can shoot you that look of pity when you’re just thinking about which brand of bread to buy.

It’s incongruent with where you are in the process. By the time the hair falls out, typically you’ve moved on in your mind from being sick to getting well.

Your surgical scars have healed, and you’re full of hope that the chemotherapy will smoke out any remaining cancer, plus you’re probably a few treatments into the process.

Baldness feels like a misrepresentation of who you are at that point. Then you pass a mirror, and your reflection reminds you: cancer.

Being bald requires an entire education in handling a bald head. How do you wash it? How can you moisturize the scalp? Should you massage it? Where can you buy a wig? Which hats look most natural?

There’s no perfect solution, either. Wigs can be hot and scratchy on a bald head, and the wig rarely looks “like you.” Scarves slip around, having no anchor. Bandanas and baseball caps are too casual for dressy wear. Hats look oversized and odd with no hair or even bangs peeking out.

And yet, leaving the head uncovered gives people license to stare.

We’ve all heard the rationales for shaving your head to “take control” and avoid waking up to the gradual fallout on your pillow each morning.

I decided not to buzz my head. Instead, I just left it alone as much as possible in order not to disturb the hair. I washed and brushed it less often, straightening it up with a wide-tooth comb that I gently stroked through.

Despite my expectation that the hair would pop out in clumps, it fell quite evenly, and I kept the dozen or so strands that never gave up. That was my defiance. When the hair began to grow back, I finally cut those last strands.

I don’t know what color my natural hair was before cancer, but afterward it grew back fully gray and took on a tight curl that gradually relaxed. It was more abundant than before, and in my 50s I had better hair than I’d had since my 20s.

Afterthoughts

Having three daughters made pre-menopausal breast cancer an extra-frightening diagnosis for me, because now they have a much greater risk of getting it, too. My fears around that haven’t lessened.

And I make sure I’m available to listen to anyone who has a new cancer diagnosis. I can’t guarantee that the patient will repeat my outcome, but I can provide encouragement to soldier through the treatment.

When someone comes to me anxious about starting chemotherapy, I say, “I’m the biggest chicken in the world. If I could get through it, I know you can.”

What does being a “survivor” mean to you? Are you a breast cancer survivor? How does that feel? What did you go through to get to this point in your life? Which was most difficult for you to cope with – the emotional distress or the physical changes brought by your diagnosis? Please share your thoughts and encouragement stories below!

Let's Have a Conversation!