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The Things Breast Cancer Survivors Wish You Knew Breast cancer diagnosis forever changes lives

Three women with pink breast cancer awareness ribbon
Image via Getty Images Plus

“Pinktober” is upon us, and the saturation of pink everything runs a little cliché and somewhat controversial. Don’t rush out and get a pink ribbon tote bag for your friend with breast cancer. Parts of survivorship aren’t widely understood—sometimes even
by newly diagnosed patients themselves.

Jill Mull, a breast cancer patient navigator for Johns Hopkins Medicine, is a survivor herself and lends her experience to resource expertise as she guides young cancer patients on their journey. Cathy Hirsch, also a breast cancer survivor, is the founder of The Frank and Clara Hirsch Foundation, a peer-support volunteer for American Cancer Society’s Reach to Recovery and President of Reach to Recovery International.

A survivor on Day 1

“Some people wonder, ‘Does survivorship begin when I finish chemo, when I have surgery, when I finish treatment?” says Mull. “Survivorship begins the moment you hear that diagnosis.”

The term survivor itself can be a little touchy. It is important not to marginalize patients who have stage four cancer, often called thrivers. When cancer has metastasized to the brain, liver, bones or lungs, these patients will continue treatment indefinitely. Terminology preferences vary. “If you line up 20 people with cancer, then you may get 20 different answers,” Mull says.

Cancer doesn’t end with the bell

“Many people think that you finish your last chemo, ‘Woo hoo! Ring the bell. You’re done!’ but that’s actually when a lot of the healing starts,” says Mull. It can be frustrating when well-meaning friends and neighbors say congratulations, then return to business as usual. Patients who were wrapped up in treatment now process what happened, and the trauma sinks in as supports
fade away.

Post-traumatic stress disorder is common after serious medical diagnosis. “We have people two and five years out dealing with PTSD. There’s lifelong ebbing and flowing after cancer,” Mull observes.

Communication and care

When active treatment ends, there’s still need for support. “Even survivors are surprised they feel that way. Early- stage patients need to learn that this is a long-term way of feeling. They don’t realize that they won’t immediately feel better after. They might need to still talk months or years after treatment,” advises Mull.

Many treatment plans have patients continuing to take oral therapies for five or 10 years after the most intense regimens conclude. The pills become a daily ritual, and individuals experience a degree of comfort in knowing something is still being done to help keep cancer at bay. When the prescription ends, the feeling of vulnerability can be hard to shake.

No certificate of completion

There’s reluctance to say a survivor is cured or cancer-free. A more common designation is NED, no evidence of disease. Regrettably, no comprehensive scan can definitively prove treatment worked. Further scans are likely to happen only if or when symptoms reappear. “Fear of recurrence is huge. A headache is not ‘just a headache’ again,” says Mull.

Now nearly 18 years out from chemotherapy, Hirsch worries less than she used to. “Although I’m fully aware that breast cancer can reappear at any time and there is no five-year cutoff for recurrences, I know that the likelihood decreases with time. Somewhere along the line I stopped thinking that every ache or pain I experienced was my cancer coming back.”

Finding the light

“When you are first diagnosed, that’s a long tunnel with a dim light at the end, but as you go through it, you will see the light,” says Mull. “It gets brighter, but it’s still scary.”

Hirsch tells newly diagnosed survivors that when they know what comes next, things will get easier. “Once a patient consults the doctors, makes surgery and treatment decisions and maps out a plan of action, she will feel much more in control.”

“Most people who survive cancer report that they became better people because of the experience,” says Hirsch. “They developed more empathy for others, a new realization of how valued they are and a renewed sense of what matters most in life. When I was reeling from the diagnosis, I was touched by the many kindnesses I received. It made me look at my relationships in a more positive light and appreciate my family and friends even more.”

Reassurance in good company

Survivor support groups are amazing. “To be with people who are walking your walk really helps to get empathy and understanding. Talking to people and being open about it is one of the most helpful resources,” says Mull. Myriad special groups exist, such as young women, women of color, LGBTQ and others.

Hirsch agrees that talking with someone with a similar cancer experience is an invaluable source of practical and emotional support. “When a patient talks with a survivor, she is in a safe place where she can express concerns and fears to someone uniquely able to understand.”

Guidance from navigators and volunteers

Navigators help guide survivors through challenging aspects of post-diagnosis life, such as finding the words to talk to children, locating groups, managing sexual side effects and seeking stress management and financial supports.

“Find out if your hospital has a patient navigator who can help you find resources and not muddle through on your own. They will stay with you from the moment you are diagnosed through the life span,” says Mull. Many hospitals in Baltimore have navigators for breast cancer.

Volunteers from groups such as the American Cancer Society are another lifeline. “One of the most significant experiences I had while being treated was a phone call from a Reach to Recovery volunteer,” says Hirsch. “Allison called me the night before my first chemo. She was my age and had three children. Seven years earlier, she had undergone the same surgery and chemo that I would be having. Talking to her made me realize that I could get through treatment and not only survive but thrive. Allison was living proof.”

Advocacy and advice

Hirsch’s conversations with Allison inspired her own advocacy. “The impact of those calls was so powerful that I decided to become a volunteer myself once I had completed treatment,” she says.

Survivors often pay it forward, sharing their truth and advice with those after them. “Explaining ‘I’ve been there, and I’m hopeful that you’ll be where I am in a year, and here’s a great place to get a wig. Here’s some things I did to get through treatment’ is helpful,” says Mull. “People love insider tips!”

Each year, more than 4,800 Marylanders receive a life-altering diagnosis of breast cancer, according to the Red Devils, a Baltimore-based organization that partners with 31 hospitals and facilities throughout Maryland to help support quality of life for survivors and thrivers.

Odds are that you know a survivor. Think beyond the pink and understand that life is forever changed. Your support is forever valued.

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