Men Struggle With Wives' Breast Cancer in Silence

It's important for both partners to be as informed as possible about what's going to happen during breast cancer treatment and recovery, said Lynn Erdman, the vice president of community health for Susan G. Komen for the Cure.(Annette Bunch/Getty Images)

 

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By SYDNEY LUPKIN (@slupkin)

May 18, 2013

Seventy two hours after Elissa Bantug's mastectomy, she felt broken. She was only 25 years old, but she had lost both breasts and her strawberry blond hair to cancer. Drainage tubes still hung from her chest to remove excess fluid from the operation.

In that moment, she just wanted to have sex with her boyfriend.

"I just needed something to make me not feel so broken," said Bantug, who is now 31. "Anything to make me feel beautiful."

But instead of responding to her advances, Bantug said, her boyfriend pushed her off of him and told her it was crazy for her to have sex when she was so sick -- and so obviously in pain.

"It was awful," said Bantug. "It ended in a screaming match with doors being slammed."

Bantug said it was just one of the instances in which she and her boyfriend -- to whom she is now married -- didn't communicate well during her cancer experience. He had a hard time figuring out when he was supposed to let Bantug make decisions and when he was supposed to help her decide what to do. He didn't tell her how afraid he was.

When they did have sex, Bantug's boyfriend didn't know where to put his hands or whether putting them certain places would draw attention to Bantug's scars and upset her. He thought he should sleep in the guest room because he thought she needed the space to heal, but that made her worry that he was pulling away.

Now, Bantug knows better than to stay silent about these things, and it's her job to make sure cancer patients at Johns Hopkins Medical Center do, too. She runs the hospital's Breast Cancer Survivorship Program, where it's her job to answer the questions cancer patients and their spouses feel silly asking their oncologists.

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Couples want to know about what to eat and how to tell their children about the diagnosis, but they also want to know about nipple sensitivity, body image and whether cancer patients will be able to have an orgasm again, she said.

Even though breast cancer is primarily about the woman fighting it, psychologist Jennifer Wolkin said conversations about relationships inevitably come up in her sessions with patients.

In addition to finding themselves thrust into the unfamiliar role of emotional supporter, men feel they need to deny their own feelings to be stoic, said Wolkin.

"They give off an air of self-assuredness to protect women, but, ironically, it comes off as rejection," said Wolkin, who works at the Joan H. Tisch Center for Women's Health at NYU Langone.

She said men often lack support centers and have to journey through cancer alone. If they show their feelings, they worry it somehow makes them weak. Sometimes, a man's libido can even drop -- not so much because he's no longer attracted to his wife, but because of the uncertainty and unknown associated with the situation and her body.

But it doesn't have to be that way. Men and women just need to communicate and ask for help when they need it.

"Mastectomy is horrific, but I think it has potential to offer this place where a man and woman could really significantly grow in their relationship," Wolkin said.

It's important for both partners to be as informed as possible about what's going to happen during breast cancer treatment and recovery, said Lynn Erdman, the vice president of community health for Susan G. Komen for the Cure.

Erdman, a nurse who specializes in oncology, said men have their own set of concerns and emotional issues when it comes to having a spouse with breast cancer, but they often don't feel comfortable talking about them because they think it makes them selfish. She said many hospitals now offer support groups for men as a safe place for them to ask questions that would otherwise seem taboo.

"What we hear a lot of times is, 'What's the breast going to feel like after the implant is in and the tissue in it has been removed?'" Erdman said. "'If I hug her, is it going to hurt her?' 'Will it change our sex life?'"

"I've seen it often bring couples much closer together," she said."It's part of going through the cancer battle together."

http://abcnews.go.com/Health/men-struggle-wives-breast-cancer/story?id=19204485#.UakGRNIccfV

PERSONAL HEALTH MAY 27, 2013, 12:01 AM 45 Comments

Battling Cancer Together

By JANE E. BRODY

Vivienne Flesher

• F

PERSONAL HEALTH

Jane Brody on health and aging.

Three days after her double mastectomy for recurrent breast cancer, Elissa Bantug, then 25, needed to feel whole again. But when she expressed a desire for intimacy, her fiancé (now her husband) walked away, leaving her feeling hurt and angry and worried about their future together.

Weeks later she learned that his rejection was based not on any lost love or attraction, but on the fear that he might hurt her physically.

“I was just guessing,” Ms. Bantug said in an interview. “It would have been really helpful to hear his thoughts, fears and concerns.” But she admits she did no better at expressing her own.

All through the postoperative ordeal and chemotherapy, she said, “I did a bad job of communicating my needs. I would tell him I’m fine when I really felt awful, and then I would resent the fact that he didn’t take care of me.

“It was really hard, but we got through it because we love each other,” she said. “He finally told me: ‘I want you alive. I don’t care what your breasts look like.’ ”

Recognizing the importance of honesty and communication when cancer strikes, Ms. Bantug, now 31, went on to run a cancer survivors’ clinic at theJohns Hopkins Breast Center, helping other couples through the cancer experience. She spoke frankly of her own ordeal with Dan Shapiro, a professor of psychology at Penn State University.

Dr. Shapiro is the author of a new book, “And in Health: A Guide for Couples Facing Cancer Together.” His advice can help prevent the diagnosis from damaging one’s most important relationship.

Few know the challenges better. Both Dr. Shapiro and his wife, Terry, have survived serious bouts of cancer. Cancer, he wrote, “is like a tremor that rattles our walls and finds the fault lines that already existed. If we’re not careful, it reaches into our relationships and drags out these subtle differences and magnifies them.”

Dr. Shapiro met his wife in his 20s while undergoing a bone marrow transplant for Hodgkin’s lymphoma, a cancer of the lymph system. After they married, his cancer recurred, and he needed a second bone marrow transplant, which saved his life.

By means of stored sperm, the couple had two daughters. Then cancer struck again. Dr. Shapiro admits that when his wife was found to have breast cancer, he became “nonfunctional, terrified that she might die and fearing I’d have to raise the two girls by myself.” But instead of telling his wife, “I love you a lot — it’s hard to watch this,” he tried to protect her from his fears.

He has since learned that withholding his feelings was a big mistake. “By not being honest with each other,” he told me, “you can create a wedge in the relationship at a time when you both need understanding and support.”

Dr. Shapiro wrote that cancer can cause people to lose their bearings and to push away those they love and most need to help them through the challenges of treatment.

The lessons derived from his own experience and those of 40 other “cancer couples” are elaborated in his book, a kind of Cancer 101 for couples. Among them:

Teamwork Is Essential Even without the challenge of a potentially fatal diagnosis like cancer, people often have difficulty remembering everything doctors tell them and correctly interpreting the information. When couples see doctors as a team, with one assigned to take notes and both able to ask questions, misunderstandings about diagnoses and treatment options are less likely.

If doctors fail to adequately address the patient’s concerns, the couple should decide which partner will speak up. And when both members of a couple are educated about side effects, they are less likely to panic when a symptom develops.

Talk and Touch Whenever and however you can, express and show your love and concern in words, actions and touch. When faced with cancer, Dr. Shapiro’s wife needed him to say, repeatedly, that he loved her. “And she wanted me to take the trash down to the street on time without being reminded,” he added.
Love and support can also be communicated through touch. “A soft nonsexual touch on the arm or shoulder can be a soothing balm when we feel vulnerable,” Dr. Shapiro wrote.

Allow for Mistakes Couples must rely more than ever on patience and tolerance. “Cancer requires a whole new set of skills at a time when most of us are depleted, distracted and scared,” he wrote. Each person should go easy on the partner when “rookie mistakes” occur, like forgetting appointments, losing things or locking the keys in the car.

When people are anxious, they may blame each other for their ill feelings. The psychologist warns against acting on “negative feelings” that inevitably arise, for example, when couples are waiting for the results of treatment. Rather than take out their anxiety on spouses, themselves or anyone else, he suggests, “Do exercise, go for walks, see a movie, talk to friends and distract yourself.”

Nobody Can Read Minds Like Ms. Bantug, patients often expect their partners to know how they are feeling and what they may want, then resent it when unexpressed needs are not met.

A patient’s ability and energy to perform tasks may change from one day to the next. Patients may feel unsupported if their partners expect them to function normally when they feel awful, or they may resent having jobs taken from them when they feel well. It’s better to ask than to assume. Both should “talk about what needs to be done today and who’s going to do it,” Dr. Shapiro advised. He encourages spouses to repeatedly check in with each other about various tasks.

Prepare for the Unknown When Penny Carruth’s husband’s body “shut down” while he was being treated for lymphoma, she didn’t know if he would want to be artificially ventilated. “It seemed like torture — he moaned, groaned and tried to pull off the mask. His hands had to be tied down,” she told me.

In Dr. Shapiro’s book, she urges couples to have a conversation about end-of-life care, making clear their wishes in case a spouse later faces decisions about life support.

“Advance directives are a lasting gift” for those you love, Dr. Shapiro said. One woman he interviewed lost her chance to spend the last months with her husband in the way she wanted because the doctors pursued treatment even as he was dying.

http://well.blogs.nytimes.com/2013/05/27/facing-cancer-together/?emc=tnt&tntemail0=y

A version of this article appeared in print on 05/28/2013, on page D5 of the NewYork edition with the headline: Battling Cancer Together.

Coverage gaps can hamper access to some breast cancer screening, care

iStockphoto

MICHELLE ANDREWS, KAISER HEALTH NEWS

POSTED: Wednesday, May 29, 2013, 6:00 AM

Breast cancer or the threat of it is a reality in too many women’s lives, including that of the actress Angelina Jolie as we learned earlier this month. As women mull their options for genetic testing, screening and treatment for the disease, one factor that can loom large is the extent to which their health insurance will cover whatever choices they make.

Most coverage is pretty good, experts agree, and it's getting better under the Affordable Care Act. Still, there are weak spots, and some plans are woefully inadequate. In those instances, a woman may face high out-of-pocket costs or have to appeal plan denials to get the coverage she needs.

Jolie announced that she underwent genetic testing and, after learning she has a genetic mutation that significantly increases her risk of breast and ovarian cancers, had a double mastectomy. Her mother died of ovarian cancer at age 56.

If a woman has a family history of breast or ovarian cancer, many health plans cover genetic counseling and testing to identify mutations in the BRCA1 and BRCA2 genes that are known to increase risk of disease. Inherited BRCA1 and BRCA2 mutations account for an estimated 5 to 10 percent of breast cancers and up to 15 percent of ovarian cancers, according to the National Cancer Institute.

The test costs roughly $3,000. Genetic counseling is less expensive but can still cost hundreds of dollars, experts say. Although testing may be a covered benefit, the out-of-pocket costs can be significant, says Mary Daly, chair of the department of clinical genetics at Fox Chase Cancer Center in Philadelphia. For example, if a patient is responsible for 20 percent of the test's cost, it could run $600.

"In the smaller health-care plans, the coverage gets worse and worse," she says.

As part of the Affordable Care Act, individual and group plans that are not grandfathered must provide genetic counseling and testing without any patient cost-sharing for women whose family history indicates a likely mutation.

For older women, Medicare generally covers genetic testing only if a woman has received a diagnosis of breast cancer.

Actress Angelina Jolie explained in a New York Times column earlier this month why she chose to have a bilateral mastectomy preventatively (Photo by Oli Scarff/Getty Images).

Insurers rarely object when women who test positive for a genetic mutation decide on surgery to remove their breasts or ovaries, experts say. It doesn't matter whether they already have cancer.

The average woman has about a 12 percent chance of developing breast cancer in her lifetime. Many women are at above-average risk for breast cancer for many reasons, including family history and dense breast tissue. They may need stepped-up screening for breast cancer, including earlier mammograms, for example, even though they're unlikely to have a faulty gene that predisposes them to cancer.

At the University of Texas MD Anderson Cancer Center in Houston, clinicians generally recommend a highly sensitive MRI test to screen for breast cancer if a woman's lifetime risk is 20 percent or higher, says Therese Bevers, medical director of the cancer prevention center at MD Anderson.

"Sometimes insurers don't accept that," says Bevers, who chairs the breast cancer screening and diagnosis panel of the National Comprehensive Cancer Network. "There's no one standard. Each plan seems to differ."

If the test, which can cost $2,000 or more, isn't approved by the insurer, the "vast majority" of patients don't do it, says Bevers.

The Affordable Care Act says patients can receive preventive services aimed at high-risk individuals without paying anything out of pocket, but which services are covered remains unclear.

Among women with cancer in one breast, a growing number want to have both breasts removed, Daly says, even in the absence of a genetic mutation. One study found the proportion of patients making this choice increased from 4.2 percent in 1998 to 11 percent in 2003.

It's a troubling trend, she says, since the likelihood that a woman will get cancer in the other breast is small. But insurers generally approve the surgery anyway, in her experience.

Federal law requires coverage of breast reconstruction for insured women following a mastectomy.

But women sometimes encounter coverage problems related to services they need after they've been treated for breast cancer. For example, some women develop lymphedema, a chronic condition that results in fluid retention and tissue swelling that can be painful and lead to infection.

Coverage for the compression sleeves these women need to wear is sometimes limited, says Erin Reidy, associate director of policy at the American Cancer Society's Cancer Action Network. Ongoing physical therapy is sometimes limited as well, she says.

The health law prohibits lifetime dollar limits on medical services, but it allows visit limits for some types of services, Reidy says. A plan might permit only 60 physical therapy visits over a lifetime, for example.

"Someone with chronic lymphedema might blow right through that," she says.

--

Kaiser Health News <http://www.kaiserhealthnews.org> is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

Read more at http://www.philly.com/philly/health/healthcare-exchange/Coverage_gaps_can_hamper_access_to_some_breast_cancer_screening_care_.html#bW0qc5CiI3ZWiydd.99

Kaiser Health News

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Office of Hematology and Oncology Products (OHOP)

• Organizations within the Office
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The Office of Hematology and Oncology Products (OHOP) is responsible for making safe and effective drugs for cancer and hematologic conditions available to the U.S. public. OHOP oversees development, approval, and regulation of:

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The staff of OHOP consists of over 130 highly trained physicians, scientists and regulatory project managers with expertise in oncology, hematology, radiology, internal medicine, pharmacology/toxicology, and regulatory affairs. These professionals work with specialists in other CDER scientific disciplines such as statistics, clinical pharmacology, epidemiology, chemistry, and drug safety to independently review data on new treatments for cancer.  Review Team Responsibilities.

OHOP is committed to facilitating rapid development, review, and action on promising new cancer therapies. Scientists within OHOP are working intensively on incorporating innovations in pharmacogenomics, bioinformatics, and clinical trial design into the drug development process. These efforts will provide the basis for accelerating introduction of new treatments for cancer into practice.  Within the Office is the Office Director, Associate Director for Regulatory Science, Associate Director for Regulatory Affairs, Associate Director for Oncology Sciences, Regulatory Project Managers within the Oncology Program (program that coordinates oncology activities within the FDA as well as with external stakeholders) and support staff.  There are also three clinical divisions and one nonclinical division (responsible for reviewing animal studies) within OHOP.  Following is the structure of OHOP:

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Division of Oncology Products 1 (DOP1)	Division of Oncology Products 2 (DOP2)	Division of Hematology Products (DHP)	Division of Hematology Oncology Toxicology (DHOT)
Division Director, Robert Justice, MD, MS	Division Director, Patricia Keegan, MD	Division Director, Ann Farrell, MD	Division Director, John Leighton, PhD
Breast, Gynecologic, Genitourinary, Supportive care (non-heme)	Gastrointestinal, Lung/H & N, Neuro-oncology/Rare cancers/Pediatric Solid Tumors, Melanoma/Sarcoma	Benign hematology, Hematologic malignancy, Hematology support, Pediatric Hematology	Nonclinical Review Division for Hematology/Oncology products

 

Richard Pazdur, M.D.
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Finding My Niche, Post Cancer

Posted: 05/28/2013 11:23 am

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I was diagnosed with Hodgkin's Lymphoma, stage 2A with bulky mediastonal disease, when I was 22. Luckily, I have been cancer-free for five years and counting. Treatment took almost a year, about nine months of ABVD chemotherapy, plus one continuous month of radiation. It was hands down the hardest battle that I've ever had to fight, physically, emotionally, and financially. Treatment wasn't easy, and it came with its fair share of complications, but I feel so lucky to call myself a survivor. The day I became cancer-free was bittersweet. For one, I couldn't believe I overcame the disease, and I was the happiest that I had ever felt in my life. At the same time, though, I had a huge financial burden on my shoulders that was really weighing me down. I was terrified.

Most people know that cancer is expensive, but I didn't think that most people understood what that meant for a twenty-something. I was lucky to have health insurance during treatment, but that didn't mean I got off scot-free. I owed money to my chemo center, my surgeons, my breathing specialist and my radiologist. Besides medical bills, I had the rest of the bills we all get to experience: phone, rent, utilities, tuition, groceries, etc. It became very overwhelming, very fast. It got to the point where I feared going in for my follow-up treatment because I was a few thousand behind on my next minimum payment due. Scary, right? I felt like I was drowning.

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I applied, and patiently waited. I got a call one afternoon while I was on the train leaving Union Station after class. I found out that I was receiving a grant from The SAMFund. I was literally speechless, but at the same time I wanted to scream because I was so honored, and so happy. That day was the second best day of my life. The SAMFund helped out in so many ways, I cannot even put into words how much they've changed my life, and therefore, opened up opportunities for me.

Beyond the grant, I dove into the community because I felt that connection and wanted to give back. Being a part of something like that has brought so much meaning to my life. I started volunteering with The SAMfund shortly after I received my grant. From there, my involvement began to grow. I sat on the planning committee for Chicago's first SAMFund fundraiser, and then went on to help plan the next two as well. In 2010, I was asked to join the Alumni Leadership Council (ALC), working on fundraising, brainstorming for growth, and reaching out to new grant recipients. Fundraising is one of my favorite aspects of volunteering, and it is so important to me because I am living proof of the impact that the money has on survivors. I have met the most amazing people through my involvement, and today, I proudly sit as the chairperson of the ALC. Currently, I am in the midst of helping plan Chicago's fourth fundraiser, and couldn't be more excited. In addition, I love meeting new SAMFund alumni. It's an instant connection as we have so much in common, and I value those friendships so much. I know that this is where I was meant to end up.

Looking back, as hard as it was, between the weekly treatments, the painful shots, the hair-loss, and constant worry, I ended up growing more than I ever thought I would. Going through something so bad ended up bringing me something so good. It hasn't been easy, but I found my silver lining. The people I've met will be in my life forever, and the imprint The SAMFund has left on me has shaped who I am today. We all grow from our experiences. I became a different person. When life threw me cancer, I had no choice but to take every negative thought and throw it out. I put myself out there, found somewhere that I belonged, found somewhere that made me feel complete. I found my niche in life, and I couldn't be more proud of who I've become.

To learn more about The SAMFund, please visit www.thesamfund.org
The SAMFund supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Through direct financial assistance, in-person and online support, The SAMFund helps young adults move forward towards their personal, professional, and educational goals.

http://www.huffingtonpost.com/kate-sievers/finding-my-niche-post-cancer_b_3315890.html