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Life After Breast Cancer

By PAMELA DITTMER MCKUEN
A decade or more after receiving treatment for breast cancer, the average woman reports her quality of life to be about the same as a woman who has never had the disease, according to a recent study from the University of Toronto.
   
The finding is reassuring—that the proverbial light at the end of the tunnel does exist. But getting there is rugged, both medically and emotionally. The medical journey is structured by a woman’s diagnosis and health care team. It is an all-consuming, sometimes painful time-suck that, for most, gradually fades into a bad dream. The emotional journey is different. It is an internal zig-zag of powerful feelings that stalls or erupts unpredictably. She travels this road the rest of her life.
  
The range of emotions a woman experiences as she processes from diagnosis through treatment into recovery is huge. She will feel shock and fear and rage and grief and denial. She may have flashes of silly laughter or dark humor. She may feel punished by the universe and warmed by compassionate others. And someday, down the road, she may discover a marvelous new beginning.

I’M GOING TO DIE
“That is everybody’s first reaction,” said gynecological surgeon Nicole Williams, M.D., founder of The Gynecological Institute in Chicago. “You recognize your own mortality.”
  
Some women keenly scrutinize statistics and survival rates in an attempt to figure out where they rank on the score cards. Dr. Williams reminds patients that their bodies can’t read the numbers.
  
“Even if they have a Stage 3 or Stage 4 diagnosis, I tell them their survival is not as good as if it had been caught earlier, but it is still possible,” she said. “I don’t want patients to think about the morbidity and mortality of it all. I want them to get their fighting gloves on and get ready to rumble.”
  
Not only was Lana Yoder Dale, 52, of Denver fearful after her diagnosis two years ago, her two 20-something daughters were as well. “They were so scared about losing their mom,” she said. “They wanted to know if they were going to get breast cancer, and they questioned whether I was hiding things from them.”

WHAT WILL I LOOK LIKE?

Breast cancer changes your body in numerous ways. Surgery leaves ugly scars. Reconstruction, as far as it has evolved, will never replicate natural breasts. Chemotherapy causes hair loss, and radiation alters skin tissue. A different or unattractive appearance, even for short terms, ignites massive worries.
  
“Suddenly, your body isn’t your own anymore,” said Dale.
    
“I was absolutely hysterical about losing my hair,” said Victoria Pattison, 58, of Arlington Heights. She was diagnosed in October 2012 and has undergone surgery, radiation, chemotherapy and reconstruction. Her newly emerging hair is now about an inch long.
  
“I couldn’t look at myself in the mirror,” she said. “I felt when I went out that everybody was looking at me, whether they were or weren’t. Some people did come up and say, ‘I know what you are going through. Look, I’ve got hair again.’”
  
“I’d never thought about losing my eyebrows and eyelashes,” said Seattle resident Susanne Pruitt, 52, who underwent a lumpectomy, chemotherapy and radiation a decade ago. “That was worse than losing my hair because you have no face.”

SECOND RECOVERY
Certified mastectomy fitter Pattie Cagney Sheehan founded the Second Act Cancer Recovery Boutique in Lakeview to help women regain and maintain a positive self-image during and after the rigors of surgery, reconstruction and chemotherapy. She fits and sells post-surgical garments, mastectomy bras, breast forms and wigs in a private, compassionate setting. She also guides clients through the insurance process.
  
“We make you look and feel like yourself again,” she said.
    
Counseling is a big part of Sheehan’s mission. Many women erroneously believe their only choices are a lumpectomy to retain their shape or a mastectomy to give them a better chance to live, she said.
  
“They can do a mastectomy and look completely normal,” she said. “Or maybe a woman has been told, ‘We’ll give you new breasts,’ and that’s wonderful, and then they find out the process takes six months or a year, and it’s ‘What do I do in the meantime?’We have temporary prostheses that work with expanders that can be adjusted as your shape changes.”
  
Some women, but not all, are more disturbed by hair loss than by surgery. One 30-something client about to lose her hair brought friends and a bottle of wine when she tried on wigs. She bought three: red, blonde and brunette. Another young woman found that some of the ready-made, synthetic hair wigs Sheehan carries too styled for her edgy personality. Sheehan referred her to a friend who makes custom wigs.
  
“Some Baby Boomers say, ‘I wore falls and wigs in the ‘70s. Let’s do that again,’” she said. “I think it’s a personality issue from Day One.”
   
Dr. Williams finds that patients often start thinking about their reconstruction even before their treatment plans have been defined.
 
“I try to get them to focus more on an overall healthy lifestyle,” she said. “There are many facets that go into the recovery process from cancer. Reconstruction is part of it, but to get through the horrors of chemotherapy and radiation sickness, you need to be as strong as possible first.”

GETTING THROUGH 
Each woman makes her way through the process and deals with it on her own terms. Some will be outspoken about their disease. Others, fearing pity or discrimination, will retreat. Some will have supportive spouses, children, extended family, friends and co-workers; others, not so much. Many health care systems, medical centers and nonprofit organizations offer counseling, support groups and programs for patients and caregivers.
  
“People tell me how strong I am,” said Pattison. “I don’t see myself that way. I was just doing what I had to do. Sometimes it was second-by-second, not minute-by-minute or hour-by-hour.”
  
Pattison found encouragement and support at Wellness Place in Palatine. Pruitt did the same at Gilda’s Club in Seattle.
  
“Although I felt really safe from the perspective of medical care, that doesn’t help you get through the emotional parts—the hair loss, the self-esteem, the anger that everyone else gets to go through life and you might not,” said Pruitt. “Those are things no doctors can help you with.”
  
Dale and her husband kept a blog to update family and friends. She also joined a private Facebook group of women who have the same type of aggressive cancer.
 
“I have learned that I can’t go to that morbid place with anyone who loves me,” she said. “When I start feeling bad feelings, I talk to two people and my Facebook women. It is harder for people who love you watch you go through it than for people who have been through it themselves. The people who love you want to help and they can’t fix it.”

IT NEVER GOES AWAY
During the treatment phase, many women become focused and even confident because they are “doing something active” to fight their cancer, said psychologist Patricia Mumby, Ph.D., who counsels cancer patients at the Loyola University Medical Center in Maywood. After treatment ends, emotional issues can become more prominent.
  
“Having a mastectomy or reconstruction can keep people pretty busy and occupied,” she said. “There is usually a lot of support at that time.”

The elephant in every room is: Will the cancer come back?
  
“You’ve always got a big question mark in your head,” said Pattison. “They tell me I’m cancer-free, and my lymph nodes were clear, but they can’t test every organ in my body. They are just going by what they think they know.”
  
Pruitt said she still second-guesses her decision to have the breast-conserving lumpectomy ten years ago.
 
“It worries me every day that I should have had the mastectomy,” she said. “But I was 42, and my vanity got in the way. I’ve even thought about going back and doing it.”
  
“There is always a chance the cancer will return, said Dr. Williams. “I counsel my patients to let that be a motivating factor to want to live life to its fullest. Not that you should take risky chances, but see every day you are here as a gift, and you can do something with that gift. You can choose to do something great with the gift of life.”

GOOD THINGS DO COME
Breast cancer is really awful, but not every aspect of the experience is awful. Even in the midst of the angst of it all, people can begin to notice positives, said Dr. Mumby.
  
“They might see their relationships strengthening or see that they are stronger than they ever thought,” she said. “Maybe there are new or renewed life priorities one begins to identity, or a stronger sense of spirituality and connectedness to the universe and their God.”
  
“The world is different to me now,” said Pattison. “I’ve learned to be much more accepting of things, to take everything with less stress and appreciate things more. So many people took time and went out of their way to send cards and fruit baskets and ask how I’m doing. It showed me that people really cared about me and what was going on. I hope I can be as supportive.”
  
“I have no idea how many more years or months I have to live, but, by golly, I am not wasting time,” said Dale. “I’ve got things to do.”
  
Pruitt came to view her breast cancer as a wake-up call. She held a fast-paced, stressful career in the world of stock brokerage when she was diagnosed. As she went through treatment and healing, she began to analyze her life and how she wanted to live whatever time was remaining. She quit her job and, along with best friend Shelley Callahan, created a luxury home and body fragrance company, Antica Farmacista. During the month of October, Antica Farmacista is donating all profits from the Peonia Gardenia and Rosa products to Gilda’s Club.
  
“It’s not easy to see when you are in it, but it’s been an opportunity to re-live my life.”

Published: October 12, 2013
Issue: November 2013 Issue

Comments

Love the Article
Really amazing article giving the outsider a true look at the challenges and life changing events we go through. I'm so thankful that I was able to share some of my journey with Pam. This will never be "over" but with continued research hopefully someday it will be "gone". For now, I continue to cling to my mantra that carries me through: Nemo in Little Mermaid says - "Just KEEP Swimming!"
Victoria Pattison, Oct-13-2013
My Cancer Never Went Away
About 30% of those originally diagnosed with breast cancer will go on to have a metastatic recurrence. I am one of the 5 to 10% who are metastatic from their first diagnosis. Not surprisingly, this article has no mention of the 150,000 US people currently living with metastatic breast cancer. It did not go away and it never will. Chicago is home to three board member of the Metastatic Breast Cancer Network, a non-profit for people living with this insidious and incurable disease. See www.mbcn.org for more information. Katherine O'Brien Living With Metastatic Breast Cancer Since 2009
Katherine OBrien, Oct-25-2013